FSGS Sucks

1 year kidneyversary

noreply@blogger.com (Storaloppan) — Sun, 17 May 2026 04:27:58 +0000

Today marks one year since I received a second kidney transplant, and the thing people will wonder is "how am I doing"? And, as has always been the case on this blog, the answer isn't simple. When I first started writing this blog, it was so easy to sit down and pour out my thoughts, but now it seems almost impossible. I don't know if it has something to do with my inability to focus much right now, my absolutely "too many tabs open in my brain", or if I'm just emotionally dead inside.

How can 365 days past seemingly so quickly? I'm going to venture to say it's because, as the last time, I'm still under transplant care. Over the last year, I think there have only been 4-5 weeks that I haven't had an appointment at Mayo Clinic. I just read the last post on this blog, when I was 11-days post transplant and had to laugh a little. This was clearly written immediately before we saw the recurrence of FSGS again. Back then, 2 weeks post-transplant, Joacim and I were just talking about amazing it felt to not have any protein in my urine. And literally the next day I did labs and they showed protein in my urine. So that's why all of the appointments...we're still trying to keep it at bay and protect the function of the kidney.

I'll try to recall everything we've done so far, but it's been a lot:

a kidney biopsy to confirm FSGS recurrence
an infusion of obinitumumab to knock out my B cells in the hopes that it would work to beat down the FSGS, which did knock out my B cells but not the FSGS
9 weeks of LDL Pheresis (2 days a week of 3 weeks, and then 1 day a week for 6 weeks). Initially this was to be part of a clinical trial where the principal investigator was my transplant nephrologist, but the company sponsoring the trial with to dis-include me due to me taking thyroid medication. This was annoying and stupid, but I was still able to complete the course of treatment, but it didn't have a significant effect on the amount of protein I was spilling.
so then we started plasmapheresis again. This didn't work much for me the last time, but this time it makes a significant positive impact on my protein spillage. So much so that sometimes my team has gotten a little over-confident with my results but also given me a much-needed break from Mayo (sometimes 3-4 weeks at a time), only to have my protein soot right back up
After every plasmapheresis treatment (of which there would be 2-3 per week) I would do a 2 hour infusion of IVIG. After my last transplant we did a lot of plasmapheresis too, and a few IVIG infusions, but likely not enough as I became quite ill with a lung disease/disorder similar to something called bronchiectasis. So now we do IVIG after every plasmapheresis treatment to ensure I stay healthy, which has worked very well so far.

All of this was before Christmas

I had a nice break from Mayo over Christmas...4 week in fact. But my protein levels got quite high, so we hit plasmapheresis hard after New Year's. We started out with 5 per week for 1 week, and then 3/week for 3 weeks, then 2/week and then 1/week for a couple more weeks, with a 2-hour infusion after each one of those.
Somewhere in the middle of that we started a new medication called daratumumab. When my doctor talked to me about this medication and how it was to be administered, he said 16 weeks of an injection, however that was not the case. The first infusion was 6 hours or so, and it started on a Friday after plasmapheresis and IVIG. I was not prepared for this, hadn't had lunch and by the time I left Mayo at 9:30, every thing was closed. I didn't return home until 11:30pm that night, and I was enraged and exhausted. I even called the Mayo Patient Experience number to complain about this...the lack of communication from my team. I'm not exactly satisfied that it affected anything, unfortunately.
Somewhere in March I got another break. I was literally in remission from FSGS....a place I hadn't been since 2008 if. you can believe that. but after another longer break, protein shot back up and I was back to plasmapheresis and IVIG.
It gets a little fuzzy in my memory here, timelines and all, but most recently I think we're still trying to dial in exactly how much plasmapheresis I'll need and how often. I had another dose of obinitumumab a couple of weeks ago. I've been having my labs checked at Mayo in New Prague (a 30 minute drive as opposed to a 2 hour drive), as well as having my site dressing changed on my catheter and IVIG infusions. When my protein gets too high, I'll do 1-2 sessions of plasmapheresis. The plan for the next few weeks is to do labs Monday mornings and then plasmapheresis/IVIG on both Monday and Wednesday.

I feel like I'm suffering from a case of whiplash, going between periods of intense treatments to periods of home life, and it's been difficult. When someone asks me how I'm doing, I have no idea what to say. I'm happy that my kidney is still functioning, but it is requiring a lot of me to keep it that way. There was an intense fear that I would have to go back to work. Both my long term disability and my social security disability start a clock 365 days post transplant to see if I'm healthy enough to resume working. I have some confidence that it'll be delayed now, but it's always looming. Honestly, when I first stopped working, I hated it. Didn't know how to fill all the time because if my available time was endless, then nothing was important. Now, after 11 years, I've figured that out and can easily fill a day. I carry a lot of the household things, plus my own health and Izzy's school stuff, and it fills the days quite easily. And, if I'm being honest, I don't really want to work anymore. And I can't imagine there are a lot of companies in today's environment that want to hire a 51 year old woman who's been unemployed for 11 years.

I've still tried to exercise as that's something that's always important to me, but it's not been easy because I've have this damn chest catheter since August (it was put it to start LDL Pheresis), and you can't really sweat with it because the bandage comes off and there's a risk of infection. I still sweat....it's getting to be that time of the year where it's inescapable unless I never want to go outside. Plus I'm perimenopausal now and suffer from frequent night sweats, so there's that. But hopefully next week I'll be able to get this chest catheter out and have 2 Apheresis PowerFlow ports put in. These are very similar to ports that someone on chemotherapy would have, but this one is designed for plasmapheresis access and flow rates. They are larger and buried under the skin, so the advantage is no dressings to change, normal showers where I can let the water run over my head, swimming in the summer and hot yoga classes. I'm worried that they'll stick out of my skin and people will notice them, but I had the same worries when I got my fistula and got over it pretty quick. Here's what the ports look like (I'll have 2 placed (one on each side of my chest, above my breasts, for supply and return):

Speaking of fistula, mine died. This one really pisses me off. I've been trying since my transplant to get a fistulagram (roto rooter) scheduled because my fistula has a tendency to want to close on itself. While on dialysis I'd get one done every 3 months or so because it did actually clot off one time. I had a revision done to widen the vein and had then done preventatively after that. But the thing about fistulagrams is that they require contrast dye to be injected during the procedure for visibility, but that dye is very hard on kidneys, especially newly transplanted ones, and there was no way my doctor was willing to risk it. So I understand the reason, but am still devastated that I lost it. I think my neph, and maybe transplant doctors overall, don't really concern themselves with fistula care because they don't think someone who had a transplant will need it. But I live in my real world with all of my real world experience, and it seems ludicrous that no one except for me was concerned about it. And no one really seemed to care about it after it died. I even went so far to have a fistula gram scheduled at Mayo for it, so Joacim took a day off to go with me, and I sat in pre-op for 2 1/2 hours past my appointment time, only for the doctor performing the procedure to walk in and say he wouldn't do it. I can't even go into it....it still makes me so very angry, but that's what happened. And so now, sometime in the future, I'll need to go through that whole terrible process of getting another one. More scars, less ideal locations....it all sucks so much.

Yes, of COURSE I'm happy that I'm not connected to a dialysis machine for 8-10 hours a night 4 times a week, but that doesn't make all of the rest of this okay. We still mostly determine my care on a week to week basis, so it's back to the terrible land of limbo, and wondering what'll happen next. And communication at Mayo has been a mess as compared to the last time. The administrative burden of being a patient right now is tremendous....the number of phone calls and messages to get appointments scheduled, or times corrected, or to explain to scheduling the treatments I'm supposed to be getting has been insane, and easily the biggest source of my frustration. Just the other day, when I went to bed I showed 5 appointments in my portal, but the next morning there were 29. They keep trying to schedule things out weeks/months at a time, but we LITERALLY go week to week. So that's 20+ appointments that are going to need to be cancelled/resheduled/moved, and that'll easily take 5 phone calls. And if I don't have to travel to Rochester and can do something in New Prague, then I'm going to go with that option. But in Mayo's system, that's a different geographical region which requires my doctor to write a separate order for.

And on top of all of this, I'm STILL actively managing my potassium and taking the same medications I took while on dialysis...ditto with my hemoglobin. Having Medicare this tine as my primary has been an experience. Mostly positive, but because of billing issues created by Medicare my secondary insurance company denies to pick up the remaining costs of 3 or my immunosuppressant mediations. That I'll take for the rest of my life.

I had hoped I would've taken a few trips that I dreamed about while on dialysis, but that hasn't happened either. I've only been to Tampa in August (steamy) to tour a college, and then to Indiana in January for a funeral. No Italy or Greece anywhere in sight. We've a trip planned for Norway this summer, but are concerned that the war in Iran will wreck that too, but still trying to be a little optimistic on that one.

And to wallow a little bit, I miss having someone to celebrate this momentous day with. Adam was my ride or die with our transplant (which we still celebrate in our own little way). I'd thought I could celebrate this with Joacim since it DID happen on his birthday, but he's on his annual fishing trip (the same one he was on last year). I was with my daughter all day but she didn't mention it. Thank goodness for a good friend who sent me a sweet message today or else it probably would've gone completely unnoticed by the universe.

I'll admit that I haven't written a letter to my donor's family yet. I feel terrible about it, but I keep waiting for good news to tell them, so that they felt good about their decision to donate their loved one's organs, but I just haven't figured out what to say. I keep thinking something will come to me, and it will, but I'd like to write something more than "Thank You".

As always, I wish I had amazing news to write. But also, as always, I'm giving it to you straight, warts and all. But I do want to convey that this kidney is so much happier and healthier at this time in the process than Adam's kidney was at the same time. Why it's so different is anyone's guess, but the FSGS seems to be less aggressive this time, and I've had 2 different medications that I didn't have the last time that could be making a difference. It'll always be a mystery, but it's entertaining to hypothesize on what's different.

Okay, I think that's about all I can write at this time. Thank you for your kind thoughts, your prayers and for reading this far :) I'm still fighting and not about to give up.

Where are we 11 days post-transplant

noreply@blogger.com (Storaloppan) — Tue, 27 May 2025 18:35:00 +0000

It's hard to believe it's already been 11 days since I had my kidney transplant. I'm feeling better every day, but there are a couple of things that are holding me back.

I still have a drain at the top of my incision that is highly irritating. This was put in because the sac surrounding the kidney was damaged, so my surgeon removed most of it before implanting it in me (but it will grow back eventually). This sometimes causes the kidney to be a bit leaky, so they put a drain in to make sure fluid wasn't collecting around the kidney, which would put pressure on it and possibly affect it's functioning.

picture of drain and incision

It has been draining a significant amount of fluid since then, so there was some concern that there was fluid around the kidney. I had excess lymphocele fluid collecting around my previous transplant, and ended up having a laprascopic surgery to put a drain window in my peritoneal wall , I was able to meet with my surgeon this past Friday (May 23) and he scheduled an ultrasound. Thankfully, the kidney looked great, and there were no fluid pockets, so essentially this meant that the drain could be removed, but it was late afternoon Friday, before Memorial Day weekend, so I'd have to keep it at least until Tuesday. The fluid that's leaking from the kidney into this drain will essentially be reabsorbed by my body.

The problem right now is that I don't have any follow-up appointment with the surgeon, and none scheduled with my transplant nephrologist. This has been a little bit frustrating, because I'd like to see my entire week of appointments laid out so I can feel like there's some measure of a plan. That's not quite happening, but I met with a social worker today who suggested I reach out to my nurse coordinator (who I have technically not met yet), and they can help reach out to the team to move things along. It is my very desperate wish to be rid of this drain by the end of today.

This thing leaks...a lot. And the fluid gets on my clothes, and it's gross and smells, so we're doing more laundry than I thought we would. They gave me supplies to change the dressing, but I leak through it within an hour of putting it on, and then it leaks through to my clothes. I was getting so frustrated about this over the weekend that I came up with what I thought was an ingenious idea: maxi pads. That's right, my friends, I'm using maxi pads strategically taped around the area to absorb the fluid while keeping me dry. This worked well the first day, and I thought I was so smart, but it's either leaking more than it was, or we are't placing the pads the same way. Anyway, here's a pic of our handiwork:

the sticky backs and wings are annoying

Here's a video of Joacim changing my maxi pad bandage.

I'm still dealing with higher than desired potassium and phosphorus levels. I'm terrible about taking phosphorus binders...they're supposed to be taken with meals, but I'm not really eating meals at this point...too full. I picked up a potassium binder medication yesterday, so pending today's labs I'll take that to try to bind the excess potassium in my digestive track.

Speaking of digestive track, I've FINALLY started having bowel movements. 10 days is a ridiculously long time to go without one, and I've been feeling so incredibly full all the time that it's negatively affecting my eating, and causing a great deal of heartburn. My abdomen is quite distended still, so I'm hoping that this will help soothe everything and slowly start to shrink my belly and let me be hungry.

One of the immunosuppressive medications that I take is called Tacrolimus. I currently take it 2x/day and have trough levels determined pretty frequently. It's important that I have a trough of 8-12, and I currently achieve that taking 5mg in the am and pm. The issue is that this medication causes me TERRIBLE tremors, and I feel that they're starting already, My movements are shaky, and sometimes jerky and uncontrolled. I feel quite shaky inside and unsettled...I don't know how else to describe this feeling but it's terrible. My arms are getting so tired when holding things up, like a book, from the tremors. I spoke to my transplant neph about this and that this affected me quite negatively the last time. There's a long-acting version of this that doesn't cause quite the same intensity of side effects, but they want to make sure they've got my dosage where they want it before switching me.

I mean, this med makes it hard to put on makeup, forget about even writing anything legibly (it's kind of a jerky scribble when I try). I do my own gel nails now too, and take a lot of pride in that, but I don't now how I'll do it with this tremor. I'd also like my body to feel normal inside. I'm not anxious, but that's what it feels like in my chest.

On a good note, all of my water retention is gone. I actually stopped the diuretics I was taking because my toes and legs were cramping. I was keeping track of how many times I was urinating throughout the day..it was every 2 hours at first, and then every hour. On Thursday I lost track after 18 pees. I still pee every few hours, but I'm at least able to get some sleep in between them. I have my ankles back, mu knees, my collarbone. My abdomen is still quite swollen, but I expect that'll take more time to heal. I think that, the way my scars are from both transplants, that I'll never have a flat stomach again, no matter how much I exercise. I'm still vain enough to care about this.

But all in all, things look great. My numbers are slowly coming down (good thing) and we currently don't see a recurrence of the FSGS. I almost hate typing that as I fear jinxing it, but I should also celebrate the good while it's good, right? Not good, no....freaking amazing!!!!

Joacim and I are still doing quite well living in in this hotel room together. We were able to take a couple of road trips this weekend to get out of our room. I used Claude.ai to come up with a plan to road trip around the "drift less area" and that's what we followed. Saturday was a drive to LaCrosse, where we walked around and ate a few things. Joacim can't pass up a German sausage, so I knew we'd be going to LaCrossse bierhaus ;). We also hit Pearl St. ice cream, which was AMAZING. I had butter pecan and J had blueberry cheesecake.

a chicken schnitzel instead of sausage

I look absolutely possessed in this photo

But we ended up leaving earlier than planned due to my drain line leaking through my clothes. I was also quite tired that day, so we are home, and I took at 2 hour nap.

On Saturday we went to Lanesboro, which is known for pleasure biking. What a cute little town! Joacim had more ice cream and I had a latte. There was a cool vibey store next to the ice cream where Joacim surprised me by buying me a new Labradorite ring. I LOVE rings....he also surprised me with one when I got to our hotel the first night. It was so sweet of him and I love them!

gold/silver ring

labradorite ring

On Sunday we just hung around Rochester, going to the grocery story, bookstore, Scheel's, return stuff at Target. And lots of rest.

We're spending our evenings watching either the Timberwolves or the Pacers in their respective conference finals. It's a nice, easy life right now. It's like living in a little bubble...sometimes re-entry into real life feels kind of hard because there's so much more to do/think about. I'll enjoy this time while I have it.

I GOT A KIDNEY!!! (part 2)

noreply@blogger.com (Storaloppan) — Thu, 22 May 2025 21:33:00 +0000

Warning: there are some photos that might make you squeamish....I'm sorry if it does but want you all to see what this is like

Okay, where were we? Yes, slumber and surgery.

My surgery started at 3:00pm, and Joacim made it to Mayo at 3:20pm, so I didn't get to see him before it. I wonder what that was like for him...you know, having a 4 hour drive from up north to contemplate what was happening and start planning for how we'll handle everything logistically. Then going home to pack who knows what for a stay here for who knows how long, get Izzy and Tucker settled and THEN driving to Mayo and finding a hotel for us and my parents....it just must've been so much.

And all on his birthday. That's right, I got a new kidney for Joacim's birthday!!!! He won't ever forget the date of this transplant.

Anyway, surgery went well. The kidney was put on the left side this time because Adam's kidney is still in my body on the right side...they don't remove non-functioning kidneys unless they're causing problems, and his is not. Physiologically this is a more difficult location due to anatomy (here's what Claude.AI gave as an explanation for this:

The left-side placement for your second kidney transplant is indeed more challenging for several anatomical and surgical reasons:
Vascular anatomy differences: The left iliac vessels (where transplant kidneys are typically connected) have a different configuration than the right side. The left common iliac vein lies deeper and more medially positioned, making it harder to access and work with during surgery. The surgeon needs to work around more complex vessel branching patterns on the left side.
Previous surgical scarring: Since you already had surgery on the right side, placing the second kidney on the left means working in a completely new surgical field. However, the left retroperitoneal space (where the kidney sits) can be more technically demanding to access initially compared to the right side, which is typically the preferred side for first transplants.
Anatomical space constraints: The left iliac fossa has slightly different anatomical relationships with surrounding structures. The sigmoid colon and its mesentery can create more crowded conditions, requiring more careful dissection and potentially a larger incision to safely place the kidney and create the vascular connections.
Surgical approach complexity: The angle and depth required to access the left iliac vessels often necessitates a longer, more extensive incision. This allows the surgeon better visualization and working room for the more technically demanding vascular anastomoses (connections between blood vessels).
Ureter implantation: While not dramatically different, the path for connecting the new kidney's ureter to your bladder may require slight modifications in surgical technique when working from the left side.
The larger scar and longer operative time reflect the additional technical complexity, but left-side kidney transplants are still very successful. Your surgical team chose this approach because it was the safest option for your specific situation.

