The Jelly Bean Exchange

What I'm Doing to Help Myself

2018-11-28T11:07:00.000-05:00

If you have been following along on my social media accounts, you will know that on November 5th I received my third kidney transplant. It's been such a crazy process and its been easier to send quick updates on instagram, twitter and facebook vs. writing a blog post.

It's been a tough process. First, my kidney was a little sleepy, which lead to a longer hospital stay. This surgery was significantly more challenging for the surgeon to find a spot for this kidney. They ended up slicing me right down the middle, moving my bowel over to slide the kidney in. They didn't have a lot to attach the kidney to so they actually took fat from my donor to essentially glue my kidney in place. This means I will have a longer recovery period because my kidney isn't exactly stabilized. So, here I am unable to drive, lift anything more than 10lbs, walk around the block by myself or really do anything adults need to do to function. It's been frustrating. As my clients know, I have very little sympathy for people who complain but are unwilling to do anything to help themselves. So, here is my list of things that I am doing to help myself through this process (they are not listed in any particular order, I believe they are all important).

1) Rest
Ok, so maybe this is the most important. As I start to feel better, laying around all day is getting more and more challenging. I am so jacked up on prednisone (a crazy steroid that is currently helping to keep me alive) that I can't really concentrate on anything for too long. I am finding a book really hard to get into because I can really only make it through 1-2 pages at a time. I have watched an EMBARRASSING number of Survivor reruns. I am trying to pick 1-2 small tasks that I can do each day to try and break it up.

2) Talk About It
Having this blog and the social media that goes along with it has been a HUGE support system and outlet for me. I wanted to share my experience so people could see how crazy this whole process is and the fact that it doesn't end once you get the kidney! I've received amazing support from other kidney patients, friends, family and strangers. Talking about it is so important. You can't just keep it all bottled up.

3) Meditate
I am meditating DAILY. Whether its for 5 minutes in the waiting room at clinic so I don't kill the humming lady beside me, or sitting down with an app on my phone for 20 minutes I am making the time to sit and find a bit of stillness in my mind. This does not come naturally to me. It's hard, but I'm noticing it is getting easier as I continue with it.

4) Eat Well & Include Supplements
Food is fuel. It's so nice to have my appetite back and I'm enjoying eating vegetables and protein again. It feels good knowing I am helping my body recover by giving it the nutrients it needs. I'm also including (doctor approved) supplements to help support my body: probiotic (A LOT since I'm taking some crazy antibiotics to match the crazy anti-rejection drugs I'm on), B complex, Vitamin D (in the form of drops), and Zinc.

5) Maintain a Routine
I think it's important to still get up in the morning, wash my face, brush my teeth and have some sort of routine for meals. It just keeps you on track so you don't get completely lost in the stay in bed all day mode.

6) Find Joy in the Little Things
I realize this may start to sound like a self-help book, but honestly you have to take the time to find happiness in the little things. This year I decorated for Christmas a little early because twinkle lights make me happy. Being able to sit down and enjoy a hot breakfast makes me happy. Setting up my diffuser with whatever oil has caught my eye that day makes me happy. They don't have to be big, but you have to make them count.

Vulnerability

2018-10-16T13:28:00.000-04:00

I depend on a machine to live. Without that machine, I will literally just die (eventually). It's a very odd concept to wrap your head around. I don't tend to do well with feeling vulnerable. I make myself as big and scary as possible and hope my bark is enough that I don't actually have to back anything up - but I will if I have to. It's a very vulnerable position to be in a) again, the point of me NEEDING that machine to live and b) being locked up to a machine in your own home unable to move is also a very odd feeling. Besides the needling not going well yesterday, it was very eye opening how vulnerable I felt sitting there. In any emergency I would have to stop my machine, ideally give my blood back take my needles out and then I could run away from whatever (I watch a lot of TV these days...maybe not a good idea). I know I'm safe and it helps having Harlow here for back up (don't laugh at that statement if you haven't met her - she has my back, I don't doubt it for a second) but it's still a very hard concept for me to come to terms with. I don't like relying on anything, I very much like being able to do things myself.

Other than that, yesterday was a very good learning curve. I got to see how much set up at home worked and what needed to change. I didn't have enough lighting to really get a good look at my fistula for the needling (thanks to a wonderful client/friend that isn't a problem anymore with my fancy new lamp), and I'm not able to recline on the couch (if my blood pressure were to drop, I need to be able to tip back with my feet up) so we played around with that and a few other things to try and make my life easier. We have a game play for the next 3 treatments to make sure I have enough support available if I need it. The nursing staff has been AMAZING and has truly gone above and beyond to help me get home and stay safe.

