TACRO

Mid April 2010

2010-04-12T01:59:00.000-07:00

   So yes, its been a while since the last update. The graft (organ) is still going strong. And I got taken off a couple of more medications. Still waiting for word on white cell count recovery. Tomorrow (or should I say today), I'll be seeing one of the 2 head coordinators for the UW transplant team. The other half is the surgeon who did my operation. The doctor half is Dr. Connie Davis.
   She's the type that looks intimidating because of her height. I am easily intimidated by people who are shorter than I am and have medical degrees. Thats just me, and I'm getting over it lol. But she is an awesome doctor, seriously, I am thankful God put her into my life.
   You know, I can't help but talk about God, as you can see. I just can not imagine going through any of this without Him. On my own I suppose it would have been a losing battle. A. Because I cannot stand needles and B. I cannot stand needles. But really, there has got to be a source of the supernatural in there to give power to overcome this stuff.
   The sun is out in Seattle. The temperature is leveling off to a decent 50. I hope Monday brings good news. Will post a status on Fb soon. There's nothing to say except, have a beautiful and blessed rest of the week.

2 Months of Freedom from the 'chine

2010-02-27T23:28:00.000-08:00

RECAP
   January went by so fast, I can't remember what we did or if we did anything of significance, aside from living the normal, suburban life. I do recall getting my Tacrolimus increased which is fine with me. What DID we do in January??? LOL! OH! My children started Junior Bible Quizzing and won third place :D
   February is coming to a close, and with a roar might I add. No pun intended. Started the month with a viral infection that almost killed me. Thank God, its getting treated now with oral medication. The pain was pretty harsh though. I'd rather go through another angioplasty WITHOUT anesthesia again, than to have to go through all of what happened. The virus is called CMV and is common among children. As you get older your immune system eventually suppresses it enough, so that you don't have any recurring infections. Transplantee's and other patients who are on immunosuppresive drugs are mainly at risk for reactivated CMV infection. I think the virus count in my blood got to about 8000 before I finally complained about the pain lol.
   Pain and I are good friends. We get along nicely on one hand, and on the other I tend to squeeze the Lord's... and I'm sure you might be able to see my nail marks on His hands ;) CMV affects everyone differently. You may feel symptoms throughout your body but mainly it affects the abdominal, esophagus areas. And thats where it affected me. If you've ever experienced having an ulcer, think of a CMV infection as having 40 ulcers going off all at once.
   CMV can be treated by oral or intravenous medications. I'm on an oral one and it seems to be working. I feel 100% better and the pain is quite gone.
   MARCH is just 48 hours away. I'm not quite ready for it yet. March being my birth month and all. When you have been sick for a very long time, you tend to count your days and live each one as though it were your last. When that is taken away (not saying its a bad thing), you tend to look at life with a different set of eyes. I no longer see life being stuck in a 4 cornered room 8 hours a day, 3 times a week.
   I now see life beyond the horizon. And it is, B-E-A utiful :)

Reasons why I'd want to move back to Oak Harbor:

2009-12-26T16:46:00.000-08:00

- Get away from Puget Sound I-5 Corridor related Traffic craziness
- Get to live in the main part of the infamous 'convergence zone'
- Sales Tax is lower than King, Pierce and Snohomish counties
- Population growth is tempered by the Whidbey Naval Base
- Did I mention the traffic is significantly milder than down hither?
- Closer to the Robinsons of Anacortes
- My son would say he'd died and gone to heaven listening and watching all the military planes
- Get away from certain relatives, not naming names.
- Wouldn't have to worry about traffic..oh yeah I said that already

   This week went by faster than latkes at a Sabbath dinner. I so enjoy seeing relatives that have been hibernating since before Barack Obama became president. Thats always a great thing. And what I mean is, face to face. Facebook is well and good, but nothing like the real thing right? I'm thirsty right now for some reason.
   Been frustrated as of late. Won't go into detail, just keep me in your prayers tonight. So ready for the Lord to come back, anxiously waiting. Meanwhile, His work continues. I'd like to be a part of that Great Commission. During the next couple of weeks I'm sure many of you, including yours truly will be re-evaluating our year and what we have learned, what we have gained in wisdom and knowledge, past mistakes, past successes, blessings, trials and future goals.
   One thing I have learned this past month, busy-ness, has consequences. Sooner or later, we forget to keep the main thing, THE MAIN THING. And the main thing is to Love God, and Love your neighbors. I've been guilty of harboring anger against fellow brethren and I do not want that to keep me out of heaven. Of course who doesn't love the hustle and bustle of Christmas?!!! An extrovert by nature, I am not one to shy away from having a good time.
   But again I say, busy-ness, has its consequences. I am guilty of the 'Martha' syndrome. This coming year I want to learn to be a 'Mary'. Sitting at the feet of the One who is gracious, and loving, and willing to let me start over again. Will you join me? It only takes one step. Every step you take, He'll take leaps and bounds to be with you.