By 7:18pm, Joacim had posted in a group text the following:

Jenn is in recovery. They did an ultrasound and everything looks great. BP is a little low but Doc isn’t worried. She might go to the ECU for monitoring. I should be able to see her in a couple of hours.

I hardly remember being in recovery...the only thing I remember were multiple people telling me to breathe deep. I tend to be hard to wake up after a general anesthesia, and I breathe so slow that my heart rate drops too low, so they try everyone to wake me up but all I want to do is sleep. I didn't feel any pain at this point as I was still pretty knocked out, but I was in recovery for a little longer than usual (I think) because of my low blood pressure. They were trying to decide if I should go back to my original room under General Care, of if I should go to the ICU for closer monitoring. They eventually decided ICU because of my BP, and I spent 3 nights there monitoring me, giving me infusions for transplant, giving me meds to raise my blood pressure, pumping me full of prednisone and antibiotics. It's all pretty standard stuff, but I'm glad I was there. It's a very low ratio of nurses to patients and I needed all the care and help I could get.

My first night there was brutal though. My bed was in the middle of the room, right under a vent that blew ALL NIGHT LONG, and we couldn't get the temperature to stay where I wanted it, so it felt like cool air. I eventually got the chills and those bone-deep shudders. It was painful being that tense, and I felt like I was strangling in blankets. I even tried to cover my head, which helped but wasn't very practical. I hate breezes blowing on me in the hospital. I had great nurses, and the food was pretty decent. My nurse eventually moved my bed closer to the door and wall in order to avoid the breeze which was a lifesaver!

I sat up the day after surgery 2 times in a chair. I think I had dialysis again this day to help with my electrolyte balance. By the 3rd day I was started walking, at first assisted with a walker and a nurse associate (I know that's not the name for them, but I don't know what to call them). It's pretty painful at this point, and I can't stand up straight at all...I feel like I have absolutely no deep core muscles, and the skin around the incision feels so tight.They told me about a Methodist Mile competition in that if you walk a mile while in the hospital you could get a free t-shirt, and I was determined to get it. I was moved from ICU to General care the afternoon of Day 3 and walked assisted by pushing a wheelchair all the way over there. Day 4 had no dialysis or anything, so I watched a lot of cringey TV shows (think Charmed or Bones) and was happy. Day 5 came, and I finished my Methodist Mile and got my Foley catheter removed (bladder), did more labs (this was a multiple-time per day occurrence, and was discharged to go to the hotel

Methodist Mile t-shirt

I got fairly decent sleep throughout this time (except that first night). Most of the people coming in started around 5:30-6:00am, with my nurse coming in to give pain meds and check my urine output and incision drain output, and then labs, and then nurse again to give Immunosuppressant meds, and then General Care rounds, and then Transplant rounds, and then more nurses and meds, and sometimes hanging a bag of lasix to help my kidney remove some of the extra weight I was carrying, and then remind me or order meals, and then someone to bring them in. An ever rotating cast of care providers.

To give you an idea of how much weight, my "dry weight" the day before my transplant was 69kg. This is a term used to estimate your "true" weight when you've pulled off all the "extra" fluid. After surgery, I think I was up to 77kg. If you need a conversion, that's 151.8lbs to 169lbs. I felt so full....it was so hard to breathe, but I asked for one of those breathing things you see that help you train you to draw deep breaths again because I didn't want to get pneumonia. I was given fluids during surgery, and told that my body was in shock, and my internal organs were also, and they were holding on to a lot of fluid, so it was going to take some time for it to come down. I'm down to 73.4kg (161.5lbs), so the kidney is perking up. We estimate I'm making somewhere along the lines of 2.5L of urine right now (based off the frequency that I have to go and the amount I go each time, which I'm estimating to be 250ml). It's going to take some time for my tiny little bladder to stretch and expand to that of a normal person's, and it's good to do this slower so as not to risk that sutures that are there from connecting the donor kidney's ureter to my bladder. At some point during my hospital stay I looked at my belly button and freaked out because it was essentially "missing" due to the swelling. At first I was swollen everywhere....eyelids to toes. But each day I saw a little improvement, starting from the top and moving down, and so I just stayed patient with everything.

eyelid swelling right after surgery

That's what was so different about this time. My first transplant was full of emotion (mostly anxiety), trying to absorb everything and all the numbers. But this time I was just....chill. Like not dead inside but not anxious. I keep my hope under wraps because it's too hard, but I'll say I'm better off at this point now than I was the last time, both mentally and physically.

So, Joacim and I are staying in a Residence Inn for at least the 2 weeks post hospital discharge. I usually have labs in the morning, and various other appointments during the day. I meet with the transplant nephrology team most frequently but there are also visits with a social worker, dietitian and pharmacist. It's not terribly busy, and there's lots of down time, which is nice. Joacim can get some work done and calls made, and I can rest and keep my feet up to help the swelling in my legs. I left the hospital with an incision drain that's stitched to my abdomen inside and out. I was having some leakage at the site where the drain line comes out, so they put a urostomy bag around it to contain that leakage too. I have to empty the little bladder for it fairly frequently, as I'm draining about 450ml of fluid from the area around my new kidney per day, and write down the times and amounts. So now I carry a little plastic measuring cup around in my purse and a notebook everywhere so I can do that. Also trying to get my head around my meds. Some have to be taken at exact times so trying to stay on top of that too.

too many meds

We've got a nice room...it's a newer hotel and they have breakfast available so it was an easy choice. It's like a studio with a bed, sofa and nearly full kitchen, so we're set. Sometimes we go out to eat, and sometimes we just hang out here and eat groceries we've bought. The last 2 nights were spent watching the NBS conference finals. We had AMAZING food at a placed called First Meeting Noodles. Think hand-pull noodles stir fried or in soup. I ordered pork wontons in chili sauce and Mongolian Beef Friend Noodle, and they were AMAZING. The chili in the wontons set off like a volcano the heartburn I've been dealing with. Even the hot green tea was irritating. Coffee too. Anything temperature or spicy hot wrecks me. I had heartburn the last time due to prednisone, but it's 10 times worse right now. All of my abdominal swelling is aggravating the reflux that I have, so I eat very bland foods, and very small amounts. And drink a lot of water.

My bland snacks

Water is my best friend!

We were done with appointments today by 11, so we've been back at the hotel. I'm resting in bed, online shopping, keeping up with my email, reading ALL the newsletters I subscribe to, and writing these posts. Joacim's gotten some work done, attending a few calls, and is now working out in the hotel gym. He still has his annual summer solstice mountain bike race in Canada in June that he's trying to stay in shape for it. Being here can make that so challenging, and it's easy to lull into lazy, but I'm proud of him.

my current setup

He's been a great caregiver so far, attending to all of my needs. We haven't argued about anything, and he's been kind and patient. Honestly, just perfect.

I'll have labs again tomorrow, and there was some talk about doing an ultrasound around the kidney due to some of the swelling and pain that's happening around there, so we'll see. I've got a gnarly scar that goes from my left hip all the way across my pubic bone (probably 6 or 7 inches??), and this drain line sticking out of my abdomen, and some of the worst bruising I've ever seen. I have a bruise that covers the entire front part of a bikini...like DEEP purple, extending down the front of my thighs. The bruising doesn't hurt, thankfully.

this is what I'm dealing with

You can get an idea of the bruising too. It's solid dark purple under my underwear

Okay, I think that about wraps things up and brings us current. I probably won't post on here daily, but every few days as things develop. Thank you all for caring and for reading and commenting...looks like we've got a lot of people rooting for us!

I GOT A KIDNEY! (part 1)

noreply@blogger.com (Storaloppan) — Thu, 22 May 2025 03:21:00 +0000

I can't even believe it, but I had a kidney match and got a transplant Friday, May 17th. I'm so out of practice writing here that I'm not even sure where to start.

Catch-up since last post in 2020

Not much other than dialysis. That's a good thing....everything was pretty stable, health-wise. We traveled. I really got into exercise (lifting weights, pilates and hot yoga) during COVID and it's continued up until Thursday. But I was having a period of being really tired of dialysis. Some blood pressure issues and unexplained weight gain were really getting to me. I was perimenopausal too, which complicated these things.

Thursday, May 16 & Friday May 17

Joacim had left for a fishing trip early Thursday morning that was planned to go through Sunday afternoon. He'd then come home, probably do a bunch of laundry, and was then supposed to be off to Sweden on Monday.

I went to hot yoga in the morning at 9:30am, and then did a leg workout after that, so I was pretty sore when I got home. I decided to take a hot bath to relax and soothe my body, and then my phone rang and it was a 507 area code. I answered it, and the surgeon on the other end of the line said that they think they have a kidney for me and did I want it. I only remembering answering yes...too stunned to think of any questions to ask. Of course I was also thinking "how is Joacim going to get home? He drove up with one o the other guys and was still on his way there. The surgeon said that donor was deceased, and that the planned surgery would be 10:00pm. If they called me after that, the kidney was mine, and if they didn't call well....it wasn't.

I dread this. I'd like call either way, but that's not how it works. Anyway, I called Joacim to let him know about the call, but we decided it didn't make sense to do anything different at that point because what if they didn't call? Plus, I was scared to jinx it.

I then went down to my good friend Julia's house and told her, and she was as excited for me as I was. We talk about it a lot because I complain about the dialysis struggles and the impact on my every day life. I also asked her if maybe she could drive down there with me if they called so she could drive my car back home. Then I called my Dad. and then I saw my friend Jill while walking our dog, Tucker, and told her. She also lives nearby and between her and Julia knew that they could help out Izzy too. And then I texted my college roommates Andrea, Carrie and Holly. And, of course, I told my first kidney donor, Adam. He was so happy for me, and it felt really great.

When Izzy got home and I told her what was going on, and gave her the option of coming with me or staying home. We felt staying home was the right thing for her...she was having her bestie over the next day anyway, and had work both Saturday and Sunday (yes, she has a JOB now...and is DRIVING!!).

And that was it. I tried to stay busy all day. Did some gardening, watched some shows with Izzy when she got home..just chill. I don't know....I can't explain it (likely a trauma response) but I didn't feel any emotions about it all day. It was in the back of my head, but not consuming me. I've gotten one call before, 3 years prior, and it gutted me when they didn't end up calling. I wasn't going to do that again, so I just went on and if nothing was happening. I went to bed around 10:00pm, scrolled TikTok for an embarrassingly long time, and finally, when it was 1:00am and no call, I assumed it was over. I took my sleeping/anxiety meds and went to sleep.

And then 42 minutes later the surgeon called again and gave me the miraculous new. I had a kidney. "How long would it be before I could make it down there." I said 4:00am and he said "we'll plan on seeing you then". And then I called Julia to tell her so she could get ready to come with me. I woke up Izzy to let her know, and her hug and excitement for me I'l remember forever. And I called my dad. I started packing furiously (yes, I didn't even pack a single thing cause jinxing...). I wasn't even sure what I threw in there and if it made sense, but I had to pack for a week of being in the hospital and then the time after in the hotel, plus toiletries and things to do during all the downtime I'd have.

Julia arrived about 20 minutes later, I grabbed a couple of cheese sticks and a sleeve of crackers, and we headed to Mayo. I started trying to get a hold of Joacim, but he was about 4 hours north, on Lake Winnie (for the locals), and without a vehicle. I texted, called and left messages, but the service is not great where they were staying, and I knew I had to wait until he woke up and read his text messages.

Julia and I got there around 4:00am. She came in with me to check in because I was worried that they'd say no if they saw I came there by myself, but they weren't so then she was able to leave and get home to get her girls ready for the school in the morning (on basically no sleep....sorry Julia :) And things went fast from there. I got to what was supposed to be my post-op room, had labs come in and draw a lot of tubes of blood. Then I had plasmapheresis in the room and a thymoglobulin infusion to reduce the risk of rejection. And THEN I had to get dialysis for 3 hours, partly because I would've dialyzed that night normally, and my potassium was a little high. And after dialysis I went to get a chest x-ray, and then we headed back up to our room and they were ready to take me to post-op. The surgery was scheduled for 3:00pm, and it was around 1:30pm at this point. I finally did get a hold of Joacim, and one the guys fishing up there was driving him back home (thank you Mike!!!), but he didn't make it to the hospital before my surgery. I had to get a pregnancy test (blood) because I didn't make urine and I was still getting my periods, even irregularly, so that added some extra wait time.

But pretty quickly I was rolled to the OR. I'll never forget this...I see 2 surgeons in the corner of the room hovering over the donor kidney. I looked at it and it was white....like no blood in it at all. This kind of mentally prepared me for delayed functioning. I found out eventually that the kidney had been on ice for 19 hours prior to getting to me (I know, the math ain't mathin' but who cares?) It was so weird walking in there and having my hope for a new life in a container. We had to wait about 20-30 minutes in the OR on the pregnancy test, but as soon was we got the result I started drifting to sleep and the surgey started.

Okay, it's 10:00pm here. I'm tired and have labs tomorrow at 6:50am, so I'm going to head off to bed. I'll cover the rest tomorrow in a part 2. Good night!

(and I don't know why the photos are wonky...there aren't a lot of options in Blogger) but they are as follows:

1. pre-op activities

2. labs....so many vials

3. dialysis

4. a photo that I sent to my friend Holly during dialysis

5. me, still in disbelief in pre-op

Transplant / Living Donor Info for me (edited)

noreply@blogger.com (Storaloppan) — Fri, 07 Aug 2020 16:04:00 +0000

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info. I've got to take advantage of every single person's interest because YOU JUST NEVER KNOW, right?

If you are reading this and are curious about the living donor process, a great website to investigate is https://transplantliving.org.

I'm looking for an O+ kidney. If you already know that you're not O+, don't worry. If you're willing you can sign up for the kidney paired exchange program. You can learn more about that here. https://www.kidney.org/transplantation/livingdonors/incompatiblebloodtype

Okay, so here's the info for my transplant center. I'm currently listed at the University of Minnesota. Here is the contact info for the Living Donor Team:

When you call, you need to specify that you're interested in being tested as a possible living donor for Jennifer Trunk. Please know that I am never notified of who is being tested....it's completely confidential. I wouldn't know that anyone got tested until someone actually came back as a match. The living donor and recipient teams are completely separate as well. I say this because I imagine it's an emotional thing to go through the process....maybe you want to try but are worried that you wouldn't be able to donate for whatever reason. And maybe you find out you are a match, but something happens and you change your mind. Please understand that I'll never know unless you're a match and agree to move forward. Also, all of the costs are covered by my own insurance.

For me, this waiting can be discouraging. I don't get a call saying someone is being tested (at least not that I remember), so I'm always wondering what's happening. Sometimes it can feel like I'll never find a donor.

I have a LOT of antibodies built up in my immune system....this is from pregnancy, my first transplant, and 4 blood transfusions after it due to severe anemia. What I'm saying is that I'm looking for a needle in a haystack, but maybe that's you....

Thank you for taking the time to read, and please share across your own social media sites :)

Back from a 2-year absence....

noreply@blogger.com (Storaloppan) — Fri, 07 Aug 2020 01:01:00 +0000

This is the first time I've logged onto my blog in 2 years! I only thought it had been a year since I last posted, but I was way off on that I guess.

So what made me come back? There are a few reasons:

First and foremost, I need another transplant and I hope this blog ends up being seen by someone willing to donate their kidney to me, because a living donor is still my best option. I've been on dialysis for 3 1/2 years now, and while I'm doing well on it, I would still rather live a life that's not dependent on a machine.

Last week I participated in the National Kidney Foundation's Big Ask Big Give webinar and it was motivating. This is a webinar for people looking for a living donor kidney as well as their friends/family. It was a shortened version (I think) but still great.The purpose of it is to help us better tell our stories in the hopes of finding a living donor. There's a lot of info that I need to go through, and actually go through the process of working through all of the worksheets, but it's the first time I've been motivated to do anything in regards to the search for a living kidney donor.

Lynnda ;) Lynnda is a woman I met several years ago via the interwebs. Her husband, Tony, has the same disease as I do, and we went through our transplants around the same time, and had similar experiences (she somehow stumbled across this blog). We've become friends over the years, and occasionally she asks me when I'm going to re-start my blog. She finds value in my perspective, and she's never given up on me. It'll be nice to finally tell her that I re-started it ;)

I think writing down my thoughts/feelings is cathartic for me. I've noticed my anxiety level is much higher now than when I was regularly blogging here, but my health is actually more stable now than it's ever been. Maybe getting the words out of my head and into the world will make me feel better.

Last night I had a terrible run. Well, I didn't actually run at all. I think I have a narrow spot in my fistula, and the needle that "pulls" blood from my body to the dialysis machine feels like it's sucking a big vacuum, and it doesn't like that at all...the machine just can't run, so I had to abort the whole thing. When I physically palpate my fistula, I can feel a narrow spot right where the tip of the arterial needle hits. I called the vascular surgery center today and they initially said that they couldn't get time in until next Tuesday. I'll try to dialyze again tonight, but my concern is that if it doesn't work, then that will have been 4 days since my last good run. That means 4 days worth of fluid and electrolyte build-up, and I've already been having problems with high potassium levels (and those are no joke....they can stop your heart instantly, without warning). It's been 3 days and I already feel the effects of no dialysis. Luckily my dialysis nurse was able to explain all of this to them and they got me in for a fistulagram tomorrow at 11:45am. A fistulagram is where they go into the fistula itself and inject a dye to see if/where the narrowing is, and if there is one, then they use a balloon angioplasty to try to widen it. It's a pretty common procedure (one I've had several times), but this is the first time I've been in a hospital since COVID, and it's a lot nerve-wracking. It should all go smoothly, fingers crossed!!!