I'm Doing the Best that I Can

2018-10-02T19:20:00.001-04:00

This seems to be my line this week. People keep asking me if I'm at least starting to feel better and I honestly have no idea. I'm sure I am, but I'm working seven days a week right now in order to accommodate dialysis training, so it's hard to say if I'm feeling any better because I'm still exhausted.

Last week was really rough. I had a few things come up that were just enough to push me over the edge from "sane and handling this" to "I'd like to fall asleep and never wake up". Hello mental breakdown. Friday was a rough dialysis treatment - everything went smoothly with two needles and we even got my pump speed up to 400 (that was the goal) but every fibre in my body did NOT want to be there. It was the most beautiful day outside and I was PISSED that I had to sit inside for this stupid treatment that takes up so much of my time and how come I have to do this but little Susie over there has never had a hard day in her life, blah, blah, blah. Yeah, it was one of those days.

Needless to say, I worked through it. Saturday was another gorgeous day and I spend the majority of it at the barn with ponies & friends - it was exactly what I needed.

So, now that I'm feeling a little less defeated and focusing on my dialysis training and getting prepared to bring it home the week of October 15th. One day at a time!

Nope Nope Nope Nope Nope

2018-09-11T15:36:00.002-04:00

I get why people quit. I get why people give up. I understand why people get caught up in the "why me" cycle. I'm currently in that head space. I'm frustrated and exhausted and so fucking mad that things can't just run smoothly. Today was a much better dialysis treatment. We decided to stick with one needle instead of trying to do two in order to give my arm some more time to heal up. We were able to take some excess fluid off and other than tired, I'm not feeling too bad, but that last half hour of my three hour treatment left me crawling in my skin. I wanted nothing more than to get out of the chair. My butt hurt from sitting on it, the blood pressure cuff (that goes off every half hour) and driving me bat shit crazy and I was tired and hungry. Miserable. I was miserable.

Then they told me they really, really want me to come three times a week starting next week. So that would mean I will be going in Monday, Wednesday and Friday (this is why I have clients schedule and typically go to the barn). We have been doing three hour treatments, but if the second needle keeps failing and we have to continue with one for a bit they are wanting me to add another hour onto my treatment. By the time I get the machine all set up, and taken down at the end I'm there for about five hours. If we add that extra hour onto my treatments I will need to leave 6 hours open in order to accommodate everything. That's 18 hours of my week that I need to make available for dialysis. That also means I am rearranging clients, when I ride, taking care of my dog, etc. I have to rearrange everything I just spent the last month organizing. And it's really fucking annoying. I don't want to do this anymore.

So here's the deal: I am giving myself the rest of the day to hate everything (like actually - I probably hate you right now for no reason). I get the day to be mad and sad and then tomorrow it's time to buck up and figure it all out. It's all part of the process and I know that by the time tomorrow rolls around I will have it all figured out (cause I'm awesome) :)

PSA: Words of encouragement are welcome. Unless you have done this before - suggestions/advise are not.

Hippie Kidney

2018-09-06T14:56:00.000-04:00

I have known for several years now that my last transplant was not going to last as long as we were hoping for. We started to look at another transplant work up almost two years ago. Within those two years I modified three main things in my life that have SIGNIFICANTLY helped me to prolong starting dialysis and stay off of as much medication as possible.

I tend to lean a little bit more towards the "hippie" side of things. Western medicine is the only reason I am alive and continue to be alive so that is always my first priority, but when there is a less westernized way of doing things I try to take that route as much as possible (for example, I love essential oils but I will not for a second think they can replace antibiotics). Here are the three big changes I made in my life to try and prolong the life of my transplanted kidney as much as possible:

1) Osteopathy
First and foremost I have to give a HUGE shout out to the amazing team at Goodwill Healing. Getting weekly treatments to help keep fluid moving and stabilize my structure as much as possible is the main reason I have been able to stay off as much medication as I have. When your kidneys start to fail they can't filter out the same amount of fluid they are supposed to so you start to retain it. It's really annoying - it feels like you are slausing around. Usually you get put on medication for this but I was able to stay off of it for a long time because of the osteos being able to keep it moving for me. It's made all the difference.

2) Medical Cannabis
I started using cannabis several months ago. I use the CBD oil during the day to help with discomfort, any anxiety, as well as helping to stabilize blood pressure (high blood pressure is another lovely side effect from kidney failure). The CBD oil is meant to return your body back to a balanced state without the high you get from the THC oil. I save the THC oil for the evening to help me sleep. Insomnia is another side effect from kidney failure - which is super fun when you are permanently exhausted all the time but can't sleep at night. The THC oil has been a game changer in terms of allowing me to fall and stay asleep. It's made me a much happier person to be around.