December brings glad tidings of comfort and joy....

2009-12-16T00:56:00.000-08:00

.Sixteen years living in Seattle and still, the weather is choice topic starter. Thank God for a warm and dry house this year. I am thanking God for material blessings . We receive graciously and we gladly thank you O'hana.... And most of all I am thanking Him for the gift of salvation.
Now, I realize that November has passed, but Thanksgiving will never. So this is an extension of my gratitude to a loving Father. This is His time. This is His celebration. Salvation is the greatest gift human kind could ever hope to receive. And we ought to receive it, for He is offering it to us. We who are unworthy, can be recipients of the richest gift of all time, of all ages.....He, Himself.

Rebirthing

2009-11-18T18:58:00.000-08:00

It has been approximately 2 months since surgery, and I am doing very well. To the left, is an image of my current medications and the 'mediset' to which I fondly call, my dinner plate.

   I renamed this blog Tacro after one of my medications, Tacrolimus the brand name being Prograf. It is the main anti-rejection pill (along with some others) that I take in order to prevent, well, rejection.
   Its a potent drug, with side effects ranging from the 'shakies' (tremors) to intense headaches, of both I have experienced, (and have not enjoyed). Though the shakies are somewhat amusing. I, who have scoffed at tremors in other clinical patients, am now a first class, shaky myself. In other news, unrelated to kidney disease, the weather in the Pacific Northwest has officially turned, soggy. The ground, the roof, the air, my driveway....all soggy. They should add another climate term right after 'rainy and cloudy'....and 'soggy' fits the bill. Daily life around here is back to some semblence of normalcy. Our family is functioning according to the amount of prednisone I have in my blood stream. I am tempted to put a Mommy Mood Gauge of some sorts on the wall, just as a precaution to my dear love ones. They need not anticipate a surprise visit from the Mother from....well...you know...if they can see it on the wall, they can prepare.
   Cynism aside however, and I blame the negativity on medication, easy out, right? Really, it has been a fun experience rediscovering who I am, and how kidney disease has re-defined yet re-affirmed some things in my life. Faith in a real, tangible, loving God, faith in His Word and seeing it come alive in front of my very own eyes, the power of prayer.....these have been re-affirmed and refreshed in my life.
   The redefinition comes in the form of actual, physical manifestations. I literally feel, brand spanking new. And thats not metaphor for my spiritual body, I'm talking about my flabby, 30 lbs over weight, over-eating, medicine junkie, physical body. There's no lingering weakness in my joints and muscles anymore. And certain, female attributes, of which I will not indulge in a public forum, are functioning again. I'm able to look at a life of opportunity without the constraints of physical weakness.
   It's a great place to be, expecting wonderful things, being on the edge of welcoming something wonderful and not knowing what it will be. There are things that remain the same however, the God whom I serve, His Word, my family, the people who've supported us every step of the way. They remain the foundation. And I'm thankful that I can build upon something that won't sink, that won't crumble or fade away.

Catching up with the rest of humanity

2009-11-04T17:12:00.000-08:00

It has been 7 weeks since the surgery and I am feeling mighty fine. I am looking mighty full in the face, but otherwise great, considering 1 kidney biopsy, 1 stent removal and countless changes to my antirejection medications.
For this posting, I'd like to remain optimistic about recovery. Even with all the changes to care, I remain a human being still. And I have been guilty of letting the disease define who I am. Well, there are no more excuses. The numbers look good every single time I go to clinic....so what am I waiting for? The purpose of this blog was to journal my experience as a dialysis patient. I never thought there'd be a day where I could actually say, that part of my life was over. Expecting it, yes. But later rather than sooner.
I beg the question, NOW WHAT???!!! Well, now. Its game time.

So 2nd life begins....

2009-10-09T05:42:00.001-07:00

September 19, 2009
-Had been dealing with mixed emotions and frustrations about all this sickness bidness. All the cares of this life were taking a toll on my poor husband and I could see it in his face. Kept praying, kept watching, just kept on walking minute by minute, day by day, doing my best to serve Him and be the Keeper. Finally I remember going to bed that night and of course checking out FB, read a bunch of encouraging posts from all you lovely people out there and decided, 'You know what? I am going to just LET IT ALL GO!'...