Woohoo - no more pneumonia (well almost....) but other terrible things, like a car accident...

noreply@blogger.com (Storaloppan) — Fri, 17 Aug 2018 03:44:00 +0000

Hello all! I felt like it's been forever since I last posted, but it wasn't as bad as I thought once I checked. I'm writing this just to keep track of everything, and so I can remember everything...

I had another chest x-ray and breathing test yesterday, and it looks like my pneumonia is mostly all gone now. I feel MUCH better than I did 2 months ago, but I've literally done nothing physically since being diagnosed back in June. No yoga, no mowing the lawn....I barely walked up and down the stairs for a month. But all of that is better now (I'm still not mowing....no glutton for punishment here!) but also no yoga (I hope to remedy that next week when Izzy's at camp).

I also had an esophagram last week to try to get to the bottom of why I continue to get pneumonia. It was an uncomfortable procedure (barium drink is gross.....) but it didn't reveal any issues with my anatomy that could be contributing to the frequency of my pneumonia. Not a total loss I guess...at least we've ruled that out. It almost feels like now we're just waiting for the next time I get it.

Also, the ever-persistent cough is gone for now. After doing some research, and talking to a friend on Instagram who also has FSGS, I think I have something called laryngeal sensory neuropathy. Essentially, as I understand it, the nerves in my throat have become "irritated" from all of the coughing I do. So now, when I cough a lot, it triggers this neuropathy, and it can last anywhere from 3-6 weeks for me. There are medications available to treat the neuropathy, and there's also botox injections to the affected nerves (worst case scenario). I have an appointment with the University of Minnesota's Cough Clinic next week (I was referred there by my ENT), so I'm SUPER hopeful that this can be addressed there and we can develop a long-term plan for this intermittent, but all-consuming problem.

My sinuses are pretty good right now considering it's the beginning of ragweed season. My bronchiectasis has been very manageable for the last several days, so today I'll say that I feel good :) I think that catches up on all of the medical things (except for the sharp pain in my back, but I'll get to that in a minute).

So, the week before last, Izzy and I had planned a road trip to Indiana to visit my parents and my Grandma and some friends. Joacim was headed to Canada for a fishing trip, and we didn't have any appointments in a 6-day stretch, so we figured "why not?". We headed out Tuesday, late morning. We were less than an hour into our drive, just on the other side of the Twin Cities but not yet in Wisconsin, and Izzy was having problems getting her new bluetooth headphones to connect to my iPad because she wanted to watch a movie. I knew this was something I couldn't do while driving, so I hopped off on the Radio Drive exit in Woodbury, pulled over to the side where there was plenty of space, and fixed the pairing issue. We got all settled again, re-entered that exit ramp, and got in the lane to go straight across to get back onto the interstate. The light had just turned yellow but I was already committed and then WHAM! A car hit us on the passenger side.

First of all, we're ok. Everyone involved. Izzy was shaken up (rightfully) but once she realized she was ok, she was a champ considering the scariness of the situation. My first thoughts after the accident were (in this order):

Shit. Did I run a red light?
Shit shit..Joacim's going to kill me because he's not going to be able to go on his fishing trip (he didn't go one other year because I had pneumonia)
Shit Shit SHIIIIIIIT. I ruined Joacim's car!!!!

We were driving the Volvo. THANKFULLY....that thing is built like a tank, and the impact was not as jarring as I had always imagined. That being said, a week later, I'm feeling some of the effects from the wreck. The back pain was substantially worse after it. I got everything checked out at Urgent Care the next day, and I started going to the chiropractor and getting massages this week.

But it's totaled. Gone. Kaput. Bye Bye. Sayonara.....

Our car (and me taking a picture of it)

her car

I remember crossing the intersection and hearing a horn honk, so turned my head to the right and all I saw was a car smashing into us. That car was going at a decent speed, so we continued to move forward and to the left, across the intersection, after she hit us. The entire time I'm just focusing on trying to keep our car relatively straight because there's a fence on the left-side that I was trying to avoid because I didn't want to be trapped in the car. We didn't see her coming, didn't even have a chance to apply the brake or anything. She hit the door of the passenger side, and then wrapped around to the passenger seat. Side airbags deployed on our car, and the steering wheel bags deployed on hers.

When we came to a stop, I got out of the car, pried Izzy's door open to get her out and then checked on the woman in the other car. She said she was okay....a little dazed but ok. And then all of a sudden there was another person there (who ended up being a witness to it all) and then the sheriff. Izzy and I were whisked away back to the car to answer some questions by the community service officers. Am ambulance and a fire truck (I think) showed up to make sure we were all okay as well. I called Joacim to tell him what happened, and I'm so glad he was still at home. While he drove to pick us up, the tow truck showed up, we got our personal belongings like my purse and Izzy's backpack and our cooler, and the community offers dropped us off at the Cabela's across the street to wait.

The car was stuffed with 9 boxes of dialysate, the machine itself, the compression vest, a large suitcase for supplies, and two small ones for Izzy and my stuff. It all had to stay in the car while being towed, which meant Joacim had to pick us up, and THEN drive us to the towing place to get out stuff. I had to file the insurance claim while waiting at Cabela's (while Izzy and I sat outside and ate all of our road trip candy :), and then we had to deal with permission to remove our stuff and permission to move the vehicle and on and on and on.

Gawd...I'm amazed at what we got done. In 2 1/2 hours I had a wreck, filed an insurance claim, got all of our stuff out of the car in Stillwater, drove an hour home and unpacked ourselves and packed Joacim, and got him going on his trip. We left all of the dialysate in the car in the tow yard because the Jeep isn't big enough to put everything into. Not terribly important because I can easily get more, but it's annoying that I have to.

I've done all of the insurance interviews, and we already got the cheque from State Farm for the Volvo, so this week has been spent car hunting, which isn't as fun when being forced into it. We've been looking at cars for awhile because we knew we'd have to get one to replace the Volvo in a year or two, but we weren't planning on doing it this summer. It's so scary now that I'm not working, and I'm so unsure of everything.

kinda of a shitshow day

noreply@blogger.com (Storaloppan) — Tue, 17 Jul 2018 08:21:00 +0000

It feels like everything took a turn for the worse, or maybe not, but at the end of the day, I had very few answers to things that I had placed a lot of hope resolving.

The day started out with going to our dentist to get Izzy's tooth pulled. I can't believe that I miss the days when my own dad would just make me let him pull them out, but that's just not a battle I want to fight with Izzy, because it WOULD be a very dramatic battle. So off to the dentist we went. I don't think she realized it would hurt, which is weird because it isn't the first tooth we've had pulled, but maybe this is the first one that actually hurt. She cried gentle tears all the way home, and then for the next half hour, and NOTHING I did/said could console here. I was a little taken aback at the emotional outburst...I think I did a poor job of handling her sensitive nature. I just think sometimes that I'm so ill-equipped for all of the emotional outburst that are headed my way in the very near future. The last week has been full of them, and I honestly can't tell if it's hormonal things starting or if it's just her feeling a lack of attention. Somedays I'm so checked-out that I don't hear half of what she says...I'm just trying to get through the end of the day so I can go to bed, but that's also a terrible feeling with the amount of guilt that goes along with it. I sure hope the tooth fairy doesn't forget to visit like she did the last time ;)

She's fine now and sleeping in my bed because Joacim moved to the spare bedroom again to get a good nights sleep. Those are hard to come by for us lately due to the intense coughing, and on dialysis nights it's even worse because of the incessant beeping. Nearly every time, through the middle of the 8-hour run, it starts pinging with an alarm from a kinked tubing that's nearly impossible to find initially in a sleepy stupor. It seems unavoidable due do my current setup, which means I'm going to have to change it in order to increase the chance that it won't keep happening..

I'm coughing all the time now....sometimes it's productive and there's mucous I can cough out, which helps (but is gross in a million ways and unacceptable/impossible in certain social situations). Other times it's dry and related to a tickle somewhere in my throat and chest. The mucous that I have (and will always have due to bronchiectasis) changes daily too. Some days it's loose but there's a lot of it, and other days its hard and sticky and very difficult to cough up. I call this mucous plugging, and I can feel it with every breath...probably one of the most annoying things that happen because it's in my ear all the time. It's probably caused by dehydration, but I'm pretty limited on how much fluid I can take it because, at the end of the day, the only way that fluid comes our is through a 15 gauge (i.e. HUGE) needle. And now, on dialysis days, I've been waking up 2 hours or so from when the run is actually over, so I just have to lie here and think about all this crappy stuff floating around in my head until it's over. Winter will be better because it'll still be dark, but I really need some light blocking curtains in my bedroom. I have the blackout blinds, but they don't fit perfectly and there are still some gaps that I need to address, but that means I have to pick curtains. It took me 6 years to find curtains for our loft so I'm not holding out a lot of hope that I'll get this done in the next decade.

I realize Im rambling a little....it's just there were a lot of unrelated things today and I haven't updated in while and it's all just dripping from my brain.

So, onto my most pressing issue right now. A little timeline on all of the appointments/procedures/hospitilizations due to bronchiectasis since the beginning of the year:

1/19 - hospitalization for pneumonia
1/30 - office visit for follow-up to pneumonia
4/30 - office visit for lower-respiratory infection (pneumonia)
5/15 - outpatient bronchoscopy
6/4 - office visit for pneumonia
6/11 - hospitalization for pneumonia
6/13 - inpatient bronchoscopy
6/29 - outpatient bronchoscopy

As you can see, there have been a LOT of issues with my lungs and a LOT of visits to Methodist hospital to try to remedy them. This most recent episode started on 7/6 with the beginning of some pain in my upper right back, right next to my rib cage. It was mild at first....honestly I thought it was a kink in my back or a muscle spasm, but not a big deal. My breathing was better than it had been in weeks, and I was entertaining the idea of FINALLY returning to yoga after a hiatus since Izzy got out of school. I started taking Tylenol, did a little foam rolling and stretching, but it just kept getting more painful, and it started to affect my ability to cough, which is crucial to bronchiectasis management for mucous removal. So by the following Wednesday, I was in so much pain that I went to Urgent Care. It was starting to feel like more of a lung issue, but getting into my pulmonologist isn't easy so I went there instead. Good doctor, listened to my history and symptoms and did a chest X-ray that still showed pneumonia (but in my left lung which is where it was found on 6/4, but after several weeks of antibiotics and a hospitalization). Worse, the Xray showed nothing of note in the area where my pain was. The urgent care doc prescribed a muscle relaxer because he thought my acute pain was muscle spasms and some lidocaine patches, but suggested I update my pulmonologist, which I did that evening when I got home. I didn't get a call back until Thursday because my pulmonologist was in hospital that week and it's always hard to get a quick response because she's so busy, but we got an appointment with her for today and they were able to squeeze a CT scan in for me so we could have some better pictures than an x-ray can provide for these kind of things.

So all this past weekend long I'm dealing with some pretty intense pain....breathtaking as I've described to anyone who'll listen. No position is comfortable, nothing works to dull the pain, bras are excruciating and I feel this with every breath. Bending over is THE WORST. Nothing I've tried has helped at all, and it's starting to wear on me. But I've also tried to maintain a drop of hope because the radiologist reviewing my urgent care x-ray from last saw the pneumonia, but also thought he saw a pleural effusion in my area of pain, so I was hopeful that the CT scan would confirm the same thing and then we'd figure out next steps.

But dammit all to hell, nothing showed up of significance related to my pain. And worse yet, my pneumonia is worse and in both lungs now. I don't seem to grow any specific bacteria in my cultures that they get from the bronchoscopies....it just shows their's anerobic microbes in there, which indicates aspiration while sleeping due to GI issues. She asked a lot of questions to try to rule things out, and we've tested my immuoglobulines (which are completely normal), but honestly, nothing seems different. There's no obvious explanations as to why I keep getting these bilateral lower lobe infiltrates....it's not normal, which means there are no answers today. She suggested I get a full-body wedge for the bed, even though I have an adjustable bed, because even the bend at the waist from my bed could cause some abdominal pressure that could cause GERD-like symptoms. I've got an esophagram scheduled for 2 weeks to see how my body swallows and if there's anything that could be causing food or acid to be getting back up throat that could mimic the aspiration typical of that anaerobic culture. It all feels like an incredible long shot, but I'll go down whatever rabbit hole is necessary in order to get the bottom of it. And also a follow-up x-ray in 4 weeks to see if the pneumonia is resolved with 14 more days of antibiotics and some percocet to help with the pain. Antibiotics are dosed differently for dialysis patients...we get them every 2 days as opposed to every day for other people. I'm not sure if that means that they work slower in dialysis patients or what....it was something I forgot to ask when I went in. And Dr. Google was really not helpful today and I"m feeling a bit defeated, I can handle a lot, but this level of pain for this length of time is starting to wear on me. What I feel, in the long run, is that I'm going to be adding a GI doctor to my list of specialists that so far include nephrology, ENT and pulmonology.

My pulmonologist called in the percocet prescription in while I was in the room with her, and when she stepped out my pharmacy called to say that the requested dosage they didn't have and was abnormal, so I asked my doctor's nurse if she's make sure to get the message to my doctor. Since it's a narcotic, I know she's the only one who can fix this, but OF COURSE, when I went to pick up the prescription after Izzy's gymnastics practice tonight, it wasn't there. The amount of shit that I have to do just to pick up the medical pieces that other people are missing is staggering, exhausting and infuriating. It's all the fucking time now. A similar thing happened at Urgent care with lidocaine patches needing some prior authorization from a doctor. Again, pharmacy called for a follow-up to the doctor, but he never got back to them, which means I didn't get them. And honestly, I'm sick to death of trying to get a hold of doctors through their office staff....it's just taking too damn much emotional effort right now. Can't they just hold up their end of the bargain and FIX things without me ALWAYS having get a few follow-up calls from me????? Please? Luckily I had some leftover oxycodone to try to help with pain management, but that also means I'm going to be fighting some pretty severe constipation soon.

My life isn't easy. Here's my daily regimen JUST to maintain my current state of shitty health:

dialysis 4 nights a week
sinus rinse 2-4 times a day, which includes an antibiotic component that has to be refrigerated and thus not easy to remember to add
2 inhalers twice a day
nebulizer
compression vest therapy 2x/day for 20 minutes

I just feel it all spiraling...there's no relief.....no health security to even make a loosely-planned drive to Indiana right now because I"m scared something will happen while I"m there and I won't have my care team.

The only good thing today was the beautiful weather and I completed 2 applications to be a dog/cat foster.

The irony is not lost on me that I thought FSGS and dialysis would be the worst obstacles I have to face. This lung disease is so much worse right now.

Catching up....

noreply@blogger.com (Storaloppan) — Wed, 11 Apr 2018 05:52:00 +0000

I gotta be honest....I don't feel much like posting here lately. So many times I start writing the post kind of "in my head" but it all starts to sound stupid and self-centered. I ask my self questions like "why in the hell do I think anyone actually wants to read any of this?" and then that pretty much kills any ambition I have.

Another reason I don't feel like posting is because things are going pretty OK right now, honestly, and this is the place I come to to vent or rage, and I don't have a lot of that right now. But in all of the reading that I used to do on all of the kidney blogs that I used to follow, I noticed that, when all the drama was over (for the most part) they all stopped blogging, and that frustrated me. I wanted to know what they were doing....all of the little mundane things after all of the monumental crises....I wanted to hear stories of their new normal and the journey as to how they got there....I needed to know that it was possible to live again on the other side of transplant or dialysis. So knowing this, I'm going to work on becoming a more frequent poster again. Even if it's literally the mot mundane things ever.

I'm a lot frustrated at myself for the entire last year, especially when I realize how far I've come. We went on a pretty significant walk tonight with Rosie, and I kept thinking in my head "I couldn't do this last year because I was SO sick". So many things happened in the last year....one of my best friends came to visit me with her family for a few days and it was incredible, another friend of mine decided that her life was much better without me in it and it's hurt me more than I can describe. I've tackled doing hemo at home, and we finally took a vacation that required me to dialyze while on it, and I finally got back to doing hot yoga again and none of these are really documented well in this blog. I will forever kick myself for not writing about it, but there were times that I just couldn't, and other times where I just didn't care enough about anything. I was seriously depressed for part of it, medicated myself, and then finally saw light again.

My best friend and her family with my family during their visit last year

We just got back from vacation last week, and it was probably the most important thing I've done lately. It gave me the confidence, and it made the world big again. I was feeling SO restricted by dialysis, and focusing on all of the things I wouldn't be able to do because the travel aspect just seemed to be too much. But I found a woman who's been dialyzing for years, and called her up....she helped me so much!! And I sure as hell didn't spend time during the day thinking about dialyzing. Our days were filled with so much walking that I was actually a little relieved have an excuse to just sit down for a few hours at the end of the day :)

I am suffering a bit from a fairly intense, dry tickle cough that I've had for months. It'll get better for a couple of weeks in the midst of antibiotic, but it keeps coming back. I've thought the entire time that it's because of my sinus issues (of which I'm getting surgically remedied on Friday....at least I'm hoping for some remedy) but I did some research today and think it may just be one of the shittiest side effects from my bronchiectasis. I put in a call to my pulmonologist, who is, of course, not in this week, so we'll see what she has to say. I honestly get sick to death of dealing with medical crap now that I let things go WAY too long, and then by the time I get a hold of the doctor I'm in a full-blown panic, yet this is the first they're hearing of it and are kinda blindsided by my frustration. I'm sure there's not much that can be done for this cough, but I hope not. Joacim has essentially moved into the spare bedroom now because I cough about every 15 minutes ALL NIGHT LONG. I cough so hard that I vomit. Frequently. It sucks all to hell. I need it to get humid again, because I never seem to cough in the shower, so I'm hoping humidity helps....it's been brutally dry this winter.