3) Being a Little Selfish
The last big change I made was always, always, always putting myself first. Some people may disagree with me on this one but I did make the metal shift to always putting me and my health first. I modified my work schedule to give me more downtime; I reevaluated some of the individuals I had in my life who were exhausting to be around; I made more time for the things that make me feel happy and healthy (horses, sleep, sunshine); I started saying no to things (this has been tough for me, especially when it's been things I WANT to do but know I don't have enough energy for); and I started taking people up on their offers to help me. It's amazing the shift that can happen when you actually start putting yourself first. I started to really not care what other people thought of me and this was SO LIBERATING. I'm doing all of this for me, so it really truly does not matter what other people think. It's become a much healthier way to live.

The only other thing I will say is nutrition does play a huge role. I didn't include it because my appetite has been shit and I have just been eating whatever sounds appealing to make sure I am getting SOMETHING to eat. Unfortunately, that has not been the typical green smoothie I would like to want to consume - it's been a little closer to ice Capps and junk, but nutrition does play a big role in this whole process.

First Go.

2018-09-04T14:52:00.000-04:00

Blah! Well I had my first dialysis treatment this morning and it kind of sucked. It will take a few weeks for me to start to feel the benefits so for now it just kind of sucks. The nurses were AMAZING - they made it manageable. I know it will get easier and it will just become part of my life but I was so excited to feel better I think I left the logistics of how crappy it is out of my thought process.

Before we started the dialysis I had all of my vitals done and they did an ultrasound of my fistula to determine where they were going to put the needles. They insert two needles into the fistula - one to take the blood out where it can be cleaned by the machine and another needle to put the clean blood back in. The needle that is supposed to put the clean blood back into me failed, causing massive swelling and a LOT of pain - I thought I was going to pass out but I was able to focus enough on my breathing to make it through it. They were able to make it work with just the one needle by adding another attachment and the pain subsided. They put some ice on my arm which helped with the discomfort. My arm is hella bruised and still quite uncomfortable.

After we got through the initial needle problem, it wasn't too bad. It wasn't painful which was comforting. This treatment lasted three hours and other than getting a little antsy the rest of it wasn't too bad. I will be going back again on Thursday - fingers crossed my arm heals up in that time.

I am absolutely exhausted and a little nauseous. I'm glad I have the rest of the day off. Nurse Harlow will take good care of me for the rest of the day. I'm trying to pretend it's raining so I don't feel so bad about staying in bed for the rest of the day.

Social Media

2018-09-03T20:12:00.002-04:00

I am getting ready to head to my first dialysis appointment tomorrow and have decided to open up some specific Jelly Bean Exchange social media accounts to further share my experience.

Check them out:

Higher Stakes

2018-08-28T11:43:00.002-04:00

I had the unfortunate experience of picking up one hell of a gastro-instentinatal virus over the weekend. It probably would have taken a normal immune system a day or two to get over it - it took me four full days of a low grade fever and all of the fun stuff that comes with gastro viruses. The biggest difference between me and the average person is for those four days I was put on hold on all transplant lists. Even if they found that needle in a hay stack during those four days, I wouldn't have been notified because I was sick. This is why I have such a strict policy on no illness at my studio and why I'm so crazy about lysol wipes, hand sanitizer and hand washing (just ask Wes). As of this morning I have been added back on to all of the lists and am looking forward to getting back to normal.

On another note, I begin my training for (wait for it) HOME DIALYSIS on Tuesday. Yes, that's correct I made the switch that I said I was never going to make. A wonderful nurse practitioner opened up my mind to other possibilities with home dialysis and another wonderful nurse even got me thinking about night time dialysis. The appeal of home dialysis is the freedom to do it whenever it fits into my schedule - the options are kind of endless. As long as I get a minimum of 12 hours per week, I can do it whenever I want. The appeal of doing it at night is it doesn't disrupt your schedule at all and if you do it every other night you can get up to 24 hours of dialysis per week instead of just 12. Remember when I said that when you don't get dialysis the toxins just build up in your body until your next session to cleanse everything? So in this case consistency is better. My biggest hesitation with doing it while I sleep is I am not a sound, quiet sleeper - I move around a LOT and I was concerned I would pull out my needles. The nurse who did my orientation assured me that I can tape it up and wrap it up so that nothing is able to move. I am starting with twice a week in the home dialysis clinic to lean how to do it myself and then will hopefully be able to take it home to do it myself in a few weeks. We are starting a bit earlier than we had intended - I got clearance from fistula people that I heal very quickly and it was ready for use and I requested that we start as soon as possible - I'm exhausted and ready to feel a bit more like myself!

Not a Holiday

2018-07-23T11:09:00.002-04:00

Trying to get rid of my hiccups.