September 20, 2009
-Sunday morning, woke up to a gorgeous sunny Seattle Fall day. Air wasn't as crisp as it is now, but still chilly;) Church went awesome! New location, people hungry for the Word, and saints truly worshiping. Something was a little different though. Wasn't worrying over things like bills, kid's education, dialysis. No, actually enjoyed His presence without that nagging bit.
-Went home and kissed husband goodbye before he went to work. Just a nice leisurely Sunday afternoon with my daughters. Bud went with Aunty and cousins to a birthday party.
-It's about 10pm-ish and the phone rings. Its my nephew calling to say they were dropping Bud off home now. They're near Enchanted Village. Alright, great! The girls, "ohhh, we were having such a nice QUIET evening" haha... seriously though, they need a break from the electricity.
-Phone rang again at 10:25pm, Blocked Call it says. Do I answer? Usually not. But blocked calls could mean my sister in law in Hawaii, OR friend from church. Fine, I'll answer.
"This is the University of Washington, may I speak with Wendy Cacho?"
"Yes this is her"
"Hi, my name is Jennifer and we're calling to let you know that we have a possible kidney for you"
"Are you serious? Is this a joke?"
"Um, no?!" (and she repeats her prior statement)"Will you be able to get here tonight?"
"WILL I???!!!!"
And it is at this time when I tell both girls, who eavesdrop on EVERY phone call in this house, that "It's the UW and they have a kidney for me!!"
Both girls shout, jump, dance and scream. It is a memory that is branded in my mind forever.
"Yes I'll be there within the hour! Thank YOUUUU!"
More jumping and screaming ensues. Oh no, no van. No ride! Wait a minute, Aunty's coming over right? Gotta call the Aunty!!!!
"Hi Ate Sheila! Guess what?! UW called and they have kidney, but I don't have a ride, can you take me and let the kids stay at your house till Mike comes home?"
More screaming ensues. Made phone calls to the Seagraves and my mom.
-11pm Kids are settled at cousins and Sheila and I are on the freeway just praising God and talking about His goodness. Because this is not just my victory, this is hers and yours also!
-Arrival at the hospital, butterflies in my tummy, got the entire heavens listening to my one meager plea and I'm sure the Lord is just smiling away. The Seagraves arrived before I did and what a sight to see! Heart swelled up with so much love for God's people. They are there to stay till husband gets home and can come. Wasn't kidding when I told them that they're my 2nd set of parents.
"Pastor, you weren't kidding when you said that healing would come soon." This was a few weeks before that he had said that to me. Another person arrives in emergency room, and he is the recipient of the other kidney from the same donor. Pastor helps them to their room and comes back with a funny tale. The other patient's wife seems to think that I am the Seagraves' daughter. SWEET!
- Doctors from the transplant team come in and out of the room with news, or no news. Sister Seagraves and I dose off a bit and can't stop talking about His goodness. Dose off, talk, dose off, talk. This went on for 4 hours.
-Husband arrives, Seagraves go home to get rest and we spend the early morning of September 21, 2009, sleeping. That's right. Sleeping.

September 21, 2009
- Doc arrives with some news. The kidney isn't perfect but its in good shape. The donor had diabetes but was managed very well. Husband looks very worried. Surgeon comes in with more details. He says that the entire team is divided as to whether or not I should take it. I tell them to give me more time to talk to my husband and family. Call the Seagraves at about 8:30am and explain.
"Well, Sister Wendy, you could look at it this way. That kidney is going into a Holy Ghost filled body!"
That did it for me. But what about Mike?
"Pastor could you please talk to my husband? I don't want to do anything until I know he's 100% behind me in this decision."
Thank the good Lord for the Seagraves.
-Surgeon comes back and I tell him YES, I'll do it! New problem. The OR is booked until the early afternoon. Its okay I say, I'll wait.
-Its afternoon and Sister Seagraves can tell that I'm getting nervous. So we have one last prayer meeting of sorts before they wheel me down to never-never land. I must mention, that although I write with great urgency, the peace of the Lord was there. It was as tangible as the air that I was breathing.
-Arriving into recovery was tricky. And you know when you're coming out of anesthesia? You say the FUNNIEST THINGS! And when you get the chance you can ask the Seagraves or my husband what it was I was saying.