My blood pressure is SUPER LOW now, sadly not from the removal of my kidneys but due to a new med. Now it's a little too low and is causing some dialysis issues, but we'll work on weaning off of some or lowering the doses to figure out what the sweet spot is. I just cannulated my fistula in the area from my January surgery and it's going well...pressures are good. I should have a buttonhole established by next week, and then hope to start training for nocturnal dialysis.

I did get to do a fun thing last week with the NKF. Optum is a healthcare company based here by me, and they have a team of people who were putting together bags full of goodies for dialysis patients that they were going to deliver to city clinics. I went there to talk to them all about my story and what it's like for me on dialysis. I didn't have a prepared talk...kinda just went from the hip on this, but it went well. I got great questions and overall really great engagement from everyone. Didn't think I could do that a year ago either, but look how far I've come......I hope to get the chance to do a lot more speaking events in the future.

And now a bunch of vacation photos because they're fun and happy :)

Dialyzer (101lbs) and medical supplies (54lbs)

diaysate delivery

first vacation session

First impression of Harry Potter World: AWESOME!!

Ice cream break

Train to Diagon Alley

Talking photos in Hogswarth

Wet clothes from a ride that, according to Joacim, "we wouldn't get too wet on" ;)

Giant connect 4 at the hotel pool area one night...

Family selfie on the first day at Volcano Bay

Funniest activity with Sue the Raptor

Good to see smiles....

Volcano Bay was amazing

Obligatory family selfie at the end of the day

Boxes of dialysate delivered the day before arrival

First vacation session...

Fistula ultrasound and all the worries, again :(

noreply@blogger.com (Storaloppan) — Sat, 03 Mar 2018 04:32:00 +0000

It's been a little over a month since my fistula surgery, and I had my ultrasound this past Wednesday. I went into this thing thinking only that they were going to tell me that everything was good to go and that the fistula was ready to use on the lower end. The thrill and the bruit are super-strong again, so it never even occurred to me that this wouldn't be the result. Methinks I might have been wrong.

The ultrasound took 1 1/2 hours....anyone that's ever had an ultrasound knows that that's a LONG ultrasound. The radiologist appeared to be relatively new, at least to AV fistula ultrasounds, and had to call in a different radiologist on 3 separate occasions. Already, my spider-sense was armed....whether it's right or not, I'm instantly thinking that she was doing it wrong, and so any result is in jeopardy.

I thought the ultrasound was only going to be on the part that was operated on, but it started all the way up in my neck...actually the left side of my neck, then the right side, around my collar bone, through my upper and then lower arm. Once it was done, I went to another clinic room because there were some leftover stitches that I asked to have removed by a nurse. I had tried to do this at home, but no amount of tugging was budging them....even Joacim had a go at them, but then we both worried that we were doing more damage than anything else, so I asked them to do it when I got to the ultrasound.

After they were removed, a totally different person came in the room with a rudimentary drawing that shows the upper part of a body, with a couple of darkened areas on the right arm. She briefly mentions the "bad news" in that there's stenosis (narrowing) in 2 separate places. Ummmmm....what???? Did the surgery not work? Did they even ultrasound the right part? Where, EXACTLY, is the stenosis? Now at this point, I know it does me no good to ask her any questions because all of these places pretty strictly forbid radiologists from commenting on ultrasounds. She told me to go home and that she'd call me later, but I wasn't having any of that. I mean, what's the point? What is she going to tell me over the phone? Was she going to point at this ridiculous drawing and try to explain to me where the stenosis is? I mean, fistulas are a pretty complicated beast....I wanted to go over the results with a doctor; in the same room, so he could tell me exactly where the stenosis is. So that's what we scheduled, which will be this Monday at 8:45am.

I'm so fucking nervous for this appointment. That ultrasound wrecked my day, much like lab results used to do at Mayo near the end of my treatment there. As the day went on, my thoughts kept spiraling, and I had worked myself into a pretty heightened state of anxiety by the end of it. As I understand it, there are 3 possible scenarios that we'll discuss:

fistulagram and/or stent : essentially, another rotor-rooter of my fistula and possibly a mesh stent to keep open the area (but they can't stent a particularly long section, which is my issue, and why this seems an unlikely option)
replace fistula with graft - grafts are artificial veins...they are prone to infection, and I can't use buttonholes with it. They also don't last as long as fistulas.
new fistula in new location - this would likely be my upper right arm. I have no idea how I would cannulate this are myself, or take out the needs at the end of a run, without making an unholy mess. I worry about how it would feel, having that fistula on my inner arm....I would constantly be rubbing against it and I fear it'd drive me batshit crazy.

Options 2 and 3 would be absolutely crushing to me, but it's something that could happen. I have no idea how I'll handle it. The thing is that this fistula is still pretty new...I mean, it's only a little over a year old. There are so many people that have fistulas that are 20 years old, and I thought I'd be one of those. The thought of getting a new fistula only a year into a lifetime of dialysis is so scary to me...I mean, once you run out of places, what do you do? Do you die? The end? Do I give up? Is it life with a chest catheter? Oh fuck...I just don't know. And I'm going to fret about this until Monday. Even after my appointment, I'm not sure if I'm going to be settled on the answer. I've considered contacting my surgeon at Mayo Clinic again...I'll have to see how it goes on Monday before I decide that.

Shit, is this going to affect my vacation? I mean, we leave in 3 weeks. It took 40 minutes for my arterial buttonhole to stop bleeding today.....40 minutes is a really long time when you're holding pressure, and when you're late for your doctor's appoinment, which I was :( It's never taken 40 minutes before...usually 5 minutes....15 tops. But 40??? Dr. Google says that "prolonged bleeding" is an indication of stenosis...this isn't looking good.

This crappy news has me in a complete fog now...I mean a serious brain fog. All I can do is stare at the TV...I can't read a book or do anything that requires brain power. Hell, I can't even organize a closet right now because my brain is just not working. Based off of my numbers, I'm getting adequate dialysis....is this the anxiety that's wrecking things? It just feels like there's never going to be any significant period of stability in this whole nightmare. I thought I'd be talking to my team about starting nocturnal home hemo, and returning to some normalcy in my life. Now everything is completely up in the air again....

What's new?

noreply@blogger.com (Storaloppan) — Tue, 27 Feb 2018 04:57:00 +0000

So....what's new in my world, you might ask? Well...not a whole heck of a lot. I'm still going stir crazy in this house. I'm still not willing to take Zoloft. I've sucked at meditation. I started back up with yoga. I even jumped in like I said I wasn't going to and took the huge step of taking not one, but TWO classes at Lifetime....one of them was a very slow yin-like class where you hold a few poses for a long time....GREAT STRETCHING. But then the class right after that was by an instructor I knew, so even though it was a flow vinyasa, I knew I could rest at anytime and I was excited because I really liked this instructor. I didn't make it through every pose and sequence in the class, but I didn't give up either, and that always feels good.

It's a lot harder right now to try to start up yoga because I'm so terribly anemic. The last time my hemoglobin was checked it was at 7.1....super close to needing a transfusion. I declined it at this time, hoping the EPO and venofer will do the trick. Being this anemia makes it feel like my muscles don't respond when I ask them to....it's like walking through honey sometimes. And the recovery is twice as long....my body was SO sore from yoga last week that I had to take 3 days off. I did tiny amounts of stretching on those off days, but WOW, this is going to take forever to get back into shape. But I'll get there, dammit. I try not to mentally abuse myself when I don't do it every day because, if there's one thing I've got, it's time.

In the meantime, Izzy's sick. This kid has NEVER been this sick for this long. She's missed 2 days of school already, and will miss tomorrow as well. I took her to urgent care, fearing the flu, but luckily it's just a viral infection that needs to run it's course. I guess it's times like these that I'm thankful I'm not working.

While we were sitting in urgent care, I could feel my bronchiectasis acting up in my lungs....the mucous was growing and my oxygen sats were decreasing rapidly. I kept thinking that I was going to end up in the hospital myself in a day or two, so I came home and did a breathing treatment with the nebulizer and compression vest. Those things work wonders, because I was actually better this morning and much less fearful of another hospital stay.

I seem to be having some serious issues walking up/down the stairs lately. I think I've fallen 3 times in as many weeks, and I can't tell you why. Today was the scariest, by far. I slid down 3 or 4 of them on the area that had the vein harvested and broke open the incision at the top. This was literally right after dialysis, and maybe there was some shock involved, but I was certain that I had royally screwed up something. I was on my way to my ENT appointment at the U of MN, so I had to cancel that (which sucks because this specialist worked me in to deal with the never ending tickle I have in the back of my throat and she might think I'm a complete flake of a patient and not see me again :(. I called the vascular center because I think they should've brought me in to check it out, but they told me to go to urgent care and I was like, "Well, if they don't think it's that big of a deal, then neither will I". That may not have been my smartest move, but so far so good. This is the underside of mt arm, where they harvested the vein for my fistula. No serious bruising, and the would closed up again on it's own. It's sore and bruised inside, but I think it'll be okay. If it was my fistula, this would've been a totally different tale, but thankfully it wasn't.

My toes, on the other hand, took beating. You can see, although not the greatest, that there's some pretty good bruising starting to form on my pinkie and the toe next to my big toe. It hurts like hell....even putting a blanket on it is painful, so it looks like I'll be keeping that foot out of the covers tonight. I just can't understand why I'm so clumsy on the stairs lately....I mean it's honestly strange....

I've decided to wait to try nocturnal hemo until after I get back from vacation. I decided that I don't want to train on it, and then end up reverting back to daytime hemo while on vacation because I'm nervous anyway, or try nocturnal on vacation and have it go badly so as to affect our vacation, so the plan is to start right away on it when I'm back. Yay....just in time for summer!!!

Life without my Murphy has been sad. It's so quiet in this house. We had him cremated, and I'll be honest in saying that I felt so much better when he was returned to us for forever in his beautiful little box. I can say good morning to him every day, just like before. I don't give a crap how weird that sounds....it's good to have him home again. I am seriously thinking about fostering now. I have thought about it in the past, but it didn't make sense with two dogs and a cat already. But now I think I have the time and we have the space. I want to wait until it's a bit warm out, because I don't want all of the walking duties to fall onto Joacim. He's not totally into this fostering thing yet because I'm sure he worries that he'll end up doing all the work. I can't blame him :) But our neighbors just started fostering this week, and she's the cutest pup ever! I'm lucky to be able to help out with potty breaks, where I get my share of puppy breath and sharp puppy teeth. It just might be the thing I need to push me back over that edge.....

Have I mentioned that I'm still going bat-shit crazy in this house? Have I mentioned that we've gotten about a foot of snow since the last time I posted? I mean, it's super-pretty, and awesome having all of this snow, but with Izzy being sick and me possibly with broken toes, I'm not sure we're going to be able to take advantage of it. I had hoped to try out snowshoeing or cross country skiing this weekend...guess we'll have to wait and see!

All the sad, all the worries

noreply@blogger.com (Storaloppan) — Fri, 09 Feb 2018 04:00:00 +0000

As many know from my social media posts, this last week has been particularly difficult. Last Wednesday, we had to say goodbye to my faithful companion of 12 years....our dog Murphy. He was my best bud, my 2nd longest roommate, the first dog that we raised as a family. He was there through the rough parts of FSGS (prednisone, moonface, crushing lack of self-esteem), when I was pregnant with Izzy and happy about everything....he was right there in our bedroom the night we brought Izzy home from the hospital (although initially probably not thrilled about it). He was there waiting for me to come home from Mayo, and has been my constant dialysis companion since I started doing it at home back in November.

Man, the number of hours that we spent playing with him as a pup because he was so high-energy.....I mean, there'll never be another dog that will get that time and attention from us. In his older years he became such a distinguished gentleman, with his gray beard and soulful eyes. I could talk to him....tell him everything that was on my mind, and the only thing he requested in return was constant affection. I couldn't imagine how difficult it has been to say goodbye to him.....

I've been struggling a lot, emotionally, and this last week feels like it tipped me over the edge. The first question my nephrologist asked me on Monday was, "Are you down?". I guess it even shows in my physical appearance. The waterworks flew for a bit, and she was kind and listened. She suggested I start back up on Zoloft, but I'm hesitant because I felt nothing. I stopped taking it last November, in part because I new my time with Murphy was coming to an end, and I wanted to cry about it. I wanted to feel all the feels. I wanted to honor him as he had been such a sweet companion to me.

But I don't want to start back up on the Zoloft....not yet at least. I'm going to try to set aside time every day, even if it's just 5 minutes right now, to meditate. I'm also going to see what I can do to start getting back into yoga. I've done it the past 2 days, and I'll admit I was surprised at how sore I am, but I need to push through it. I think, in the long run, it's going to make me feel so much better, both mentally and physically. My body doesn't have much range of motion anymore because of all of the sitting/laying I've done over the last 2 years. I'd love to just jump into a class at Lifetime, but I swear I think I'd either pull every muscle in my body or have a heart attack, so I figure I'm going to baby-step back into it. I have a membership at yogadownload.com, and they have a TON of classes to fit my needs as I'm building up my strength again. I do, however, look forward to when I feel strong enough to go back to a hot yoga class. Those classes are so damn "cleansing" for my brain, and I push myself so much harder in a class setting than I ever will here at home. And I need any excuse to get the hell out of this house.

I'm going batshit stir crazy in this house. I'm here all the f-ing time. I look for useless reasons to leave all the time (except this last week....I think I needed to spend as much time at home as I could with our other pup, Rosie). February, in general, is a difficult month to get through....it's just so cold here, and the cold starts to seep in everywhere. I'm freezing inside all the time, so I find myself moving less and less, just so I can be in front of a heater/fireplace or on a heating pad....anything to stay warm except actually moving. It's just too cold to be outside for long, so we're all stuck here a lot more than we'd like

It feels like dialysis takes up so much of my day....it's really wrecking any sense of control that I have over my life. I am wanting to switch to nocturnal hemo at home. It would still be 5 days a week, but it would be a 6-8 hour run overnight. Maybe that's what I loved about PD....it was overnight and didn't seem intrusive at all. I'm worried about keeping the needles secure and not making an unholy mess, but lots of other people do it, so I figure I can too. But I can't make any progress on this until my fistula is fully healed, which I'll find out about on Feb 28th when I return for an ultrasound. Then I can establish new buttonholes on my forearm again, which will be much easier to secure. It's healing decently though...

Many people have asked about my blood pressures. Well, I'm sad/angry to report that they're truly awful. Just as bad as before. I have no idea why the nephrectomy didn't do anything to affect them, and I now think I'll forever feel like a ticking time bomb. I'm back on nearly all the meds, except the one that caused excessive hair growth, but it won't be too far behind at this rate. Fuck, it's scary with these blood pressures....I just wish I knew there was something else to try, but there just isn't.

On a lighter note, I'm taking a trip, leaving tomorrow. Nephcure, which is the organization dedicated to finding a cure for nephrotic syndrome, MCD and FSGS, is hosting a leadership conference in Dallas, Texas this weekend. I have been completely shying away from any opportunity like this because I just didn't feel like I was in the right mental frame of mind to do anything positive. I'm not sure if I'm there yet, but I'm hoping this weekend will be the kick in the pants I need to reengage in my life. I'm nervous to travel, although I have no idea why. I have to get up at an ungodly hour tomorrow morning to fit dialysis in before I fly out. This will allow me to take this trip without having to worry about dialyzing while there, which is a HUGE relief. Of course, I'll get off the plane on Sunday, come home and have to dialyze again, but at least it'll be at home, and I don't have to stress about that stuff. Wish me luck!

AV Fistula surgery follow-up and other odds and ends (contains some graphic images...you've been warned).

noreply@blogger.com (Storaloppan) — Fri, 09 Feb 2018 03:55:00 +0000

I've got a whole bunch of emotions that I'm dealing with right now, and I don't even know where to begin. Whenever this happens, I turn to the photostream on my phone to help me get started (which explains why this post is so picture-heavy :) I figure that (maybe) if I start writing things about these photos, then all of the other emotions may come to the surface and slowly seen out. This blog is my therapy and I'm in desperate need of some.

This is my friend Mindy. We "met" a fear years ago on a blog of someone we both followed. I don't even remember the exact way it happened, but we discovered we were both in Minnesota, and our friendship grew slowly from there. We've had lunch a few times here in the cities when she and her family come down (they're in the northern part of Minnesota), but this time she offered to come and help out with my fistula surgery (since I was so hammered from my nephrectomy), and I took her up on it. It's never easy for me, or us as a family, to accept help, but it's something we know we need to work on.

Mindy is the kindest soul...what I love about her is how positive she is and how openly appreciative she is of her friends! She's a transplant here too (from Vegas), and I've often marveled at how easy it is for her to make friends, which is something I've struggled with here. Anyway, it was really great having here here...Joacim and Izzy loved her as well, and we're all looking forward to seeing her again soon!

These are pictures from surgery day. The original plan was for general anesthesia, but I had had one terrible experience with that prior, and that was enough for the anesthesiologist to think differently, and I ended up with a nerve block. This is the doctor using an ultrasound machine to find the nerve in my neck/shoulder to block the full length of my arm.

I'll admit that I was REALLY nervous about this surgery. Partly because I wasn't even healed from the one I'd had 8 days prior, but also because the last time I had a surgery on my fistula was incredibly painful....I mean the WORST. But having this nerve block changed everything. I woke up happy and smiling and requesting a popsicle :)

And I was amazed that I could use it the next day. I had started creating new buttonholes the week before in preparation for the surgery, and they worked fine the day after surgery, even though one of them was SO close to the incision.

The surgery scars initially after are pretty ugly. This was the first time that I'd had actual stitches in all of the surgeries I've had in the last 2 years...usually it was just stern-strips keeping everything closed.

This is the vein they took to repair the actual fistula.

Random addition to this post, but we finally had a real snow day....around 9" of beautiful snow!!!