Today is my last day off before heading back to work. I'm a little sad that I couldn't have more time off, it has been far from a vacation. This past week was rougher than I thought it would be, and not in the sense of my arm hurting - my arm has actually been the least of my complaints. I apparently cannot take T3's anymore without having a reaction. The first three days were spent vomiting and battling the longest case of hiccups ever. A full 36 hours of hiccups - I don't recommend it. Since then things have slowly started to improve. I've started to get my appetite and energy back. I've finally stopped vomiting and hiccuping, oh yeah and I believe the mysterious nose bleeds have stopped too (honestly, I don't get it either).

In terms of my actual fistula, it's healing quite well. I am actually able to type this using both hands, which is exciting. It can still be a bit sore at times and due to its location (right in my elbow crease) I still can't full extend my arm, but it's getting there. I am off of the extra strength Tylenol except for the rare occasion (if I use the arm too much). I am still on limited duties, not exerting myself at all. I joined Wes & Harlow for their walk this morning (obviously not the one walking Harlow) and it felt great to move. I will continue to take it easy for the week (not riding sadly) but better to put in the time now and know that I am doing everything I can to make this fistula work.

Ow.

2018-07-18T08:34:00.001-04:00

Well, it's all done! Yesterday went well and the fistula is so far successful. I was very impressed with how nice everyone was yesterday, they all worked super hard to keep me warm and comfortable. Last night was pretty rough. I'm not allowed to lay on my left side (where the fistula is) and that's typically how I like to sleep. They also encouraged me to keep my left arm elevated, so we had pillows to prop it up. Around 11:30pm the freezing started to wear off, but it wasn't until about 5:00am that my arm started to throb (even with the T3s that I caved and started taking). Right now I'm just sitting on the couch with my arm up trying to distract myself. I have to call my surgeons office to book a follow up appointment and will ask how much pain I'm supposed to be in. I'm fairly confident that my pain tolerance is quite high so this is really hurting (which seems fair - they did slice my arm open yesterday).

It's supposed to be a beautiful day and I'm planning on enjoying it on my fancy new porch - courtesy of my sister & aunt xo.

Once again, I would like to thank everyone for all of their support, positive vibes, gifts, etc. It really has made the whole process a little easier.

Stay Here.

2018-07-16T12:19:00.002-04:00

It's hard to believe tomorrow is fistula surgery day. Overall I'm really just annoyed that I have to do the whole thing. I'm not particularly nervous about the actual procedure, I know the surgeon could do this in her sleep; I am a little anxious at the idea that it could not work, and then I would have to do it again and/or get a catheter to start dialysis sooner rather than later. My whole thing the last few weeks has been to stay present (as cheesy as that sounds but it works), just really focusing on what I'm doing at that moment and enjoying it (really, that's how we should all be living all the time...). I've had a ridiculously amazing summer so far filled with concerts, trips, parties, cottaging, ponies, good books, fresh food - I've been very fortunate and I've done my best to take it all in and really truly be there and enjoy it. It's been wonderful.

I popped in for bloodwork this morning to make sure my potassium, hemoglobin, etc. levels are within a safe range for my surgery. As far as the process of the surgery it's starts tonight at midnight with no further food or drink and then clear liquids only until 3 hours before the surgery. It's just a day surgery so I'll be in and out tomorrow. I check into the hospital at 1:30pm and am set to go at 3:30pm. I am planning go to the barn and distract myself in the morning and then head in the afternoon. I have food ready (even though my appetite probably won't be there until the weekend, it's always the first thing to shut down and the last thing to come back when my body is under stress), I have a cleaning service schedule to come in Wednesday and we have a few possible light day trips planned for later on in my week off. As always, we are going to make the best out of everything :)

12 Hours

2018-06-24T20:16:00.000-04:00

I had the opportunity to check out the dialysis unit that I will be using in the fall. It was really nice to meet the (INCREDIBLE) nurses, check out the facilities and even meet some of the people on dialysis. It was a great experience that left me feeling much more at ease about the whole thing. I had been warned that the two ladies I was going to be talking to had been on dialysis for awhile so their fistulas were a little "ropier" because they had been used so much. They weren't bad at ALL!! I was so relieved that theirs were considered in rough shape and it wasn't nearly as bad as what I had built up in my head. The one women even had one that had been tied off and she just had a little scar, so if I do end up having mine tied off once I get a transplant it will just be a little scar on my arm. I was warned that because my arms are quite small in comparison to most dialysis patients that it will stick out a bit more on mine but still, it won't be too bad. The women that I talked to were so nice and welcoming and answered all of my questions. It will be nice to see familiar faces when I start there in the late fall.