September 22, 2009
-Recovery is going well. Being pumped with anti-rejection medication, what they call the "BIG GUNS". My immune system is vulnerable and I'm a little nervous. The Lord knows and He hears.
-I finally notice how HUGE the incision is. Now I understand what C-section must be like. UGH lol.
-Team of doctors show up 2 times a day and one of them gives me the 'Rockstar' status, whatever that means;)
-Can't keep still. Gotta move move move. Start to take walks around the floor at 3am in the morning. The nurses are getting used to my routine apparently because I hear one of them say, "There she goes!" hehe.
-Ballooned to 180 pounds mostly fluid and I look..like..a...HOUSE! Seagraves stop by before they leave for General Conference that evening. Isn't it wonderful how God worked out the timing for them to be here when the call came??? That's is ALL God.

September 23, 2009
-YAY i can eat solids today! But all I can keep down is chicken noodle soup. Dietitians tell me I can slowly start eating normal again soon. When's soon? My guts are slowly waking up from surgery they tell me, so don't over do it. At this point I'm already nauseated.
-Starting to notice side effects of medication. Burning hands and feet. Hot flashes. Oh did I mention the cathetar? Well I won't go that indepth but yes I had one for 2 days.
-Now this may sound gross to you FYI, but kidney patients who are on dialysis, don't urinate. Oh some do, but its not good urine. So the last time I ever did was back in July of 2007. So don't ever take your body for granted people! Anyhoo, the kidney was working! And when they took it (cathetar) out, I felt like a toddler in potty training. Seriously.
-In laws pay a visit. And father in law is a happy camper. He worships God right in front of us and I am blessed that he is blessed.

September 24, 2009
-It's Lizzy's 10th birthday. And I'm in the hospital. Crying ensues. But that child has got a heart of GOLD. She's not phased at all.
"But Mom, this is the best present ever! You have a kidney!" Are you crying yet? Because I am.
Don't worry though, Grandma took care of everything! YAY FOR GRANDMA!!
-Doc arrives and I can go home tomorrow! Everything looks good. Blood work looks great! Praise God!

September 25, 2009
-All the tubes and needles come out including a pickline that was in my neck. Don't mean to complain, but going to the bathroom every 20 minutes is not conductive for good sleep. Eyes are bloodshot and I still look and feel like a house. But the fluid is leaving no doubt about it.
-Get educated about the medications I'll be taking. Tremors?? Mood swings? WEIGHT GAIN?!!! Oh Lord give me strength!
-Family arrives and children are ecstatic. Husband is hovering like Mother Goose and I'm enjoying every minute of it Thank you very much. These are my caretakers. And they are the BEST EVER;)

Today
-Moving faster now. Still need help getting up and stuff. Today is my 5th clinical appointment since surgery and am getting used to the routine. Don't have to go to the bathroom as much because most of the fluid is gone. Actually all of it. I notice my skin tone and notice that its not so bland anymore. The side effects of the medication are taking its toll and I cry at the drop of a hat. Poor hat. Tremors are in full force and I can't hold anything without thinking will I drop this hehe.
-At least I can type THANK GOD!
-So Wendy, what have you learned throughout this entire ordeal? I've learned that when you take God at His word, and believe and act on His promises, expect the unexpected.

Sorry this was a long read. Hopefully, you've been encouraged. I always like to say, that this wasn't just my victory. This was yours too. Bye!!! for now.

Nocturnal Dialysis

2009-07-26T23:40:00.000-07:00

There is one Davita clinic in all of our state that is trying out nocturnal dialysis. And I am priviledged to be one of the few patients who will be receiving it:) YAY! There are a few chairs and only one isolation room so, thankfully a spot opened up for me.
My doc practically pushed me into this program mainly because he felt that the longer treatment at a lower speed would help me feel much better. Better than a four hour one. Which is already grueling.
Mainly looking forward to how it will make me feel over all. Tired of feeling tired and getting frustrated at myself because there are so many things I want to accomplish and no physical strength to back it up!
Also, Thank you Jesus, I am now on active status on the National Transplant List! Time to move forward in the Lord and to go where He is leading me.
I'll keep one eye on the clouds though. His return is coming soon:)

Weekly Round-up

2009-06-03T10:15:00.000-07:00

Treatments went very well this week thank God. I haven't been putting on my cream early enough though. But the tech who was working those times is very effecient. Although, I think she gets sort of a pleasure of some sort sticking the needles where I'm not numbed up. She told me that people call her the dart lady. EEESH.
Sometimes quick pain is better than the lingering kind.
I was scheduled for an appointment to see the transplant surgeon on Monday and the coordinator called and said that all the surgeons would be in the operating room that day. Isn't that wonderful? No really! That means there are people who are receiving kidneys!
My turn will come soon, Lord willing. And for that I am greatful.