Ahhh....and here are my buddies....I love these pups....

Our neighbor brought over her old snowboard for Izzy to try....she's quite a natural athlete, but the gymnastics training she's been doing for the last 5 years has been superd-helpful for her balance.

NOW FOR THE GRAPHIC IMAGES PART!!! DON'T LOOK ANY FURTHER IF YOU'RE QUEASY AT THE SIGHT OF BLOOD......

So the other day while dialyzing, I noticed that the venous (return) needle was starting to "back out" from the pressure. I didn't have it secured properly and needed more tape, so I reached over my arm to get the roll of tape, and the whole needle came out while the machine was running. I spent a good 4-5 seconds panicking and then just starting closing any clamp that was close. That wasn't working so I just stopped the machine entirely. Holy shit, that was a lot of blood. The venous site was spewing blood, as was the dislodged needle....all over the chair, heating pad, my face and hair. There aren't a lot of things grosser than being covered in your own warm, sticky blood. Ahhh...a day in the life of a dialysis patient. Luckily I usually only make these mistakes once ;)

Post-op from nephrectomy

noreply@blogger.com (Storaloppan) — Fri, 09 Feb 2018 02:16:00 +0000

It's been a long time since I posted here....I'm not going to even try to catch everyone up, so let's just dive in, ok?

Anyone who ever tries to minimize the "majorness" of a bilateral (both sides) nephrectomy (kidney removal) can fuck the hell off. Never listen to a surgeon, who seems to equate any surgery to a dental cleaning. I vaguely remember hearing one of the nurses is post-op mention that this is considered a same-day surgery, meaning most people leave the same day (and that she thought I was being dramatic when describing my pain). Fuck off whoever the hell you were. Fuck. Off.

Since I've been away from a hospital for a whole 2 months and away from any kind of a surgery for a year (except sinus surgery back in August), I had blocked out a lot of the memories of how bad physical pain feels. Not being able to put your socks on because you can't engage your stomach muscles....an abdomen so full of gas that any position feels like you're being stabbed with a thousand tiny knives....vascillating between sleeping and being awake.....feeling nausea and begging all forces in the universe to stop it because you fear your guts may fall out if you vomit. Yep, all of it came rushing back to me, and it's not over yet because I will probably have another surgery later this week or early next week. I'll get to that in a second...

So I'm home now, which is good, but it isn't restful. Joacim and Izzy aren't reading my mind every second wondering how they can help me, and when you actually have to verbalize to another person everything you want, you sound ridiculous and demanding. Which is why I usually end up doing things myself. I get mad because they don't know what I want, and sometimes I get resistance when I ask for something. I'm sure it's annoying to them to have to wait on me, but I don't really get it from them like I wish I could. After this particular surgery, it's really kind of painful to talk, especially to yell to another room, so I just do it myself. It's a particularly shitty part of all of this, at least in this house.

And I'm sure some people might be reading this and wondering "why didn't she ask me for help?"... because I don't want to ask. It's embarrassing. I sound needy and spoiled. I just wish for someone to do it without me having to ask. Joacim still has to go to work...he lost 3 days last week because of my surgery and the snow....he has responsibilities too. And Izzy....poor little Izzy....I mean, she's only 9 but I throw a lot at her, and she doesn't deserve it.

Speaking of Izzy.....I'm a little worried that this last week has had a significant negative effect on her. Because of a series of things, Izzy ended up seeing me right after surgery but before I had really come out of my anesthesia. They took me straight from post-op to dialysis because my potassium was super-high (I'm probably lucky that they did the surgery at all), but I was pretty adamant about not wanting dialysis I recall. I had done it at home the 4 days prior, and I had JUST come out of surgery and was groggy and in an excruciating amount of pain....I didn't have my blunt needles with me and I couldn't have cannulated myself anyway due to the pain, and I think I was delirious. I remember seeing Joacim, with a smile on his face because he came back to the hospital after going home to get Izzy while I was in surgery and has no idea of my mental state, and I remember Izzy trying to tell me that Simone Biles sent her a letter back from a class project and she was so happy. But I was barely listening...I was moaning and crying that I don't WANT to do dialysis....I could see the look on her face that she was scared of what she was seeing, and I couldn't communicate that to Joacim. And I knew all of this in my head, but it was too late and he was too late getting her out of there and it was all just awful.

He took her home, but she cried on the way home, and then a little more at home. Ugh. And then I almost threw up on Friday (and she HATES it when that happens), but even worse today was that she was with me when I drove to see my doctor (yes, driving to see a doctor still has to happen) and I threw up while driving and she was freaking the hell out. I mean, who wouldn't? Who likes to be around someone that's vomiting? But especially when it's your mom. Your mom who is literally driving to the dialysis clinic to meet her nephrologist after she just had her kidney's removed. What can I do? I don't even know why the hell I threw up....I felt fine.....it was weird. Thank god I had an emesis bag handy or it would've been REALLY awful instead of just awful.

Everyone tells me how much compassion she'll have when she's older. I think people say that to make me feel better, and that's fine, but what do I do in the present? How do I help her through this? Am I supposed to just ignore her reactions because "she'll be compassionate when she's older??". Fuck no. THIS part of my whole illness is sucking so much. She needs me, and there are times when I just physically and mentally can't be there. This has always been the case, but now she's old enough to notice and understand that it's scary.

So, did the surgery work? Well, who knows. I don't actually think there's going to be a solid answer to that right now. My BP is back up again, but not as high as it was before the surgery. This could be due to the fact that I literally vomited right before they took it in the clinic today. It could also be higher due to the amount of pain. Whatever the case, I'm going to start taking one BP med tonight and see what happens over the next few days. I have an escalation plan with my doctor if it doesn't go down or rises, so I guess I'll just keep my fingers crossed.

Note: I DO have nausea meds, but understand that I'm not nauseous. I didn't take any pain meds today (because I had to drive and because they cause constipation), and I wasn't feeling sick or nauseous. The vomit comes on in under 10 seconds and then it just....happens.

There were no guarantees that this surgery would work, and there aren't any other options except more meds (many of these with debilitating side effects) if it doesn't. I'm just going to put one foot in front of the other every day and not jump ahead to "what if" it all. Hour by hour, day by day.

This is what my abdomen looks like 5 days post-op. The incision above my belly button is where they took the kidneys out. Yes, I'm still swollen and full of gas. And yes, my belly is terribly hairy, but that's one of those nasty side effects that I was mentioning. I've been taking minoxidil for my BP for the last 2 months, and it works well, but it has the side effect of hair growth. It's also more widely known as Rogaine.

I mentioned "another" surgery earlier. Home hemo is going well, but I've been having some issues with my access lately...my arterial pressures are high, unstable, and getting worse. I had a fistulagram a few weeks ago to try to widen it, but it didn't really work, so now a vascular surgeon is going to harvest another vein from my arm and use it to "patch" a section of my current fistula.

I had an ultrasound on it while I was in the hospital and the tech did a nice mark-up of it to help figure out where the surgeon would actually operate. I needed to know this because I needed to understand where I could no longer cannulate due to the surgery, and I am now trying to develop another buttonhole higher up on my arm. And I'm doing THAT in order to avoid having a chest catheter put in. Dammit....I hate those things, and I'll do damn nearly anything in order to avoid them. It's not hard to create another buttonhole, but the location of this one is right in my elbow and it hurts because, during treatment, I can feel the tip of the needle (using sharps) inside my vein with any arm movement, so all of the relative freedom I've had has gone away right now until it's established (switch back to blunts). This means that I can't really do dialysis at home by myself for ow because I need someone with me the entire time to push buttons on the machine when I need them to (also partly because I have 7 fucking holes in my stomach and I can't get up from the chair to reach the machine while running). Which means I'll go back to doing it in the evening when Joacim and Izzy are home, and that sucks for all of us. I can't lift the dialysate bags right now anyway, so I need Joacim to do that for me the night before I run. But if I'm stuck staying still during the run until I'm healed from this upcoming surgery, then I'm looking at at least 6 weeks, because that's how long it'll take to heal and establish ANOTHER buttonhole. Ugh.

This is a top view of my fistula. The long line is the actual fistula vein itself. The horizontal hash marks are where the surgeon is going to patch. You can see that one of my buttonholes is in this area, which is why I'm working on a new one in my elbow where you can see some work being done there.

This other mark shown here is the location of the vein that will be harvest and used to patch the fistula.

What I am finding now, on this other side of transplant, is to literally try to remain focused on the present. It's sometimes overwhelmingly depressing to look out any further than that. The only time I'm going against that is thinking about a real vacation...I mean longer than 2 nights. We're thinking about taking Izzy to Disneyworld over spring break. It seems like a place that would be great at accommodating my medical needs (doing dialysis in the hotel room with my machine) yet having a ton of things to do for Joacim and Izzy when I need to dialyze. Those of you that really know me understand that this isn't ever a place I've wanted to go in the past...too overwhelming...too busy....too much. But I think, considering I spend at least 15-18 hours a week dealing with dialysis, that it may be a good option to start learning how to vacation again. If there's a day I don't feel well, then they can go swimming. We'll stay on-site to avoid the time lost driving back and forth, and we'll keep our expectations of what to see small. We'll get a meal plan so we don't have to deal with "what's for dinner". I've been in touch with a few awesome friends who have done Disney several times, so I hope it's not too bad. We aren't going to tell Izzy yet....hoping to make it a fantastic surprise for her.

Another surgery this Friday

noreply@blogger.com (Storaloppan) — Wed, 17 Jan 2018 18:55:00 +0000

I met with the vascular surgeon yesterday and things are moving quickly. I've got a revision surgery scheduled for this Friday morning. The plan is still the same. I'm creating 2 new buttonholes because the angles I had the needles in before seemed to be causing a lot of machine alarms during dialysis, so I just decided to create new ones all around. I did it last night and my arterial numbers were a lot better. We also agreed to run at a blood flow rate of 400ml/min, instead of my prescribed 450ml/min, and that makes a difference.

I'm overall feeling better, but the incision used for the removal of my kidneys is so sore. The random vomiting isn't helping (happened again last night as I was standing in the kitchen talking to Joacim about dinner). I started getting nauseous today which sucks, but "yay"...at least some warning to take some medicine to prevent it. I have no idea where it's coming from or why. I'm not eating or drinking much. My blood pressure was really high yesterday, so I added a second dose of the one BP med I had started. I'm just keeping my fingers crossed that it eventually works.

It annoys me when people asked if the surgery worked, and I tell them I'm not sure because my blood pressure is high, and they respond as though I said "no, it didn't work". Ugh, drives me fucking nuts. I didn't say it didn't work. I said that my blood pressure is higher than it was in the hospital. Did it work? I don't have a clue. No one does. But I'm not going to throw in the towel over a few high readings. If I've learned anything through all of this crap I deal with, it's patience. And I don't understand why or how, but I know that sometimes these things just settle out over time. It makes no sense to me that you take a pill and don't see immediate response, but experienced it more times than I can count. So I'm just not going to freak the hell out about anything right now. I had a major surgery, I'm still in pain, and time will tell.

This brings ups something else that I feel like I need to get sometime off my chest. At this time, I'm not looking in to pursuing another transplant. I'm not listed. I don't think about it. But I always feel like I need to defend this decision.

There are other people with FSGS that have had it recur, only to go on to get one or two other transplants. Honestly, when I read their stories, I just wonder "Why in the hell did they do it?" Some of these people didn't have it recur for a few years....some people had the transplant when they were younger, had FSGS recur, went back on dialysis and now are adults and want to try again...some even think that maybe everything wasn't done in order to prevent a recurrence in their case. Whatever the reason, the one thing they all have in common is some hope that things will be different. And maybe that's where I'm different...I mean, I don't really have that hope anymore. I'm not trying to be all melodramatic or anything, I just don't.

I'm confident that my team and I did everything possible to prevent recurrence of my disease. When I look back on those days, there isn't one single thing that I'd change...other than the outcome, of course :) I mean, I did Rituximab, and then switched to hemo from PD, and then plasmapheresis before transplant, and then plasmapheresis after transplant, and more Ritximab, and IVIG.....and just every single thing that I put my body and my mind and my family through, and yet this is my reality now.

I don't know if that helps, but maybe someone will get it and not secretly wonder "for me" whether or not I'm making the right decision. You have no idea how you'll handle it unless it happens to you.

Mother's Day Blues

noreply@blogger.com (Storaloppan) — Mon, 15 May 2017 03:33:00 +0000

Mother's Day, at least for me, never lives up to what I think it's supposed to be.

At this moment, in my current emotional and physical state, I should feel lucky for each and every Mother's Day I get to "celebrate".

I put celebrate in quotation marks because there's really no "celebration" here. There's just Joacim and Izzy, and Joacim usually focuses on a present 3 days before the event, orders something last minute that doesn't arrive for the actual day, and is not necessarily something that I really even thought about wanting. Then they'll go to Target a couple of days before and each get a card. That sounds harsh, but truth hurts sometimes.

My little Izzy came through today...she had made a book of poems in school and they're really cute. There seems to be a strong theme about cooking and cookies throughout all of them. I'm thankful that the theme wasn't sick and dying...glad she's not focusing on those aspects of life at home.

But dammit....it's the partner's job (in this case, Joacim) to teach Izzy why we celebrate Mother's Day, not just at the start of the day, but ALL DAY. It's a day to make Mom's feel special for everything they do. For me on Mother's Day, I just want acknowledgement of these things. I want to know that THEY know what I do that makes me invaluable to this family. I'm really feeling the need to feel valued at home because I'm not contributing anywhere else, and if no one here values me, then sometimes it's hard to figure out the point of all of this.

I feel like I work on that with Izzy when Father's Day comes around. I haven't asked Joacim if he feels I've been successful though, so that's something I should do.

Joacim's birthday is Tuesday and I asked him if he wanted a special dinner and he's like "nah"...

UGGGGGGGGH!

For PETE'S SAKE....we should ALWAYS be celebrating birthdays (all of ours) with fanfare!!! The birthday person should be celebrated!!! I want Izzy's birthday to be the best day of the year for her, every year....that's what I strive for. I'll never be the adult who says, "No, I don't need any presents....." TOTAL LIES! I LOVE ALL THE PRESENTS!!!!! :)

I'm feeling a lot on edge today because my blood pressures have been at stroke level several times this weekend. I've need to take a hard look at my daily sodium intake to see how much I'm really consuming daily and see where I go from there. Hopefully I can get in early again tomorrow for a UF run before dialysis to pull off the extra fluid that I think is due, in part, to a new blood pressure medicine. It's all kind of a nightmare and I'm scared to go to sleep with my BP so high (203/117 at last check at 9:21pm) so I'm going to keep taking clonidine until it goes down enough to sleep. Wish me luck.

There are just so many things....

noreply@blogger.com (Storaloppan) — Thu, 11 May 2017 13:17:00 +0000

Whew.....shit is DIFFICULT right now. Every time I think I'm on an upswing in terms of my health, something happens that crashes it all back to my current hellish reality.

It's 5:07am right now (and on a 2-hr late start for Izzy, no less) and anyone that has met me knows that I'm not a morning person, yet for the last several weeks (maybe even months) I wake up around 4-5 am....sometimes I'm able to go back to sleep, but sometimes not (which is what's happening today). I've been sleeping with the windows open and I wanted to blame it on the little birdies that wake up around 4:430am, but that doesn't seem fair. I actually woke up at around 4:15am because of coughing. I tried to go back to sleep, but my lungs are wheezing so much now that it's impossible. Physically, it's labored breathing. It takes work to inhale to get enough oxygen. Mentally, it's freaking me the hell out because the wheezing and crackling is not getting any better. If anything, it's worse that it's ever been.

Here I am at urgent care Tuesday getting a nebulizer treatment

What is happening to me happens to so many other people (not the coughing and wheezing and lack of sleep). I am stuck in a vicious cycle of seeing multiple doctors, none of whom are communicating to each other. There is no one managing my overall care and seeing me as a person. Here are the number of doctor appointments/trips to Urgent Care/Emergency Room/Hospital admissions that I've had since I started dialysis and the issues they were addressing (or the "diagnoses"):

1/24/17 - regular office visit with PC (just updated meds I was already taking)

Major depressive disorder, Hypothyroidism, Acute Maxillary Sinusitis (regular office visit) with PCP

1/31/7 - Urgent care (prescribed guaifenesin/codeine cough medicine)

Acute cough, congestion (nasal)

2/5/17 - Emergency Room (prescribed doxycycline antibiotic for 7 days)

Upper respiratory infection, pneumonia

2/7/17 - ENT appointment (had a myringotomy performed on left ear)

Eustachian tube disfunction, acute ethmoidal sinusitis, dizziness

2/7/17 - Emergency Room (subsequent admission to hospital...ambulance ride...yay........)

pneumonia

2/7-2/10 - hospital

pneumonia

2/17/17 - hospital follow-up with PCP

hospital discharge follow-up, pneumonia, recurrent sinusitis, ear pressure, snoring, tinnitus

2/23/17 - CT scan of sinuses

3/1/2017 - Pulmonology in prep for sleep study

sleep apnea

3/7/2017 - ENT appointment (new doctor - reviewed CT scan and found that sinuses 95% full)

chronic pansinusitis - referred to allergist

3/14/17 - Allergist

nasal congestion with rhinorrhea (talked about IGG levels and how IVIG infusion may help)

4/13/17 - Urgent care (prescribed tamiflu and levaquin)

tested for flu (negative), clinical pneumonia

4/20/17 - Urgent care (prescribed levaquin, but a higher dose)

another chest x-ray, clinical pneumonia

5/2/17 - IVIG Infusion

5/5/17 - called PCP to prescribe antibiotic over the phone because pneumonia not any better

5/9/17 - Urgent Care (prescribed one-a-day inhaler and nasal spray)

RAD (reactive airway disease) with wheezing, chronic rhinitis

That's 15 appointments/admissions, and they're all surrounding the same thing. Why is that?????? What do I have to do to get someone else to see that this is a problem.