We also talked about the possibility of doing dialysis 6 times per week for shorter amounts of time vs. 3 times per week for a large chunk of time each visit. I will need a total of 12 hours of dialysis per week and there is some flexibility in terms of how I accumulate those hours. With three times per week it will take about 4 hours of my day to complete everything. If I were to go 6 days per week I would only need to carve out 2 hours of my day each visit. With my schedule I am often working before work and after work with a few hours in the afternoon where I'm off. I would have to change very little in my schedule to find two hours per day to go in. The additional pro to going 6 time per week is your body stays a little more level in terms of the fluid and toxin build up in your body. Your kidneys are responsible for filtering out crap in your body, so when your kidneys aren't functioning properly the toxic stuff builds up. With dialysis it takes out your blood, filters it and puts it back in clean. When your kidneys are only functioning with the help of dialysis the toxic stuff builds up in between visits. So with 6 days per week it more consistently filters your system. So, we will see. It's kind of the same thing as picking between the fistula and catheter - they both suck, it just comes down to which one sucks the least.

Where Did My Reins Go?

2018-06-02T14:12:00.000-04:00

I am having one of those weeks where I am extremely annoyed that this is my life. I'm mad that I have to get a fistula next month, I'm mad that I need to get dialysis three times a week in the fall, I'm mad that I need another transplant and will have to take time off work and most likely loose a chunk of the clients that I have spent the last 10 years building. I'm just all around angry. I did my best to not take it out on the rest of the world this past week but on top of naturally having a bit of a temper, plus the rage-casing about my current life predicament, failing kidneys also tend to cause an increase in irritability. So basically, I'm considering the fact that I managed to not kill anyone a win.

Physically I didn't feel too bad this week. I rode a few horses, walked the dog, did some gardening and even fit in a few small workouts. With all of the anger building up I needed an outlet - hence the mini workouts. I haven't had much energy for actual workouts, it's mainly been riding and walking Harlow, but I've always used working out as an outlet for my hothead tendencies, so when I was feeling so frustrated, working out was the only thing I could think of to help work through it.

My plan for today to take the bulk of it to myself. I don't think I am going to be the most pleasant person to be with today and I need time to recharge on my own. I am going to get as much of my life in order as I can. Clean up the apartment, plan out my week, etc. My goal is to feel as in control over the things I can control so I can stop obsessing over the things that I cannot. It's a technic I was taught awhile ago while I was working through my past struggles with eating disorders. Letting go of the things I can't control and focusing on the things that I can: a clean apartment, an organized week, maybe a mini workout, etc. They don't have to be big things, just things that I can control the outcome of. I am also going to take a page from my dog and the horses I work with to take one step at a time. Focus on what is happening right now, at the moment and try to forget about the not so fun things to come.

Resting In the Sunshine

2018-05-20T14:40:00.000-04:00

I am crashing HARD today. Between getting my period for the first time in three months (it happens - deal with it) and perhaps over-doing it the last couple of weeks I am STRUGGLING. This morning I was super shaky, dizzy, nauseous (actually vomited) and FREEZING. Sounds like the flu right? WRONG, welcome to an exhausted Megan. This is what my body decides to do to me to force me to rest - I puke (fun, right?). I am having a hard time remembering to rest in the warmer months. In the winter it was easier -when I had some free time I would cuddle up and take a nap, or take some quite time inside. It's hard for me to stay in bed and rest when it's nice out. I LIVE for the sun, but I forget that I am just as sick and exhausted (if not more so) now than I was when it was colder out and I didn't mind hibernating. So I am going to have to reevaluate how I "do summer". I'm used to being active and spending as much time outside as I can. Unfortunately, just "resting" doesn't always cut it, sleeping seems to be the only thing that really actually helps. This week in my spare time I did a lot of gardening, a lot of really long unnecessary walks with Harlow, I helped out a little extra at SARI, on top of my regular work load. And today I'm paying for it. Luckily, it's not a super nice day today so I don't feel as guilty staying in bed for a few extra hours in order to be functional for the rest of the week.

Hope you are all enjoy the long weekend!

Side Effects

2018-05-05T16:53:00.000-04:00

I am feeling much, MUCH better after my nephrologist changed a bunch of my meds around on Wednesday. My blood pressure was 121/69, which would be pretty darn close to perfect if that wasn't with several medications that were causing the fogginess and overall blah feeling from my last post (I believe some of that blah was a combination of meds, vaccines, exhaustion, etc.). I am still battling with very little appetite and some nausea but "knock on wood" haven't actually vomited since the med change. All of my other numbers have started to really reflect my failing kidney (I knew that going into clinic - I can certainly feel my body struggling). My nephrologist wants to see me again next month (instead of every three months) to check in on the changes to my meds and we will be keeping a close eye on everything to make sure October is soon enough to start dialysis. I will be getting my fistula in July but it takes time to become useable, so we would be looking at October to start dialysis. If I need dialysis before October I will get a catheter put in temporarily until the fistula becomes useable. There is also the risk that the fistula won't take, fingers crossed this doesn't happen, but if it does, I will certainly need a temporary catheter until we can make the fistula work.