Phenergan

2009-05-26T09:12:00.000-07:00

So, Phenergan , I have found, is not good for me. Last Saturday, I woke up feeling a little nauseated, which is not often, but uncomfortable nonetheless. When I arrived at the clinic, I told the tech about the nausea and she suggested 'Phenergan'. The dialogue is as follows:

"Will it make me drowsy?"
"No, it won't make you drowsy."
"Are you sure?"
"Yes, it shouldn't make you drowsy."

Alright, so she tells the nurse on call. About 10 minutes into the run, the nurse comes in to do the dailies (Daily Assessments) and medications. He pushes the Phenergan into the machine before I can say anything and IMMEDIATELY, I start to get drowsy. Hmm I wonder.

"Was that the Phenergan?"
"Yes, you said you were nauseated?"
"Yes, but does it make you drowsy?"
"Of course! Phenergan always makes people drowsy its an antihistimine."

My speech slurs, my vision dims and its lights out. But not for long. Now something's going on with all my lower extremeties. I can't stop twitching or moving and Restless Leg Syndrome is in full force. I'm crying, and upset and basically going crazy. The nurse decides to cut the treatment time and send me home (still drowsy mind you). And I spend a lovely afternoon in the parking lot of the clinic, sleeping the Phenegran off. It took an entire day for that stuff to get out of my system and I not only lost a day of treatment, I had to wait another day and a half to have an emergency run.

Next time I feel nauseated? I'm bringin' crackers.

The New feels like the old

2009-05-15T10:07:00.001-07:00

   One positive thing about this new schedule, is that I can go home and its still daylight. Three years of evening dialysis and I've forgotten what its like to go home earlier in the day. Had a new tech today. New being that I've never met her yet. But she's been at the clinic for some time just not on my old days. First stick was a bust and I'm glad she's not an 'explorer'. Thats means she doesn't dig the needle around to find a good spot. There was a flash, but we couldn't get any blood to come out and then it dawned on me that that particular spot was trouble anyway because of a curve AND dip in the vein.
   My bad.
   So I said its okay to take it out and try to find a better place. And she did, without any meddling and I'm glad. Something I've learned being a chronically ill patient, you can never be too vocal about your healthcare. Forget if you're labeled 'difficult'. Its my body!!!
   Anyways, everything else went smoothly. I need to stop weighing with my jacket on, and keys, and cell phone, and maybe shoes too. I keep coming off the machine lower than projected and its maddening for the techs (hee hee).  Thank you for praying again. God is wonderful and good and kind.

TTS- Welcome to a new schedule!

2009-05-13T21:57:00.001-07:00

And so, the new week has begun and so far, I am digging the fact that I am home before the sun sets. My body is actually adjusting to dialysis being earlier in the day and by that I mean, that it is used to being 'cleaned' out at a certain time of day or in this case how many hours past has my body been dialized. I think I mentioned before that a normal person's kidney's dialyzes or filters the blood completely every 12 hours. Can you imagine how a person feels if he had to wait 24-48 hours for his/her blood to be cleaned out? Imagine the toxins building and damaging tissues and nerves and such.
Well, now you know how I feel lol. I won't go into all the chemical imbalances that such a treatment can place on normal functions of the body. It will be a while I'm thinking before I get used to a 'day' schedule. I'm used to going straight to bed after a treatment, but now I've got an entire afternoon and evening before I can hit the hay. Mmmmm, hay, I mean, sleep. Until the next treatment!