And do you know what the worst part is? I'm not any better...I'd actually say my cough right now is worse than ever. I've had 2 weeks since the end of January where I wasn't having sinus/lung issues, but I'm sure those two weeks were missed due to dialysis sucking. Oh yeah, remember that ALL of these appointments are happening either on Tuesdays or Thursdays because I've had dialysis every Monday, Wednesday and Friday since January 25, 2017. If anyone ever wonders why people on dialysis don't work, this should give you some ideas.

I'm so frustrated. Since leaving Mayo's care, I have honestly just been scared for my life. There isn't a single doctor that I see right now that is looking out for my overall care and that terrifies me. Honestly, I'm scared of dying from a heart attack (from dialysis) or a stroke (from the ridiculously high blood pressure). I found out during yesterday's visit to Urgent care that my last chest x-ray showed that my heart was enlarged. I did a little research and found that this happens with dialysis patients and people who have high blood pressure. The long-term effects are that the heart becomes less and less efficient at pumping blood. That kind of seems like an essential function, and it doesn't look like there's a whole lot I can do about it except get my blood pressure down.

My blood pressure is a whole different issue. As a dialysis patient now, any doctor I talk to about blood pressure INSTANTLY thinks it's a fluid-overload thing. It's ingrained in them and that sucks. That is the case in most dialysis patients (and me sometimes), but the thing is my blood pressure is astronomical no matter what my weight is. I can come off that dialysis machine at my dry weight, and my BP will still be 180/113. Early morning, middle of the day, late at night.....always high. What's stranger to me is that most people during dialysis have issues with their blood pressure dropping too low. That's literally only happened to me 4 times so far. Most people have to put their feet up and recline their chairs to help keep their blood pressure high enough (did you know that lying down is when your BP is the highest??) but not me. I sit in that damn chair with my legs down and the back upright. It's probably the LEAST comfortable chair you can imagine. If I'm lucky I'll get to put my feet up for 1/2 an hour, but then the next BP check will show it jumped right back up and down my legs go (which does great things for the edema around my ankles and feet). Yesterday, I was having a pretty decent run, BP wise, but then near the end it jumps right back up for no apparent reason as nothing has changed in the physical process at that point. Then, during rinse back (when they give you back your remaining blood with a saline flush) it goes higher just because of the extra fluid coming back into my body.

Yesterday's blood pressures

My nephrologist doesn't show enough concern about it. I can contact her via MyChart, and she's great about responding, but she first talks about dry weight (insert eyeroll here) and then prescribes another BP med. The thing is that she never checks up after she's prescribed something. I should be seeing her at least every month in clinic, but that hasn't happened. When you're a dialysis patient, the doctor's come to you, but she can't seem to find the time. I've seen every other dialysis patient's doctor in my clinic, but I've only seen mine twice. MyChart is a poor substitute for in-person visits and conversations, so I've got to make some changes.

Today I'm going to start the process of switching to home hemodialysis. It'll just start with a phone call, but it's a big step. I've been waiting for a longer period of stability, but after 3 1/2 months of nothing but issues I think it's time. Everything I've read and heard tells me that doing hemo at home overnight (nocturnal) will provide me the best quality of life. I'm not sure if that's the route I'll go, but I'm at least going to start the process of figuring it out. This means I'll have to stick myself with those gigantic needles, which sounds awful, but hell, I climbed out on my roof this spring to help Joacim and I am TERRIFIED of heights. So I figure if I did that, I can stick myself with gigantic needles. It's a mind over matter thing, and I think my mind is pretty strong and determined. This also means I'll have to find another nephrologist, which may be a good thing for me (not all nephrologists take on patients who do home dialysis).

Tomorrow, I have an appointment with my PCP again. I'm going to convey my concerns to her and ask what she thinks I should do. She's actually a really great doctor who takes the time to listen, so I'm hoping she has some good suggestions on where to go from here to address the sinus/lung issues. Many may be wondering why I don't go to her every time I'm sick. I would actually prefer to do that, but she schedules out a month ahead, so there isn't a way for me to see her while I'm in the middle of a sickness. I go to the Urgent Care clinic where she is (same system so she can see all of the notes) but that's the best I can do.

May 10 2017 - worries from Jenn Trunk on Vimeo.

May 11 2017 - early morning voice from Jenn Trunk on Vimeo.

Part of me is so self-conscious about these videos because I look so worn. Dialysis is very hard on your body, and on your skin, and it ages you prematurely. There is a man in my clinic who is technically 2 years older than my dad, but he looks like he could be my grandpa. But these videos also remind me of where I am at this time. I often look back on old posts now to see how much has changed.

I posted a few entries last week about my IVIG infusion and arm infiltration (another shit week). The infiltration sucked.....it's painful and terrifying because I didn't understand what could've caused it. Luckily, through United Health Care, I have had access to a dialysis nurse case manager, and she explained it perfectly. Remember me talking about the janky way that the veinous needle was put in by the new tech? I could feel the tip of the needle, and it's likely that she punctured the other side of my fistula when she cannulated me. The needle didn't go all the way through or it would've infiltrated immediately, but it was resting on the surface of the inner vein wall. And 27 minutes in to dialysis, it's likely that my vein moved, causing a vacuum-like effect on the needle against the wall, and then the needle went all the way through causing the infiltration. You see, THIS is good information to have! I mean, the explanation I received at my clinic was "well, sometimes it just happens". Um, no. THAT'S not a reason....that's an excuse.

This was my arm last Thursday at my extra dialysis session

This is my arm today, 7 days after infiltration

There are a few other issues that are concerning to me as well:

I can't smell anything (not even my dogs' breath)
I can't taste anything (not even vinegar)
I've lost at least 1/4 of my hair, and the texture has completely changed
My fingernails are brittle and tissue-thin. I've been getting gel-manicures just to keep them from tearing off of the nail bed, but I may have to stop that soon because taking the gel polish off is causing problems. I'm not sure what my next options is after that. This isn't a vanity thing...this is a pain thing. Imagine all of your fingernails tearing off, leaving your nail bed exposed. Or having your fingernails break in tiny little places along the side, and then getting snagged on every article of clothing you come into contact with. Imagine trying to run your fingers through your hair, and getting stuck because your hair gets caught in the cuts of your fingernails.
I notice than when I'm having more issues with my sinuses then I get migraines during dialysis. The last 2 runs have produced some whopper headaches, and oddly-enough, the thing that eases them is standing up, which is essentially the last thing anyone with a headache wants to do. I was getting OK with going to dialysis, but when the headaches come back, I dread it with every fiber of my being.

Going to dialysis now is getting harder, mentally, because the weather here in Minnesota has been PHENOMENAL the last week or so. Spring is here, and it's glorious. I'm realizing I have no tolerance for heat anymore, so these few weeks we have here before it gets too warm are important to enjoy. That's why leaving for dialysis at 1:45pm sucks. Dialysis sucks. After dialysis has been sucking too. It all sucks.

I'm reading Sheryl Sandberg's new book called "Option B: Facing Adversity, Building Resilience, and Finding Joy". I'd been hearing her interviews in the media about how little she understood grieving until she lost her husband unexpectedly, and this struck a nerve with me because that's what I'm doing every day....grieving the loss of my other life. This book isn't wow-ing me right now because it seems to focus on traumatic events rather than chronic things, but I'm not finished yet so I'll reserve final judgement. I really want to get to the "finding joy" part, because I am really struggling with that. One of the things she (Sandberg) did was to write down 3 things she was grateful for every day, so I'm attempting to do that to see if it makes a difference in my emotional state.

This was a very long post, but I had a lot to say. It's 8:15am, and Izzy's still asleep, so I'm going to go enjoy the silence for a little bit more. Thanks for reading.

I couldn't make it up if I tried

noreply@blogger.com (Storaloppan) — Thu, 04 May 2017 01:07:00 +0000

I went into the clinic early today to get the extra fluid pulled off. There is a new tech at the center (I don't think she's new to being a tech, but she's new to the clinic and is replacing a permanent tech that's been at the center for a few years). Anyway, she stuck me for the first time today, and it felt like a disaster from the beginning. Granted, it's always hard for me to tell what's going to be a disaster because I'm literally fearful of anyone that comes near my fistula that hasn't needled it before. It's fucking terrifying. She got the arterial in just fine, but the veinous needle she put in a completely new position (you can see it's the needle closest to the bottom of the photo below). It didn't hurt, mind you, but it didn't feel right either. It's like I could feel the tip of the needle in my vein, and it was just strange.

It's at this point where any knowledge of fistulas I have runs out. I have to trust these people because they've stuck a lot more fistulas than I have, and I have to assume they know what they're doing or HOLY SHIT.....so I did. And I wish I did't, because my gut was telling me this wasn't right.

I got through the hour of UF and successfully pulled off 2 kg right away, so that was great, but 27 minutes after we started actual dialysis (cleaning), I was lying down (because my bp was low...weird right?) and sleeping (see previous post) when this searing pain started in my fistula. It turns out that, somehow, it infiltrated (needle through fistula) and we had to stop the run entirely for the day. My arm blows up like a tennis ball is tucked under the skin, and it is indescribably painful.

I think the worst thing for me in that moment is how angry I was at myself for not trusting my gut. I'm confident that if I would have asked/demanded that she move the janky needle, then this would not have happened. And they were all so blasé about it (by they I mean the clinic staff). I know that they see this shit all the time, but I haven't. I've infiltrated my fistula one other time, and that was my own fault because I had a cramp in my foot and stood up (stupid, stupid mistake), but I was literally just lying there, perfectly still, sleeping, and it STILL happened!!! What am I supposed to do with that? "Pray" that it doesn't happen again? That's not fucking good enough. I'm pissed. I'm pissed because of how little I know about hemodialysis. Or about accesses. I asked right away for them to start training me on self-cannulating (sticking myself) because I need to suck back some control in this whole never-ending nightmare I find myself in.

And it feels like there is this weird dynamic with clinic staff when you start asking questions. Immediately, there is a sense of defensiveness that I sense. I realized today that the nurse in clinic (there's only one) has no idea how to run the machines. Now maybe that's not her job, but it sure as hell seems like something she should know. I mean, there are only 3 staff members at my particular clinic (it's 10 chairs)...there's the nurse and 2 techs. And when you have a new tech, and a tech at lunch, and a nurse who doesn't know anything technical, well.....it feels scary.

Surely this can't be how it's meant to be. I just wonder how many things will happen that I'll just "have to get used to" or accept without a reason. I'm not good at that, but I think it'll save my life in this case.

This is what it looks like a few hours after I left the clinic. I've been icing it, but I think I need to switch to heat at some point (although I'm to sure when) to help the pooled blood re-absorb. Now, because of this, I have to go to a DIFFERENT clinic tomorrow morning at 7:30am and do dialysis since I didn't really get any today. As a dialysis patient who has to be connected to this machine nearly every other day, any extra sessions feel like they're stealing time away from me. My nephrologist added another blood pressure medication yesterday, but one of the side effects of it is edema (fairly common side effect with BP meds that I've avoided thus far) so now I'm worried that this extra fluid is something I'm going to have to deal with in order to have lower blood pressure.

I'll have spent ever day this week doing something kidney related, and I just want a break where the sun is shining and I have energy and am at a reasonable weight.

Somehow I made it to the finish.

noreply@blogger.com (Storaloppan) — Wed, 03 May 2017 14:51:00 +0000

Man, yesterday is a blur. I was emotionally ragged and threw it out everywhere. Ah, well...what can I say? I mean, it's the truest me there is when that happens.

After countless BP pills, IVs, and anxiety meds, we finally got my BP low enough to start the infusion.

The trick was to stand during every single blood pressure reading. Every 10 minutes. For 3 hours.

And then I'd take breaks in between readings to attend a webinar on infection prevention in dialysis clinics.

Adam saved the day by bringing me a sammich and pasta salad. I didn't bring provisions for an ultimately 11-hr stay, and I was starving by the time things got rolling. So lucky to have such a good friend!

And this guy is continuing to prove that giving away a kidney doesn't negatively impact your life in any way. Adam and Noel are headed to St. George, Utah this weekend for Adam's first Ironman 70.3. He's worked SO hard....so many hours running and in the pool....I can't wait to see how well he does and to hear all about his experience when he and Noel come back. Best of luck to you, Adam!

This infusion was so different than the others I've had at Mayo. For starters, I've never had issues getting them started due to BP. But I DID have a BP issue that caused a reschedule of a biopsy in 2016. That was rearing it's ugly head yesterday and not helping. I'm freaking the freak out about my blood pressure. Also, once the infusion got started and going, the nurse bumped it up to the next flow rate (60ml/hr) and we maintained that the whole time, but my BP didn't rise at all, which is COMPLETELY different than every other one I've had. My BP always rises dramatically when getting these, so what was different the time? What cocktail of meds did the trick? Sadly, we'll never know because we just threw everything at it. There's no learning to be had from yesterday.

I have no idea how long it will take to "kick in". I felt great last night after it was done, but woke up around 3:00am (I'm guessing because my BP was astronomical). I took a benadryl and some 0.2mg clonidine, but never fell back asleep, so I'm am just frazzled and hazy today. I have extra fluid from the infusion on me, and my lungs feel soupy today, so I'm going to go into the clinic early and do a 1-hr UF run before my regular dialysis run. I do this in order to pull extra fluid (hopefully 4 kg off today).

I just hope I can sleep through the entire thing today.

Anxiety will be the death of me.

noreply@blogger.com (Storaloppan) — Tue, 02 May 2017 16:07:00 +0000

I'm lying here right now in room 6B of the specialty infusion center at the U of M, and it's not going well

My first blood pressure reading wasn't awful (at least for me) at 160/110, but every single one after that has been up over 180/110, and there's no way we can even start the infusion until it drops.

I've been given tylenol and benadry for pre-meds (had a nice little nap due to that while waiting), plus I've already taken all of my BP meds for the morning, which include: clonidine, losartan, labetalol, and hydralazine. They even gave me an extra 0.1mg of clonidine hoping that would help, but absolutely nothing is working.

It's 11:00am right now...I've been here since 7:00am. In what seems like a last-ditch effort, we're trying Ativan for anxiety. I've been stepping down my Xanax as I wrote previously, but apparently there might be some rebound effect from that causing my BP to rise. I swear, I can't seem to win. I was trying to do what I think is a responsible thing but I may have screwed this all up!

My bp has been really high since Saturday. I don't know...it's like some switch is turned on inside and it's just amped up. I can feel it in my heart every day.....it pounds with such force.

So, alone with all of the medications, I've made sure I'm not hungry, that my bladder is empty, I've listened to mediation podcasts, and chill music. I even took off my bra because the pressure makes me feel my heartbeat more. In a last ditch effort, I thought I'd write this stuff out and post as a way of releasing any anxiety I have.

I know I'm anxious about the IVIG for many reasons. Firsts of all, I get nervous during these infusions because of how my blood pressure gets. Secondly, I've got a lot of hopes placed on getting this infusion and it making me feel better. Deep in my subconscious, I'm totally fucking it all up somehow and I can't stop it.

And now the anxiety I'm feeling over maybe having to postpone this AGAIN is awful. They're talking about possibly doing this as an inpatient as an option. Even just writing about it I start to get my anxious.

If I was ever worried about dying from kidney disease, it's quickly being eclipsed by dying from anxiety. I swear, you guys, unless you have anxiety, there aren't words to describe how it feels inside and what it does in your head. It messes with you. It makes you feel inadequate. It's stripped me of my self-confidence and left me feeling unsure of my mind and my body.

I should be...

noreply@blogger.com (Storaloppan) — Fri, 28 Apr 2017 01:20:00 +0000

...in a beautiful dress at the NKF Orange Gala taking place right now with my Adam, Noel, Jen & Pepper.

...feeling better.

...able to write anything legible.

...able to plan for something next.

...enjoy a good day when it comes.

...able to tolerate dialysis better.

...myself again.

But none of these are coming to fruition. I'm not able to check a single one off of the list today, or any day recently that I can recall.

I stop blogging because the thoughts in my head get so jumbled up now that it's hard to keep grasp of all of them before they slip from my memory. If I think back to when I started dialysis in January, I'd say that most of the days just kind of blur together...I have this "fog" that seems to have settled in and made itself all comfy in my brain and I just can't shake it.

Some days I wake up and my brain is razor sharp again....I can feel my "edge". I feel witty and wise and hopeful. But then I sleep, and wake the next day to find that the fogginess has returned.

I talked to my friend Amy about it yesterday....she's really the only one that gets anything I'm saying anymore :) I'm worried about the side effects of Xanax, which I take to keep myself somewhat sane. I started taking it when I started PD because it was SO difficult to sleep with all of that fluid initially. I'm taking the XR (extended-release) version and it's not supposed to be as "addictive" but I'm not so sure. I honestly haven't tried sleeping without it recently...it's just become another pill. But I'm experiencing significant memory gaps that I can't quite explain, and it's honestly frightening. The great thing about Xanax is that, in regards to dialysis, it alleviates a lot of the symptoms I have after treatment (i.e. complete attack on my central nervous system). They'll go away eventually, but I swear I don't think I'd ever fall asleep waiting for the symptoms to fade, so I take the Xanax. I've started to do a little research, but I think this is certainly something I need to address. I'm going to take up my friend's advice and try to work on getting to the point of taking Xanax on dialysis days, but it's going to take some time.

Anxiety is like this velcro creature that seems to be wrapped around my chest. The battle in my brain feels like the biggest fight I'm in. I spend SOOOO much time in my own thoughts...feeling every little weird sensation that happens in my body, and then I run wild with all of the worst thoughts. It's impossible not to. This sucks every single day. I hate it. And I'm scared that this is all there is now. I'm REALLY scared of that.