Overall, it was a good clinic visit and I am very excited to be feeling more like myself. It has been incredibly helpful to have some summer weather (although, I learned the hard way that one of the side effects from some of my meds is I am more vulnerable to sun exposure - I am rather lobster like after spending the afternoon in the sun). My health always improves slightly in the summer and I am SUPER excited to have some room to grow a bit of a garden this year; it will be a nice little project over the summer!

Blah

2018-04-26T13:45:00.001-04:00

Is it my failing kidney? Allergies? A reaction to the vaccines I got Tuesday? Food poisoning? Side effects to my meds? Exhaustion? Lack of food? I may not be able to identify why but all I know is I feel like absolute crap this week. I'm foggy and dizzy and have this constant pit of nausea in my stomach like I could vomit at any moment (and sometimes am). I'm having a terrible time finding food that looks appealing enough to eat and even when I do there is a 50/50 shot that it's coming back up. I have resorted to eating whatever looks or sounds appealing - timbits for breakfast? SURE! An ice Capp counts as a meal right? As a lover of things that are green in my diet this has been brutal.

I have my regular nephrologist appointment on Wednesday. I am hoping I am able to snap out of this funk before then, but if this is kidney related it could be my new normal until I start dialysis. If that is the cause I am going to have to start to take some regular doses of gravol to at least attempt to get a meal in so I don't feel like I'm going to pass out every time I try to stand up.

In the mean time I am going to attempt to enjoy that beautiful sunshine that is out there and take it as easy as I can.

Tell Me Something I Don't Know

2018-04-16T17:13:00.000-04:00

Today (yes, the whole day) was spent at the hospital going through a bunch of different appointments to prepare for transplant (when it eventually comes). I started off with twelve tubes of bloodwork and then met briefly with the social worker, transplant recipient coordinator, anesthesiologist and lastly, the surgeon. Overall, I didn't learn anything I didn't know already. I was very impressed by the last two appointments, the anesthesiologist acknowledged that I have already been through this process a few times and promised to keep me asleep as long as I needed to be asleep and then wake me up when it's time to wake up - that's pretty much all I can ask for! The surgeon that I met was different from the one I had during my second transplant at UH, but equally as wonderful. Based off of the positioning of my previous two transplants, they are going to put this next one on my right side (the same side as my first transplant). They will have to do a mid-line insertion, so right now the middle. The plan is to keep all of my previous kidney's in - they act as a buffer against rejection. Basically, my body is used to fighting against the "foreign object" (my previous two kidneys), they hope is that if you keep them in, my body will continue to just fight them and leave my new kidney alone. If they take out my old, unplugged kidneys it will put more attention on the new kidney and put it at a higher risk for rejection.

I am still going to be challenging to match but there are a lot of programs in place to help people like me find good matches. My kidney will most likely come from a deceased individual from a different province, but a live donor is still our first preference if we are able to find one, or do a swap, or something along those lines.

Overall it was a long day, but not too bad. Mainly I'm frustrated that I had to take a whole day off of work (unpaid - hello self-employed) in order to talk to people about things I already know. I still have to meet with the transplant nephrologist and get a CT scan for them to see what exactly is going on with my insides to figure out where to put my new kidney. On a plus side, I got to pop into Wes' office and meet the second cutest little puppy! Not a bad way to kill some time between appointments.

Exhausted Pigeon

2018-03-28T18:02:00.001-04:00

Oh my God I am exhausted. I am like a whole other level of exhausted I didn't know existed. Part of it is I need a break from work (I get four days off for Easter), but really it's just the fact that I have a failing organ and my body is struggling. I have to say my doctor timed it perfectly. I am now at the stage where I am so tired I won't put up a fight about dialysis anymore. I'm not going to go as far to say I'm looking forward to it (cause I am certainly not) but I am looking forward to having a bit more energy. It's incredibly frustrating when activities that used to be the highlight of my day now very much feel like a chore (walking Harlow, keeping the house tidy, working, and even some days going to the barn). All of those things make up my life and make me HAPPY - unfortunately, a lot of the things that make me happy are ACTIVITIES and require movement and energy, it sucks having to pick and choose certain things each day because I only have energy for two big things. Work is typically one of them and then I can pick either cleaning something, or going to the barn (any guesses on which one wins?).