Skipped all of April

2009-05-08T23:59:00.000-07:00

Pardon me. April was a bit of a bust as far as blogging is concerned. Well, I highly doubt that this blog will ever amount to much . It is here for my personal ventilations regarding dialysis. I do not keep a written or an electronic journal of any sort (aside from this). At least I know that my entries will be saved on some far off server somewhere in North America and NOT on my 5 year old Dell PC.
Which by the way for as long as we've owned it, has been a workhorse. I'm pleasantly surprised that it has lasted this long. We vacuum it every other month or use a leaf blower (I kid you not) to blast the dust out.
Today, I made a change to my run schedule. For the past month I've been skipping Friday nights and running on Saturday late mornings. I noticed that it helped tremendously with my energy level on Sundays and Mondays (days when I am most active). Usually by the time Sunday rolls around, I am groggy, tired and miserable. I won't even mention how I feel on Monday mornings. I usually have to wait the whole day (on Mondays) before I can get to the clinic anyway.
We'll see how this schedule works out. Had to procure a babysitter on the other days when DH is at work. Its nice to be able to be at home during the evenings. DH and DC are all here, and we can enjoy din-din together. I've missed it. We usually have family dinners on Thursday, Saturday and Tuesdays (if we get home early from church). But other than that one of us was always missing. Hopefully this will liven things up a bit around here.
And MIRACLE of miracles! I received my approval letter for Kidney Transplant last week!!!!! HALLELUJAH:) I'm technically on the waiting list but on a hold status. As soon as my dental is cleared and I see the Transplant surgeon, I should be getting my pager and/or cell phone...is what they're telling me. Which means, no traveling out of town for a while!!! Hey, for something like this, I think I can make the sacrifice huh?
The house is about 80% decluttered and simplified. Not that I'm worried, but not having to think about cleaning and decluttering when I'm trying to go back and forth to the hospital, will help immensely. It'll help the kids no doubt, they'll know where everything is and I won't look like a headless chicken running around trying to find, whatever needs finding.
Thank you all so much, for your prayers by the way. God hears, and He truly, really, honestly, whole-heartedley (sp?) answers!! HE REALLY DOES! I've been trying to get on the Waiting list for 6 years. Enduring this long can only mean one thing. God is Working! Please continue to keep us in your prayers. And may I ask this one thing. When you do pray, pray that God's will would be done concerning my health. I want to do whatever He leads me to do. So far, He has opened the door for transplant, and so I am going to walk through it, by faith.
FYI- Having a kidney transplant is not a cure for Kidney Failure. It is just another form of dialysis albiet it is an organ, (and for that matter, all kidneys 'dialyize'). There are risks involved for both the donor (if living) and the recipient. There are medications that can have ICKY side effects. And the cost of the medications are PHENOMENAL... However, a kidney transplant is always a better treatment option than traditional dialysis.
Okay, starting to sound like a brochure now.

The ins and outs

2009-03-26T00:06:00.000-07:00

Dialysis is part of my vocabulary now. Words like hematocrit, phosphorous, and creatnine. Abbreviations like, KT/V, EPO. My husband and children are wonderful. They often see me at what I think is my worst. I can count on them for support. But there are times when I feel like its not fair to them to have a sick parent/spouse. They always remind me though, that they love me and want to help. I guess my pride won't allow it sometimes hehe. My mother, sister and brothers have been wonderful also. They help with childcare a lot and I am very thankful. I don't know maybe its hormones (or lack there-of) thats talking here.
All I know is that, God, has been so merciful to me. Did you know that a person with End Stage Renal Disease or Kidney Failure, who opts to NOT have some kind of dialysis, has at the most 14 days to live? Did you know, that every time a kidney patient goes on diaylsis, he or she is basically on a life-saving treatment and even then, the risks are substantial? I face this every time I get in my van and drive away from my home. The talks I've had with Jesus, usually sound like, "Oh Lord, I have to go, I know. I don't want to be away from home. I hate needles. But Lord, you blessed man-kind with the knowledge to develop this thing. You made a way. Help me to walk in it, even when I don't want to."
That may sound all elementary, but pain, I've found, causes me to do and say some strange things. One day at a time. With each breath comes a 'Thank You Jesus'. I ask myself constantly, "Self, why are you putting your poor body through this??"
I honestly believe it is because it is the right thing to do. "You hear that, Self?"

Alternative to cream?

2009-03-05T01:15:00.001-08:00

Is there one? lately there's been one spot on my arm where the skin over my fistula is getting thinner. The tech tonight sort of warned be about using the cream in that area. Or at least she suggested that I not put any on there for a while. Great. That leaves just a few more places to put the needles at. I'm SO ready to start working on transplant. Its not even funny.

Feb 25th 2009

2009-02-25T13:17:00.000-08:00

Found out why my BP's been acting weird. Apparently my hematocrit dropped the past 3 weeks and the nurse has been fiddling with my EPO. So normal points would be at 36 and right now its at 31. And its hard to take off all the fluid if my BP is too low. Ah, well. Tonight is gonna be interesting. We shall see. Waiting for the new insurance cards to come in. Looking forward to working with the transplant people again and I'm sure they'll be happy to know that I have solid medical insurance. The past 2 years since I started has been slow going. Thankful that we can begin again.

Over the midweek hump

2009-02-19T13:10:00.001-08:00

It's Thursday. Didn't take off that much fluid last night. For some reason, my blood pressure bottomed out in the middle of treatment and I hadn't even taken off half the amount of my goal. Weird. Could it be I mis-judged my going on weight? Could it have been the mass amount of ceviche I consumed during the first hour? Who knows. All I know is, it was wednesday and not an overly big deal.
Friday will be a different day. Gonna try not to eat anythingor at least not during treatment. Probably eat dinner before i leave anyway. Still waiting for medical insurance to send me my cards so that I can begin the transplant process again. However there is the issue of only having one car in the family.
Lord?