There's always been something in the future to look to (even though it wasn't always good). But there's always been SOMETHING. Now there just isn't. Every day is just swimming into the next. It's the end of April now.....summer will be here soon, and then all of a sudden it was last Christmas. I mean, seriously...that's how it feels. I'm here for everything but missing out on it all. I just can't seem to re-engage. I can't envision what the future holds. People talk about living in the moment more, and I gotta say I'm not all that much a fan. I want a future to imagine.....I want to think about a dream vacation that doesn't involve the nightmare that is dialysis.

Dialysis is working according to my labs. My clearance is good, my electrolytes are within range, my hemoglobin is going up and so is my albumin, but I feel worse now than I did on plasmapheresis. I had pneumonia in February that landed me in the hospital, and I have it again now. I caught it early this time, going to Urgent Care the moment I noticed the grumblings in my chest. Pneumonia is a big damn deal, and it's really difficult to function. I feel fortunate that I stayed out of the hospital this time as they gave me stronger antibiotics in Urgent Care, but I've gone through 2 rounds now and I'm no better, nor will I be until I get an IVIG infusion.

I had one scheduled 2 weeks ago, so I drove downtown to the U for my 3:00pm appointment. When my doctor's assistant scheduled the time, I messaged her and expressed concern that they couldn't start it earlier as I told her this was usually a 5-6 hour infusion for me. She negated my concerns and told me that the infusion center told her it would take 2-3 hours. But I went anyway...once there I told the nurse how my previous infusions of IVIG went at Mayo (usually takes 5-6 hours because of uncontrolled blood pressure) and we both agreed to postpone it, so now it's set for next Tuesday. Until then, I'm just trying not to get any worse.

I bought tickets to Wicked for Izzy and I this Sunday. Fingers crossed that I'm going to be able to keep up my end of the deal on that one and actually take her.

I'm putting a lot of hopes on this IVIG infusion....that it's going to be the mystery cure for the weird yet all-consuming things that plague me. I have severe issues with my sinuses that aren't seasonal anymore and I've got everything crossed that an immune-system boost will alleviate a lot of it. I have a sleep study scheduled for next Wednesday that I will probably have to cancel because I can't sleep lying down right now (which kind of makes that time spent studying my crappy sleep useless). This sucks in SO many ways because they are renovating the sleep center right now, and they're only down to 4 beds. I've been waiting 2 months to get in to this appointment because apparently my snoring is hideous (enough to make Joacim willingly sleep on essentially a glorified futon for 3 weeks in March), and it's certainly not better with pneumonia/sinus-y issues. Fuck, I'm an awful mess right now. And in the back of my head I'm wondering what to do next if the IVIG doesn't work.

And a crappy week wouldn't be complete without another trip to the ER and a stay in the hospital for a few days

noreply@blogger.com (Storaloppan) — Tue, 14 Feb 2017 04:06:00 +0000

I need to update about what's been happening the last week or so. The last post I made had me in the ER on a Sunday night due to problems breathing. I was discharged to go home that same night, had a crappy night of sleep and then dialysis that Monday morning (which would've been Feb 6th). That dialysis session was also quite rough, and I had one of the worst migraines I've ever had after that. I came home, went straight upstairs to my bed with my clothes on and laid there all night. There was just no relief. I took the Imitrex the last half-hour of treatment, and I took it again at 7:00pm, but by 9:00pm it was STILL throbbing and I was out of options, so I just sat there in my room, as dark as I could get it. I couldn't lie down because my lungs were so full of fluid that I'd just cough, which exacerbated the migraine. I can't remember being more miserable than I was that evening. I could LITERALLY hear the ceiling fan cutting through the wind and it was killing me. Times like that make it hard to see any good in anything. I got frustrated with Joacim because all I wanted/needed at that moment was for someone to take are of me...to know what my migraine medicine was and where it is without me having to provide every single detail. I just wanted a nurturing, caring home nurse who would attend to my every need. Joacim sometimes has a hard time with this because he doesn't know what to do, and he thinks that leaving me alone is the best thing. Sometimes he's right, but sometimes it feels uncaring. He can't read my mind, and when a headache is that bad I can barely talk, so I take what I can get.

That next morning I woke up and walked around the house and saw the sad, sorry state of affairs. When I have a migraine, time moves so fucking slow. Like I'm just trying to figure out how to get through each block of 5 minutes until I hopefully become so tired that I just pass out. But then I wake up (usually headache free) and it feels like I've been out for days. Maybe my head is finally clear enough that I can see how far things have deteriorated.

This picture is of our spare bedroom, where Joacim took up residence about 3 weeks ago. Doesn't look comfy, does it? But apparently it's a whole lot better than trying to sleep next to me, and I can't say I blame him. I sleep upright now and have been for the past few weeks because of the coughing, and most nights I only get 5-6 hours of sleep. Even when I do sleep, I apparently snore now, and it's loud. I'm embarrassed, but I believe it because I've woken myself up a few times doing it.

This is where I sleep. Notice the large volume of pillows (I think there are 5 of them there) needed to help get me through the night. The lack of sleep is not helping me heal in any way, shape or form.

Because of the snoring and the constant sinus issues I've been having, I made an appointment to see an ENT and it was on Tuesday. I'm greeted by this form, which I've mentioned before is just awful. Luckily there were a lot of check boxes that didn't require actual writing, because it's worse than ever now.

Along with the chronic sinus infection and bloody noses (in part due to Minnesota winters) and snoring, I've been having issues with the fluid in my ears. It feels as though my Eustachian tubes will never fully drain, and it leaves me feeling like I'm walking around with a plastic bottle on my head, only on one side. I also started to have this horrible high-pitched ringing in my ears. I've done everything I can think of (the scuba-divers method and everything) but nothing works, and I think this is contributing to the migraines. The ENT wasn't the best (smarmy little man who I felt wasn't taking my concerns seriously enough) but they did the full exam. I have some hearing loss in my left ear that I'm confident occurred during the X-Ambassadors concert during the Basilica Block party last summer. My friend Steph and I went, and we had VIP passes (awesome) that stuck us right in front of the enormous speaker and I didn't have my earplugs with me. BIG, HORRIBLE MISTAKE. Anyway, this doctor didn't seem to think that there was much that was wrong. He did a culture of my sinus mucus (which included numbing of my nose and throat and a very long metal probe in my nose, and a visual examination of my eardrums to see if there was fluid collecting behind them, but he didn't see anything. I was desperate for relief and he suggested that we could try a myringotomy, which is a small cut in the eardrum, like what toddlers get when they're getting tubes put in their ear. He did the myringotomy, and I'm pretty sure that was the dumbest idea I'd ever had. There doesn't feel like there's any pressure anymore, but I also feel like I'm completely lopsided because I can't really hear anything out of my left ear, and whatever I CAN hear just sounds echoey. It's just awful. And there's still ringing. Fuck, dumb idea. He said it should take a few weeks to heal and gave me a prednisone taper to take.

The scariest thing about that entire trip was the enormous difficulty I had walking from my car to the parking lot. My shortness of breath was terrifying, and I had to stop 2 times on the way to the office (it's not a very far walk). I went straight home after that and headed upstairs, having to stop on the half-landing to catch my breath. I made it to a chair upstairs and pretty much stayed there the rest of the night. I'll admit I was terrified. I had been to the ER for pneumonia and they weren't really confident, and I was afraid that they weren't going to take me seriously since I had just been there, but they DID say to come back if it wasn't getting better, so I did. I had Joacim take me this time because I honestly didn't think I could drive myself. It was later at night (my usual time to decide to go to the ER) so I had Izzy and him wait in the car until I was in back and sent them home so they could get some sleep). My pulse O2 was below 90 when I arrived and my BP was 190/117, so clearly it was a good idea I came. The doctor I saw this time was much more urgent with her action and decided relatively quickly to admit me to the hospital. I was honestly so relieved I just wanted to cry. I wasn't feeling any better, but I felt I was going to be in good hands, except for this IV which hurt like hell. Nurses always go for that vein because it's so big and juicy (as you can tell by the blood splatter which is in part due to my high blood pressure), but there's so much scar tissue there from all of the plasmapheresis that it hurts like crazy.

My friend, Jessica, saw my post on Facebook and came to the ER to bring me a few things (including snacks because I was starving), and I can't thank her enough. It was just nice to have someone there to talk to and distract me. About an hour after I arrived I took an ambulance ride to Methodist hospital (which is about 20 minutes away). They were quick to put a pink bracelet on my fistula arm so that no one would try to draw blood or take a blood pressure in that arm.

And I was thrilled that they moved the IV into my wrist (well, as thrilled as one can be with the thought of another poke).

And then respiratory therapy started to come in for albuterol breathing treatments. They also gave me this spirometer to use 10 times an hour to help work on the deep chest congestion. At this point it was confirmed that I definitely had pneumonia, so they started a course of daily IV antibiotics and 40mg Solu-Medrol (steroid) every 8 hours.

I got very little sleep that evening because they started the IV antibiotics at 3am, plus all of the vitals checks and whatnot. I had to do inpatient dialysis on Wednesday, and it was the worst. There were 4 of us in a really cramped room, I had had enough of lying in bed, and I got literally THE WORST MIGRAINE IN THE HISTORY OF MIGRAINES. The worst part about this is that the doctor on call wasn't comfortable giving me Imitrex because apparently it's contra-indicated in people with high blood pressure. Triptans (most migraine meds) have a tendency to cause high blood pressure, so it's not a great idea to give it to someone already suffering from it. This was totally news to me because I've been using Imitrex for the last year whenever I have a migraine, and especially the first 5 dialysis treatments. That information pretty much scared me straight and I won't be using Imitrex for a high-blood pressure migraine anymore. That being said, I spent that entire night in bed writhing in pain. I mean, this migraine just would not lessen. All of the muscles in my neck and upper back seized up and I wanted to lie down, but I couldn't because then my lungs would fill up with fluid and I'd start wheezing and coughing. I must've slept a little but when I woke up the next morning I STILL had a headache. The doctor gave me an oxycodone to help with the pain (thankfully) and that did take the edge off of the pain. Eventually my BP dropped enough that he was comfortable with the Imitrex, which was administered subcutaneously in my stomach. That was a mistake, because my BP shot up sky high after that and I spent the rest of the day trying to walk it off on the 4th floor of the hospital. Luckily my headache was gone...I'd take high blood pressure over a headache any day.

I fought hard to go home that day, but after my BP rose I knew it was pointless to try to argue, so I had to stay one more day for another round of antibiotics and Solu-Medrol. The doctor wanted to make sure that we kick this pneumonia squarely in the teeth before I was discharged. Luckily, Izzy and Joacim were able to visit me that night and bring me some stuff from home, including a soft nightgown (hospital bedding and dressings are notoriously bleached and crunchy and irritating).

And my dear sweet daughter tucked in a few caramel candies that I love in my request for chocolate chip cookies. This kid knows me well :)

I took a picture of this bruise at some point because I've had it since January 5th. These things just don't go away with any expediency.

I was able to check out Friday morning and my friend Ellen came and picked me up because Joacim was at work. It was important for me to be able to dialyze in my regular clinic on Friday, and I had just enough time to get home and soak in the tub before dialysis that night. Check out this ghastly pale skin....hard to tell where my legs end and the tub begins :(

So last Friday's dialysis went remarkably well....dare I say "good". I kept my legs down the entire run because putting myself in a reclining position (which is pretty typical for dialysis patients) makes my BP rise, so by dangling my legs it stays lower. The awful side effect of this is enormously swollen ankles. After dialysis, Joacim and Izzy picked me up and I felt so good that we decided to go get sushi. There's a great little restaurant in town that we've missed dearly, and I said screw it, I'm hungry. I didn't eat any raw fish (only rolls and rice) but it was delicious and awesome and felt normal.

I woke up Saturday and felt pretty awful. This wasn't kidney related, but it was related to the fluid in my ears still. I was pretty useless when it came to doing anything around the house other than breaking things. Joacim was trying to remove a clog in the dryer venting and that took awhile (unplanned), and then I went and broke the garbage disposal by allowing the tiniest glass bowl to slip through and it shattered. So, my dear, handy husband had to take everything apart, remove the garbage disposal and clean it out (along with the pipes) and put it back together. I tell you, at that point, we were all feeling pretty low.

The one bright spot to the weekend was a special delivery from a friend I met on Instagram. Social media is sometimes awful, but it has bright spots for people like me. She sent me this colorful little care package to lift my spirits and it did the trick! A nice cup of chai that evening, spent reading a book with Izzy, was the perfect end to a crappy day.

And then on Sunday we had a little bit of normal. I don't remember much of the day, but near the end we all sat down and helped Izzy study for her math test that next morning. I'm glad I was healthy enough at that point to help out, and to just appreciate the moment.

Still sucking in every way imaginable

noreply@blogger.com (Storaloppan) — Tue, 07 Feb 2017 16:57:00 +0000

So when I posted last Friday, I was in a dire place where I didn't know what I should do. Sadly, I'm still at that place but for different reasons.

I woke up Friday morning still feeling like I was drowning in my lungs and started calling the clinic and my doctor's office. I found myself in the vicious cycle of waiting on hold, leaving voicemails in general mailboxes and speaking with the nurse at my clinic who has a way of talking that leaves me frustrated. My observation is that she's noncommittal in her answers. What I mean by that is when telling her my symptoms and my frustrations with not knowing what to do, she'll say "well, you should probably go to the ER". What in the hell does "probably" mean???? I think I asked her that but in a nicer way. I missed my team at Mayo right then more than I ever have. Mayo understands patient-centered care. If I were at Mayo with these symptoms, my doctors would be actively working to create an action plan to attempt to address these immediately. Now that I'm outside of that, I have to do all of the work and nothing feels immediate.

But my prodding and freaking out worked this time because my new nephrologist and clinic came up with a plan. I went into dialysis an hour earlier on Friday, and for the first hour we just did ultrafiltration (which means I'm connected to the dialysis machine and it's only pulling fluid out of blood instead of pulling fluid AND cleaning it). Doing this, they can remove up to 2 L/hr which is awesome. After the ultrafiltration I'd do my regular run, where they'd pull another 2 L overall, and the combination worked. The ultrafiltration part was much nicer than dialysis, and the only thing I noticed was that I started to get really really cold...small price to pay to be able to breathe again. I felt a noticeable difference after Friday's run, but sitting in that damn chair for 4 hours nearly drove me batty. This is a picture of the machine near the end of the run...at that time they had pulled 3845ml!

Even though I was nearly 4kg lighter (8.5 pounds) my legs and ankles were incredibly swollen. The 2nd half of the run I sat with my legs down (instead of lying back on an incline) because it kept my blood pressures lower, but that meant that gravity became my enemy again and dumped all of the fluid in my ankles.

That night (Friday night) I'm particularly grateful that Izzy was still staying at a friend's house because I think I threw up 5-6 times. And it really freaks her out when I vomit (who can blame her). No idea why....it started about 2 hours after my run, and just continued intermittently for a few hours. I remember sitting on the toilet, pooping and vomiting at the same time, with snot running down my face from the puking thinking "yes, this is the very definition of hell". It's like my entire body was rejecting everything inside of it, all at the same time, which is why a bucket is now a regular feature in our bathroom. I'm not sorry for talking about the graphic details, because it's the truth of what's happening, and I write this to capture all of the gritty details.

So after spending the evening vomiting and somehow drifting off to sleep, we had to get up at 5:30am the next day to drive to another center in Bloomington for a 2-hr ultrafiltration run to remove the rest of the fluid. It was a nice clinic with upbeat staff. And I have a feeling I'm going to make a lot of friends as my time on dialysis progresses, as most of the people in there are almost twice as old as I am, and they're pretty sweet. This is a pic I took before, and you can still see all of the swelling around my eyes.

We were able to pull off another couple of liters of fluid at the end of that, so from the time of my initial weigh-in on Friday afternoon to my weight after Saturday's run, I was 13 lbs lighter. A HUGE difference. I felt human again....lighter....no headache. Just an incredible difference.

Sadly, the giddy joy I was feeling didn't last long, because in addition to starting dialysis I've been fighting a sinus/upper respiratory infection all at the same time. Fuck, I don't know what issue is caused by what problem anymore, but I was still having trouble breathing. I sucked it up through Saturday, but by Sunday I really couldn't walk up and down the stairs. I waited and waited for relief...took a bath...sat in a dark room and watched Netflix...anything to try to keep my anxiety from making it worse. By late afternoon I started to get really worried. I have been feeling lately like I'm breathing through a straw...you heard it on the video from my last post. By Sunday, that straw had become a coffee stirrer, and I swore that something really bad was going to happen to me if I didn't go to the ER. Again, I've covered how terrifying that could be, but this time I just didn't care. I needed relief, and I was so afraid that I was overthinking it or being silly that I just drove myself there.

Now you may be wondering why I would drive myself to the ER. Joacim and Izzy were both at home, and I could've wrangled them up to take me, but most people don't understand why I do it. I just hate the fear that I could be causing in Izzy every time she has to see me in some medical distress in a medical setting, and I can't stand having people sit and watch me as I'm suffering. Honestly....it doesn't do me good in that setting to have people around. I can't really talk much as I'm having a hard enough time breathing....they're kind of anxiously looking around wondering what's happening and I know it's going to be a couple of hours before anything happens, and I just hate that scenario. So I drove myself while they stayed home and had the most normal evening they could while I dealt with my shit.

So I went to the ER (one that I've been to before but not recently) and they were very nice and kind. I felt better going there because I knew that this wasn't fluid-overload related (meaning I felt my issues could be separated from my kidneys, which made me feel safer). They took me back right away because my BP was so high (170/110), did a chest x-ray and labs and I waited. I waited for quite awhile, actually, which was frustrating because my BP was rising and my breathing became more labored. Finally, after 2 hours of lying in that bed watching the Super Bowl, they came back and told me that they *might* have found the beginnings of pneumonia in one of my lower lobes (guess it's harder to tell on people on dialysis???) and were going to treat me right there with an IV antibiotic and change the one I was on at home to a stronger one.