Overall, I'm still trucking through everything. I have a lot of not so bad days where I can get through everything and still feel like a living person at the end of the day, but I can definitely feel a shift: a decline in energy, I'm more irritable, appetite is iffy, etc. All reminders that my reality is I have a failing kidney and it's not going to get better on it's own. I'm just doing the best that I can to take it day by day. I'm looking forward to the nicer weather when I can sit outside and enjoy the sunshine. It's been a very long winter.

Glorified Gongshow

2018-02-24T20:38:00.000-05:00

I recently did an interview with CBC talking about my situation and organ donation. I had a few people mention that I have a tendency of making it sound not as bad as it really is. Itʼs true, I know I do that. I donʼt like pity - I donʼt know how to handle it, and to be honest, while my situation absolutely sucks and is terrifying, sulking isnʼt going to get me anywhere. So, yes I am angry and terrified but Iʼm much better at doing something about it and moving forward than I am playing the victim. Plus, most people don't actually know what to say to me when I do talk about it (really, there isn't anything you can say) and it's awkward for everyone (I tend to find human communication a little awkward to begin with, so throw some pity in there and I'm really uncomfortable). With all of that being said, I'm always happy to answer questions and appreciate everyones support and positive vibes.

On another note I have made the final decision to go ahead with the fistula. I went back and forth between the fistula and the catheter, and after talking to the most wonderful, patient nurse about my options (again), the fistula is, unfortunately the better of the two super crappy options. The risk factors and longevity of the catheter pose too high of a risk. There is a risk for infection, blood clots and some major complications if one, or both of those things happen. She did mention that if it is absolutely vital for my wellbeing, they can reverse the fistula once I get a transplant. The idea that it wonʼt be in my arm forever is enough to make it bearable. At least with the fistula, I don't have to modify much in my life - showering, riding, working out all stays the same. I have a surgery date set for mid July.

No More Donuts

2018-02-11T22:43:00.003-05:00

I want to start off by saying thank you to everyone who has offered their kind words and positive vibes these last couple of days - they've been tough. If you asked me how I was doing in person, you would have got the "I'm okay" response. I don't know how to reply any differently, I guess it might be my way of trying to convince myself (or, you know I have issues with being vulnerable, cause I'm a control freak...that's an issue for another lifetime I think). The truth is, I'm struggling, but I don't know how to do that. I do know how to buck up, get my shit together and move forward - so that's what I'm doing.

After talking to a couple of resourceful clients and doing a bit more research I have started to reconsider the catheter option for dialysis. I don't know if I can mentally handle having the fistula in my arm forever. If that was my only option, sure I'd make it work but between the timeline on the fistula and the two needles three times a week, it's looking like a bigger commitment. There is a lot I don't know about the catheter still. When I went to the consultation I already had it in my head that I was getting a fistula, so I didn't listen as well as I should have to the catheter-talk. I made another appointment with the nurse to do a do-over appointment to get all of the information on both options again in order to reassess properly.

Well F*CK

2018-02-07T18:39:00.000-05:00

This has not been my favourite week. Yesterday I met with the surgeon who will be doing my fistula for dialysis access - she was great, I really liked her and her team. What I didn't like (HUGE understatement) was learning a bit more about the two options for dialysis and what the rest of my life is going to look like.

First we went over a few things about the fistula that I didn't know:

1) THEY F*CKING LEAVE IT IN YOUR ARM - FOREVER! I have NO idea why no one has told me this yet! Once it's there - IT STAYS! I assumed (never, never assume) that once I got the transplant, they would put my arm back to the way they found it. This is not correct. They do (of course) have good reasons for it:

a) They don't necessarily insert anything to create the fistula, they simply merge a vein and an artery to create an access point for dialysis, so it's not like they can go in and take out the tubing, or reverse it.

b) There is always the chance that I will need dialysis again - even if I did get the transplant, there is always the risk of rejecting the kidney, in which case I would need dialysis again; and/or, eventually in another 10-15 years when the 3rd graft (transplant) goes kaput I will already have that access instead of having to go in again to make another one.

2) In order to hook up my fistula to the dialysis machine (THREE TIMES A WEEK), they poke me with two, TWO needles into the fistula. Two needles into my fistula...three times per week...potentially for....years - SUPER! HONESTLY?! That SUCKS! Think of the scar tissue that is going to build up in my poor arm!

I should mention that at this point in the consultation I had this really funky giggle going on, in addition to actually saying the word f*ck a few times to my surgeon - she may think I'm insane but kept her judgement to herself nicely.