FDA warns agains EMLA etc..

2009-02-08T23:31:00.000-08:00

Check out this link at the FDA website. Apparently skin numbing products can be bad for certain individuals. Our clinic just had an overhaul of policies regarding lidocaine cream. We're not supposed to use plastic wrap any more and instead use gauze. And seeing that gauze will not protect your clothing from getting shmeared, they ask that you use the packet that the gauze came in , to cover the area. Plastic wrap doesn't allow your skin to breath and can increase your body temp in that particular area, which is bad, apparently.
There have been reported cases of patients having irregular heartbeats, cardiac arrest, difficulty breathing and worse.
I usually leave the cream on an hour before treatment and in the open air. I only seal the area with a small taped portion of plastic wrap and only when I'm leaving do I even tape it on. I totally understand the concern. So far the clinic that I go to does not mandate the policy. For now it is just a suggestion.
I know one thing though. If the FDA decides to pull EMLA off the shelves, I'll have to change the name of this blog. SHEESH.

January 28, 2009

2009-01-28T23:54:00.000-08:00

Doesn't that look funny up there with the double dates? I have no title for this entry, obviously. Came in late today. As in, 1 hour late. And I was hoping i didn't gain too much fluid. Got about 3.5 kilos off again. I think I'm gonna have to cut down on the coffee. Maybe 1 cup a day WILL be enough...
I see you laughing there in your cubicle or whatever hole you call work. Something to think about... can you make money on dialysis?
Saw a bit of news and got a gazillion calls from the kids. They really like the idea of mom as close as a press of a button. Something fishy about that let me tell ya. Isn't it awful how the economy's going to the dogs? Its even affecting my clinic! There is a low patient census right now, so to tighten things up a bit, they've changed everyone's schedule. This way, the techs and nurses can go home 15 minutes earlier.
Wow. That 15 minutes MUST have been expensive.

Monday Jan. 26, 2009

2009-01-28T00:13:00.000-08:00

We begin another week of treatments. I haven't kept a log or journal for each day I've been on dialysis. I should. Oh well.
Had a very 'full' weekend. I gained way too much fluid. Trying to aim for 3 kilos or under...I know I know the goal should be like 1.5 kilos. Its not healthy I admit. And it doesn't help that I've been asking for sodium baths too. Not good for the heart. Yes, that is bugging me a bit there. So preaching to the choir here, I need to control my fluid.
Started taking Sensipar again. For some reason, it makes me drowsy and nauseous. My doc suggested Prilosec. Unfortunately, Medicare D won't cover it because it is an OTC. Bummer. Still though, 40 dollars versus a nauseated tummy??? I'll take a part-time job tyvm!
Straightening out the insurance issues. Going to get on hub's Military benefits, yay! Is it me or does your brain get fried as ESRD progresses? I can't remember a thing lately! I've resorted to playing Brain Age just to keep up.

Tomorrow's Wednesday. Top Chef, ice chips, cozy socks.

What's a dashboard anyway?

2009-01-22T01:03:00.001-08:00

Hmm. I searched and searched and I think blogger is the easiest blogging service out there. I'm still figuring out what in tarnation is a dashboard for cryin out loud.

Its been a while from the last post. Had to get my fistula roto-rootered at the hospital back in, oh ya...october.. that went well. Scary moment. Talk about life line, they (meaning the doctors) don't do enough to prepare you mentally for being on dialysis. I think I had like 3 nervous breakdowns in a span of 10 minutes. Enough to last me for a year at least.

Had another angioplasty at the same time. Thats when your pipes (veins/arteries) narrow and they dialate (your pipes) with a little balloon. WITHOUT anesthetics I might add...i'm so fly. God was surely there...in the operating room....and I truly believe that....you would too if you had to endure 1000000000 pounds of pressure in your chest!

So like I said, treatments have been going rather well. One complain tonight tho......if you're a tech reading this..WATCH WHERE U SPLASH YOUR BLEACHED SOAKED HANDS !!!!

I have this coat that's been in my life for 10 plus years and its my favorite.. well, it now joins the dozens of clothing items that I've worn to dialysis, that can categorically be filed under, clothes that have been RUINED by clumsy, bleach splashing dialysis techs...

Heads up..

2008-10-18T13:04:00.000-07:00

So, last night's run went well. I've been trying to get them to do a crit-line for a week now. Its sort of a test to see how much fluid remains in your blood during dialysis.

Didn't do too bad, well actually I've been getting off a little bit too low (or under) my dry weight. Which means whatever I came off last night IS IT!

Went home and didn't feel much like eating. Just wanted to hit the hay. Woke up in the middle of the night feeling weirdish.