They gave me a breathing treatment too to try to alleviate the issues I was having. Sadly, that didn't do much. I panicked a bit because I didn't want to be released from there feeling as bad as I was. I couldn't imagine trying to go home and sleep one more night in that condition, but that's exactly what I had to do. I felt that the ER did a great job of addressing all of my concerns, but there are so many factors for me now that nothing is a quick fix. Maybe I just needed someone to tell me I wasn't going to die in my sleep that night...because I swear that's what I'm fearing right now. I fear that sometimes I'm "too" strong and push my body too much, because I just don't know where the bottom of this whole thing is.

I saw this following pic in my FB feed while I was at the ER on Sunday night and I literally laughed out loud at the absurdity that is my life. Do you know how many times someone asks me how I'm doing a day? It feels like hundreds. When I'm on 5-minute BP checks during dialysis, she asks me how I'm feeling every 5 minutes, and there are only so many ways to say "horrible".

Guess what? Even people like me are susceptible to cracks in the medical system.

noreply@blogger.com (Storaloppan) — Fri, 03 Feb 2017 12:30:00 +0000

After 11 years of dealing with this disease in one form or another, I feel the I'm fairly proficient at knowing exactly who to call when, yet there are times, like tonight, that I was at a complete loss.

Just a recap: dialysis sessions #3 (which was on Monday) and #4 (Wednesday) were awful but in different ways. On Monday (#3) I got a migraine 1 hour into the session that couldn't be relieved. The tricky thing with dialysis is taking certain medications while you're actually getting a treatment. Sometimes this will be ok, but for some meds, it doesn't really work because the dialysis machine cleans them out of your blood. So when I get a migraine or my BP goes high, I have to wait until it's already full-on and 1/2 hour before the end of my procedure to take the meds, and those meds take 2 hours to really kick in, so it's a shitshow. Thankfully, this time, I did NOT vomit on my ride home with a different friend (win!). But I felt like my lungs were so full of fluid that I just couldn't sleep from all of the coughing. On Tuesday I woke up feeling not right and was coughing quite a bit. I went in and sat on our recliner and started coughing so hard that I actually starting vomiting mucus (which is just gross). Well, that kinda freaked me out. I mean, a lot of bad things happen to me, but that never had, so I freaked out a little and worried that I was getting pneumonia. My weight had been on the rise because the 1st two dialysis sessions we didn't remove any fluid, and we only pulled 1.7L on Monday, so I was still on the heavy side by Tuesday. After the vomiting, I decided to head back to Urgent Care to see if there was pneumonia or bronchitis developing. Another low point happened when I got to Urgent Care because it was time to take my meds, and one of those meds that I've mentioned before caused me to vomit in the patient room. But I seriously vomited for about 10 minutes, peed all through my pants and just sat there crying. The doctor was kind enough to give me a pair of scrubs and the nurse gave me a bag to put all of my peed-on clothes in and give me time to get myself together. I'm really worried about how labored and shallow my breathing had become, especially upon lying down, so she did a chest x-ray but it was clean. She gave me a cough medicine with codeine in it to help me sleep, which it did last night, but I woke up this morning with a slight tinge of a headache still. I can handle a lot of things, as described in this blog, but headaches are not one of them. I just want the world to go dark, silent and on pause when I get them.

I had an appointment scheduled at Mayo today for a 4-week follow-up for my fistula. I guess we're just calling it a new fistula right now as opposed to a revision, but whatever. I was so happy/surprised when Joacim said he'd drive me this morning, as it came out of the blue. He didn't think I could really do it, but even though my stubborn self said I could, I was SO glad and comforted that he was there with me. I had a REALLY difficult time walking around the campus with my breathing incredibly labored. The ultrasound took longer (as always) and I had comments such as "wow, I've never seen that many scars before".....good thing I'm not sensitive about the way it looks at this point.

After the radiologist reviewed the films, we left and picked up some extra migraine and nausea meds at the pharmacy because trying to move things like that to a new doc is a lot of administrative energy that I haven't had since starting dialysis. Then we met with one of the access nurse coordinators to review the results of the ultrasound and come up with next steps. The dialysis access nurse coordinators are in the outpatient dialysis unit of Mayo, which is not run by a DaVita or Fresenius (major important difference!!!!). But it still saddens me every time I'm sitting there waiting for an appointment. As I watch these (mostly elderly) people being wheeled in and out, I just sit there and think about the shitty fate I have.

Yeah, I took the pictures in B&W, but they aren't any better in color. It's sobering, and I encourage anyone, ANYONE that knows someone who is on dialysis to go sit with them, and watch what it entails. See if you don't feel like you're going crazy after 3 1/2 hours of not being able to move. Or just sit with them and keep them company. I didn't think I'd like that, but I had a friend who did and it was the most enjoyable time I've ever spent on that hemo machine.

Anyway, appointment with the access nurse. The good news is that the fistula is growing nicely, and the average flow rate overall is 1.297L, which is great! The minimum is 800ml/min, so it's ready flow-wise. There is one spot where the diameter of the fistula is smaller than necessary, so I've got to do some hand exercises that I've been neglecting in order to hopefully grow that section and make the entire vein wall stronger.

I'll admit it that I'm TERRIFIED of getting stuck the first time at a dialysis clinic by people who don't know me who don't have vials of lidocaine laying around. TERRIFIED. So I was a bit relieved when she thought we could wait another month. Granted, it's another month with this crappy chest catheter that has gotten even crappier since being transitioned to DaVita. Make no mistakes, DaVita is a FOR-PROFIT business, and they aren't interested in going the extra step for patient safety unless Medicare says they'll pay for it, and Medicaid doesn't seem to be all that interested either in some of, what I could consider solid safety practices (it's all about the dollars...not about my living or dying). One of the things that's MOST perplexing is this chest catheter. I posted a pic a couple of posts ago about what it looks like after a dressing change at Mayo:

See how nice that was with a great little biofilm around the catheter exit site and a tegaderm-like plastic secure bandage around it that's good for 7 days????? The changes of infection in a chest catheter are high, but Mayo did a phenomenal job of minimizing that. You know what my dressing looks like after one change at DaVita?

What purpose the gauze tapped round the lumens (that's the things hanging down) serves is unknown to me other than to add weight. The shoddy piece of gauze with paper tape around isn't even secured properly. Add to this that they'll take this off to change it every Monday, Wednesday and Friday, thus increasing my risk of infection by 3-fold every week. Now, I could go in and request that I do my own dressing changes and purchase my own supplies and that might be fine. But some clinics do not appreciate that, and I haven't figured out if this is one of them. I've learned that it's important to build the relationships in order to get the best health care, rather than bullying them through like I used to do. I can ensure my catheter stays as clean as possible in the meantime (but dayum what I wouldn't give for a shower), but I need to figure out if it's worth it too. If we start using this fistula in a month, it may not be worth it, but we'll see.

This was not the worst part of the day, though. I've been steadily retaining more and more fluid since stopping plasmapheresis last Monday. Each day it's a little more than a kilo, which adds up quickly over time. I know that this is going to happen because I'm not getting that beautiful albumin anymore which has been helping keep my edema in check. But it seems that my kidney has nearly completely stopped producing urine too, which is unexpected. The first two dialysis sessions we didn't pull fluid, but we started to on Monday. It's a slow process for fluid removal because it's harder on the body, and I'm already having my own share of difficulties right now. I met with my new doctor on Wednesday, and she's great. We've got a solid game plan where she'd start looking at alternatives to blood pressure meds (particularly the one that makes me vomit relatively frequently) and increase my Lasix and one other BP med. So today, when I woke up and weighed myself I was at 66.3kg. Not awesome, but not the worst I've ever been either. Joacim and I went to Mayo, and I didn't really eat or drink much during the day, but I could feel the swelling in my abdomen, knees and lower legs/ankles. When I got home I weighed myself (which was around 3:30pm) and I was already up at 68.3, which was a whole 2 kg gain in less than 12 hours!!! I started freaking out, panicking. I know I have dialysis tomorrow, but there's no way we can pull off enough fluid tomorrow to account for 2 days of no dialysis on Saturday and Sunday, and 68.3 is eclipsing the heaviest I've ever been since kidney problems began. In my brain, I'm thinking that I need to be checked into a hospital for a few days to do dialysis to get more fluid off, but how do I go about it? I tried to get a hold of my new nephrologist, left a message with her on MyChart, called my nephrologist at Mayo, ended up at the nephrology center at the U of M and then called Fairview Southdale to be referred to the nephrology on call (which they didn't have). All of this effort was in order to try to stay inside the medical system that my new nephrologist is in, which is not one that I've been in before but this was all happening after 5:00pm. So then we (Joacim and I) were faced with making some decisions and here's what comes into play for someone like me:

Option A. I could go to the ER of the hospital affiliated with my new neph. I spoke to the nephrologist on call there and he said it was unlikely that I would be dialyzed tonight unless I was having trouble breathing (which I was) but he sort of sounded like it probably wouldn't happen. I told him that this wasn't my first time on dialysis (even though I had started again recently) and that this felt different, that I was having trouble breathing and lying down was impossible. He was kind and said that I could come to the ER at the U, or I could go to Fairview Southdale (which is closer to me and a nice hospital) ER. He suggested I call the hospital there and ask to speak to the nephrologist on call, and the operator said that they didn't have one. Um. Then I asked if they have inpatient dialysis there and she said no. So I knew that wasn't going to work...I didn't want to be sent to an ER because it was close only to have to be moved by ambulance to a different hospital....I'd rather go to my final destination. The doc at the U that I spoke with gave me his pager number but I didn't call back. It felt a little hopeless. I didn't want to drag my family downtown to an ER we had never been to in the hopes that someone would hear my plea and not make me feel like this fluid thing was all in my head (because that happens).
Option B. I could go to the hospital ER where I went when I had internal bleeding from a biopsy back last Easter. They are part of a different network than my new nephrologist and she doesn't have privileges there which is the biggest downside. But they treated me well when I went to the ER and got me the care I need quickly and effectively. And even though they didn't have the most updated records, I felt like I could communicate the last 3 weeks fairly effectively. But then my new nephrologist was out of the loop, and maybe they'd start pushing drugs for high potassium (which we're trying to rectify via dialysis, and having it done "the hard way" in an ER setting is not pleasant).

In either scenario, I won't going to get there until around 8pm anyway, and by the time I got back for someone to see me, even if they DID decide to start dialysis, it wouldn't be until around midnight. So I thought rationally for a bit (with the help of some of my FB friends who were out to dinner kindly giving me medical advice :) and decided to just wait it out. I felt like I was going to suffocate, but I wasn't LITERALLY going to suffocate. The panic becomes very real and palpable.

We were worried about Izzy either way. She has a math test tomorrow that I didn't want my problems to affect so another friend of ours (the newish one that had to hear me vomit) is watching Izzy tonight with her own kids and will get her on the bus tomorrow. That way, if I do have a freak-out panic moment tonight, it's only Joacim and I that will have to pull it together and Izzy won't miss school. I took the rest of my scheduled BP meds before Joacim drove her over to their house, and measured my BP when he returned. It's still not ideal, but much better than it was getting so I feel comfortable in the decisions so far. It's very difficult to breathe and isn't getting better which is one of the most troubling things:

I just want you all to hear what it's like, having kidney disease and renal failure and dialysis and a husband who works a lot with a job that's changing requirements and odd hours and an beautiful 8-year old who we're trying to raise as normally as possible in the most non-normal environment. Oh, and to cap things off, our dog Murphy made a huge pile of vomit as Joacim walked out the door. Just awesome tonight.

It's rather late and I'm going to try to sleep. My plan is to call the clinic first thing in the morning to see if they can get me in. Then I'll be able to speak with my doctor and maybe come up with a different plan over the weekend to remove this fluid quicker. I didn't expect this to be such an issue so soon, but I also didn't expect this kidney to stop working nearly entirely. Maybe tomorrow will be different. I can only hope it is but prepare that it won't.

What I DO know is that we, the Trunk family, need more people in our village. Many people have offered to help whatever we need, but that's vague and difficult to figure out. We're working on things we need that will really help us day-to-day, but in the meantime rides to and from dialysis are appreciated, as well as anything that gets Izzy out of the house for some fun sometimes.

Thanks to all of you for listening and commenting. It keeps the ghosts away.

Hemodialysis....it's just as bad, if not a little worse, than I remember..

noreply@blogger.com (Storaloppan) — Sun, 29 Jan 2017 16:13:00 +0000

It's Sunday morning as I write this. I'm sitting here at the kitchen table where it's quiet. Joacim is still sleeping and Izzy is still at a sleepover, which is all great because I feel just crappy.

One week without plasmapheresis is making a big difference, even though I've had 2 dialysis sessions so far. Now that I'm not getting the regular infusions of albumin that I was getting with plasmapheresis, I'm starting to retain fluid ... quickly. I've gained 5 kilos since last Wednesday, and today I feel like I'm drowning again.

I'm familiar with this feeling, and the associated panic that starts to set in my brain. It becomes this weird shitty game where I lose every time. I've stopped drinking the 3L of water a day I was drinking while on PP because I knew that we were't going to pull any extra fluid off during the first 3 dialysis sessions, so pretty much most of what comes in my body stays in my body. I even gain a little during dialysis right now due to saline, so that's also adding to it.

I'm vacillating between anxious and nauseous and full-on panic, and it sucks. I'm hungry, but waves of nausea make me cautious. I need to take my morning meds but I'm trying to get some food down so that my blood pressure medicine doesn't make me vomit. I have a chronic sinus infection that has, once again, moved into my chest for a full on crackly chest cold. This isn't living. But it feels as if this is going to be my normal, and I'm having a hard time accepting that.

I reached a new low on Friday after dialysis. I had a newish friend drop me off and pick me up as I can't really drive home after the session is over (yet). I did a 2.5 hour run at 250ml/min (so a bump of 30 minutes and 50ml/min from the 1st session) The first hour is usually okay, but my blood pressure starts to rise at the 2nd hour, and continues to go up and up and up. When I got off the machine it was 190/120. I don't know if anyone's ever experienced that, but it feels awful. I was dizzy, sluggish, had a migraine, and felt like my head was just full of fluid. I had been taking my BP meds at 9am, 3pm and 9pm, but since BP meds dialyze off, I've been instructed by the clinic to not take the 3pm meds because they don't want my pressure to drop too much (which won't happen but that isn't something I wanted to fight on Friday), but to take them after the run. Sounds great, until I actually have to do it.

So I did this on Friday ... no BP meds before the run ... get off the machine at 190/120 and then take the meds. I didn't want to take them right there at the clinic because my stomach was empty and I wasn't feeling well and I knew there was a chance that I'd throw up from them, but I took them anyway because I didn't want to be labeled non-compliant right away.

My poor friend ... I'm not sure if she knew what she signed up for when she offered to pick me up. She walked in right as I was getting my stuff together, and I was having a panic/crying attack because it just felt so awful, and I imagine it's really hard to see someone you like going through what I'm going through....like actually WITNESSING the panic. It's uncomfortable and weird and a very strange way to get to know someone.

I was getting hot flashes so it felt good to walk outside. She helped me in the car with all of my stuff and we headed home. I don't feel much like talking after dialysis, and it was a pretty quiet ride but I could feel the hot flashes getting worse. And then I could tell that I was going to throw up. It's literally 8.3 miles to my house from the clinic, but it felt like a lot longer due to hitting every red light on the way. She rolled down the window for me because I needed a blast of cold air to try to slow everything down, but it didn't work. In the end, I had her pull over on a busy highway with no shoulder (only a guardrail) so I could vomit. It was in my hair and on my coat, and my body worked SO hard to get that pill out of it that it was the literally definition of gut-wrenching. And embarrassing. I mean imagine...it's 6:30pm on a Friday night, lots of people are driving, and I'm standing on the side of a highway with a newish friend throwing up outside of her car. I had to drive by the scene of the crime yesterday and take a picture.

I was so embarrassed yet I knew that there was absolutely nothing that I could've done to stop it. She was so kind though....she got me home and into my house and stayed with me until Joacim and Izzy made it back home. I felt better after vomiting but the migraine was getting stronger so once my friend left, I headed up to my bedroom, took some migraine meds and laid down. I kept one small light on but no sound, and laid there for 2 hours waiting for it to subside.

Slowly, it went away. I started to get hungry so Joacim (sweet man that he is) brought me something to eat (fried chicken, mashed potatoes and gravy from Lund's ... my favorite) and I was able to keep it all down.

I was so scared that the migraine was going to come back that I just stayed in bed the rest of the evening and because more horrified and anxious as I watched the news, so I switched to catch up on some DVR recordings.

I think I ended up being in bed for 14 hours overall, and woke up Saturday morning to this face

Great. We're back to puffy face. When my eyes swell like this, all of the fluid in my eyelids leaks out all day, so it's a day where my eyes are CONSTANTLY watering with a thicker than normal eye mucous. So fucking annoying. My sinus infection isn't helping at all.

I have multiple things to tackle when it comes to making this better:

fluid balance - this will take time, and this is the one I'm LEAST patient on because it feels icky inside my body. Once we start pulling extra fluid off, I'll have a better idea of how this will go. I still take a diuretic but it's a pretty low dose. On the flip side, pulling off fluid is usually a much harder run, physically, and I'm pretty sure I'll vomit.
blood pressure - we were limited with BP meds prior to dialysis due to potassium issues, but that may not be as much of a problem now so hopefully we can play around with them to get my BP lower overall and hopefully change out the one that frequently makes me vomit (labetalol).
chronic sinusitis - I think I need to go see an ENT for this one as I've had this since the beginning of November. I'm now also having trouble with my Eustachian tubes, so my balance is a bit off and my ears are plugged 70% of the time.

I'm told that my new nephrologist will be at the clinic tomorrow during my run, so we'll have lots of things to cover. I'm going to feel even more awful tomorrow because I'll add another 1-2 kilos on today probably.

I know that, eventually, I'll get this all sorted out, but it's so fucking hard to wake up in my body every day.