It was also at this point in the consultation that I asked her why on earth anyone would pick a fistula?! It was at this point that she went over a few points about the catheter option:

1) The catheter gets inserted into the chest and connects directly to your heart (umm, yikes).
2) The risk of infection is higher because it sticks out of the skin.
3) YOU CAN'T SHOWER, or go swimming, or get it wet (so hello sponge baths...)
4) Sometimes they can close off and you have to go to the other side, this becomes dangerous to loose blood flow so close to your heart)
5) Scar tissue in the area seems like a bad idea to me

These are my two options. Seriously. Seriously. Like honestly. Snake in my arm for the rest of my life, or not showering, for you know a few years. Getting poked in my arm twice per week, or not riding. So, as absolutely ridiculous as it is that THESE are my ONLY two options, the fistula is still a clear winner in my mind (if you can even call it that).

There were lots of tears (and evidently donuts...) yesterday, but I'm slowly working through yet another mental setback. I was saying to my mom today I really wish they had just told me ALL of the bad news at once so I had time to wrap my brain around it and get over it. I feel like every time I get myself pumped up about needing to do this they tell me something else that is just brutal and I have to get myself back up again.

My doctors have been great about coordinating the fistula surgery with my schedule. It will be at some point between June-August. My plan is to take that week off work and take my dog up to my Aunt & Uncles place to recover by the lake - might as well enjoy the forced time off.

hey Hoits - hope you don't mind the self invite - Harlow & I (and maybe Wes & a sister) will see you then! ;)

O +/-

2018-01-31T23:05:00.001-05:00

I need a kidney! You have organs!

Interested in getting tested to see if you are a potential match?

You can started by emailing livingkidneydonation@lhsc.on.ca

Love & Gratitude!

Why Me?

2018-01-31T23:02:00.000-05:00

I hear a lot of "why me" comments throughout the day. From clients, from friends. Inconvenient, sometimes earth shattering things come up in their life and there is always some form of why me?

In my opinion, there are two main categories of why me:

1) I like to refer to the first one (and unfortunately, usually the most common) as "fuck me, this can't be happening to ME".

2) Why Me? What is it I am supposed to learn from this? How come out of all of the people in the world, this particular circumstance is occurring in my life? I am not suggesting that our entire lives are mapped out for us, I strongly believe you make your own outcome - however; I also strongly believe things do happen for a reason and if you are paying attention there is an incredible opportunity to grow into a much better human being.

Let's go back to the first version of "this can't be happening to me" for a moment - you see the problem with that statement is it implies that you would prefer that situation to happen to someone else.

My situation SUCKS - big time, but I would NEVER, EVER, EVER wish this upon someone else. My situation SUCKS, but I can handle it.

I don't want to have to go through with another transplant, or dialysis, or any of that shit, but I know I can do it and I will come out the other end a stronger person because of it. For some reason, I am supposed to do this ~~again, again~~. There is still something I need to gain from this experience. So, after some serious soul searching, and having conversations with whatever ruler of the universe was listening, I've come to a place where I can continue to look at this situation with an open mind.

I am open to growth; I am open to support;

& I am open to making the best out of a very inconvenient reality.

"I know God won't give me anything I can't handle. I just wish he didn't trust me so much"

- Mother Teresa

More About Dialysis

2018-01-28T20:07:00.000-05:00

For those of you who have been asking how exactly a fistula and dialysis work, here is the best link I could find to best explain it all!

https://www.niddk.nih.gov/health-information/kidney-disease/kidney-failure/hemodialysis/vascular-access

Appearances, Baby

2018-01-28T19:46:00.002-05:00

Throwback to beautiful Bowen Island.

Growing up we had a cat named George. A few years after we made the tough decision to put him down, we got two new kittens. It wasn't until we got the brand new shinny kittens and started looking back at old photos of George that we got the whole picture of how OLD and ghostly he looked. He didn't seem that bad because we were used to him - sure he occasionally fell off the couch and took awhile to wake up again, and he was really just skin and bones, but he was George!

See where I'm going with this?

I was looking through some pictures today and realized how good I looked a few years ago (yeah, yeah - I look wonderful now - thank you). I was strong and rested and all fresh- faced. It got me thinking that maybe it is time for dialysis (I already knew that, but now I KNOW that. I know my doctor is on top of things and I trust him fully, it just takes me a little longer to come to the same conclusion myself). With dialysis helping my system function, I'm hoping to be able to do a bit more of what I used to be able to do. I'm still able to do a lot, sometimes more than most people without kidney issues, but I used to be able to do more and I looked good doing it (wink-wink).

I've also started to come to a better mental place with the idea of a fistula and all of it's grossness. I don't gag quite as much as I did previously. I had the idea that I was going to need to get more long sleeve shirts to cover my arm. I've recently decided that I do not need to cover my arm to make it more comfortable for other people - they can deal. I've decided to just go ahead and rock it. There is a good chance I am going to be on dialysis for awhile and I am not going to keep my arms covered for the next however many years.

This is my reality and I am going to rock it.