Woke up again at around 4am, on my fistula arm! And bad news, it was numbish, like there was no blood flowing through the entire length of the arm. Felt for the 'thrill' (that buzzing feeling near the beginning of a fistula) and yes, it was still there.

Woke up again (notice, the waking pattern here) AND uh oh......NO THRILL! BAD bad bad news. Panic ensues, and I dial the on-call doctor at 5am! She finally calls back and she sounds.....upset. This is the first time this has ever happened to me. Feeling for the 'thrill' is such an ingrained part of being a dialysis patient, so when its not there, well....I totally freaked out.

Doc said to go back to sleep and call the clinic when they opened to arrange a de-clotting appointment at a nearby "Roto-Rooter" type place for people like me. And since its Saturday, its hard to get a hold of anyone. Davita told me not to eat anything for now (and thats quite a feat seeing that I haven't eaten since yesterday's lunch!).

Now that I remember, I think I slept on my arm without even realizing it! I know this happens all the time to dialysis patients, but I've read about some fistulas not clotting for like 20 years and more! Needless to say, I'm a bit peeved and disappointed in myself for letting this happen.

I've said that dialysis is a gift. It still is. God is still on the throne, I'm still alive. They say that your access (fistula, graft, permcath etc) is your lifeline. I agree that it is, (prepare for the 'buts').

My physical body needs this fistula to live. Yet I am reminded that Jesus is the lifeline that I can always depend on.

How I ended up on dialysis

2008-10-17T12:38:00.000-07:00

*****This post is taken from my myspace page (YES i have one ok??)*****

Thursday, August 10, 2006
Catching up.....
Oh man where do I begin... ok guys.. I'm still sick... yeah. Don't get all depressed, I'm still alive and God is helping me fight this thing.. For those who don't know here's a bit of catching up.
In September of 2003 I made a doctor's appointment for a yearly physical exam. They usually do bloodwork and that sort if thing. A few days later, the doc calls me at home to come in ASAP. So, I go.
Prior to this, that year I had lost an astonishing 40 pounds in 6 months which was nice at first, but the nausea, lack of appetite, weakness, loss of color in my skin, just didn't seem normal. I mean, I practically died everytime I had to get up to even use the bathroom I was THAT weak.
Fast forward to the appointment. Well it wasn't good news. By some miracle I was still alive, but my kidney's were at a 9% functioning rate. And ladies and gents, that meant, they were failing.
To make a long story short, I have been on dialysis for about 3 years this coming September. It hasn't been easy and there has been a lot of changes, frustrations, fears, and all of what comes with facing sickness and yes even death. However, and this may sound like total complete nonsense, but through it all, God has been faithful to me. If there was any doubt that He exists, its gone. Because I am still here, still kickin, still alive. I'll end with a quote from my doctor that night he told me that my life would not be the same. He said, "You should be dead."
WHEW, swallow that one will ya?????

Everyday is a gift...

2008-10-17T11:57:00.000-07:00

It's Friday yay!

That means no looking at the clock and fretting for 2 days. It means I can relax and enjoy the weekend. Thanking the good Lord that I've made it through another week of dialysis. Everyday is a precious gift from Him, a reminder of His grace and mercy.

There are no 'buts' or 'howevers' in this post. No, not today. Today, I will remember that dialysis is a gift. I will remember the people, the professionals who make all of it possible. They're unsung heroes, and I thank God for them.

Fridays are special in my house, because of Saturdays and Sundays. Saturdays and Sundays is when Mom, is....well Mom. She makes lovely meals, takes her kids out, cleans like a normal mom, none of this "stuff everything under the rug" business. Days where she can play dress up with her girls, play video games with her son, and chase her husband around the kitchen.

Fridays remind me that God has brought me through yet another 2 treatments without any major damage or incident. For any patient who has a 3 a week schedule, either TTS (Tuesday, Thursday, Friday) or MWF, the third one, the last one, before the 2 day break, is always the happiest one.

And we always hope that we take off more fluid than usual. We try not to take in too much the day before. We try to be good patients on that last day. And the techs notice. The nurses accomodate. The patients are all smiling and giddy.

Fridays (or Saturdays) are special, yes indeed.

But EVERYDAY, is a gift from God.

5 years, 42 days

2008-10-17T11:35:00.000-07:00

Hello:)

This blog is for keeping track of the ups and downs of life on dialysis. Hence the craziness over there (<--).

If you are reading this, you're probably a family member, friend (or foe), an acquaintance, or just navigated here via google or other search engine. Whomever you are, thank you for visiting.