I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: CebuShan on September 15, 2011, 08:09:51 AM
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I have been on dialysis for over a year. Everyone keeps telling me that I would probably be a good candidate for a transplant. I have contacted the transplant center twice. Both times they sent me the papers with the lists of everything I need to get done. I have done some of them but not all. I keep thinking: Is it really worth it? There is so much uncertainty. IF the center thinks I'm a good candidate. IF I get on the list. IF a suitable donor is found. IF I don't take a turn for the worst before a donor is found. IF the transplant works. IF, IF, IF, ...Just so many unknowns! I was wondering if it might be better to stick with the certainty of dialysis? At least I know what to expect. I'm not going to be turned down, etc. How much more of a burden on my husband will I be until I recuperate? How much would I be able to do? Right now I can take care of myself, we couldn't afford for him to take time off of work. We have no family close by to help and I wouldn't want to bother friends with our problems. Besides, they have lives of their own.
Sorry, I guess I'm just having a bad day. I'll blame it on the crappy weather.
:thx; for listening!
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I just got listed and I think it'll be worth the effort. I didn't find the list of items to be taxing, but maybe my situation is different and my to-do list might have been shorter than yours. Everyone's situation is different. I don't think I'd be happy on dialysis. I won't like the medication hassles of transplant, either, but for me, I think the medication hassles will be less annoying than dialysis hassles.
I undestand your post-surgery care dilema. It sounds like I'll need help for at least a couple of weeks for up to a month after transplant and this will be a challenge. I'm single and my family is halfway across the country. I hope one of them will be willing to come out and stay with me for a couple of weeks, but I don't know right now if that'll happen. I figure this is a short-term problem. I'll find a solution and my care needs won't be forever. I know I'll be back on my feet and independent again shortly after surgery.
The important thing for you to make peace with the solution that's right for you, whatever that is.
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We're all different but from my own personal and pretty extensive experience with both dialysis (close to 6 years total) and transplant ( 2 transplants 25 + years total and counting) my life with a transplant is transformed...radically, dramatically, energetically etc. No guarantees of course and we jump one hurdle after the next but this is true of life in general, whether it's worth getting more education or having children or ...or....or.
The main thing is, no one can say what's right for you. Good luck with deciding what you will do. :cuddle;
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You have asked about a lot of issues and here are my two cents. If you follow this area of the site it appears you have to jump threw many hoops to get listed and it is very stressful and time consuming. Well here is my answer to that assumption, yes it is very true, it is time consuming and stressful and worst of all you feel that your life is being determined by some arbitrary group of people and that you hardly have any say at all. To that end I would say to not let that scare you or anyone else from pursuing a transplant. It is similar to anything else in life that has a big reward, it takes a ton of time and patience and perseverance. Anyone who has saved up to buy a dream house or starting their own business or getting a degree to work in a field they have a passion for has had to get through a ton of obstacles.
Before I get to the part of recovery I want to give you my background so you can judge my experience properly. I was underweight for my size because I followed the low protein thing very seriously and I had no other major health problems. I am in my late thirties and my health problems were high blood pressure and a penchant to get sick very easily. I have asthma and allergies and some arthritis which are caused by some autoimmune problems. The reason I want to give you my background is so you can judge this next statement properly. The recovery from my transplant was simple and not complicated. In the hospital for less than a week and after discharge for one month I had to go to the doc for two times a week. This is where your husband would have to drive you and get involved. I live by myself and did not need any help with my household stuff at all. I had someone help me get to the doctors office and pick up some groceries.
Now can the transplant go bad? Yes it could and there could be a multitude of problems. My point with the above paragraph is that if you are someone who does not have a ton of other health problems you probably have a good chance of a smooth transplant. What I see on here and other boards is that a good amount of people who have a ton of stuff go wrong already have a ton of other major health problems and therefore the risk of complications is exponentially higher. With all that being said it DOES NOT MEAN that all people who have other health problems are going to have a ton of complications.
The next thing is do you enjoy your quality of life right now? With the transplant I have no food restrictions. Everyone knows that food is energy and especially protein. For myself it is night and day with the energy levels because I can now take in protein throughout the day.
Many will say with the transplant you are high risk for cancer and ending up in the hospital or dead from some obscure infection. Here is my take, I want to get the most out of today and I don't want my kidney disease to kill me. If cancer takes me out or some infection than so be it, at least I had a good run being as close as I could be to a normal average adult with minimal restrictions on my life.
All I know is the two years before transplant I was weak and frail and so tired that everyday was a chore. I am extremely independent and I could barely mow my lawn or just do maintenance on my house. After transplant I have put on over fifty pounds and I can do what I want when I want and most importantly I don't feel weak anymore.
Don't let fear hold you back IF you are scared, take a chance and go for it. Fear is a great human emotion because it can often times keep us safe, but it can also at times hold us back and limit our potential.
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Two years after my transplant, I'm still dealing with the multiple, at times life-threatening, complications I had. I've had multiple surgeries, an open wound for over a year, a skin graft to cover it, and finally, a massive hernia that left me with about a liter's worth of visible intestines under the skin graft. I'm still in pain from the last surgery (to put my guts back on the inside) at times. I've no longer got a belly button thanks to the surgical repairs. Because of the hernia, I'll never be able to lift more than 25 pounds at a time for the rest of my life. The prednisone has done strange things to my figure, my hair, and my personality.
But I'd sign that consent form for surgery and do it all over again in a heart beat. Compared to how I felt on D, I've got more energy, more freedom, more options. I'm back at school, planning on going back to work, and enjoying every energetic minute.
It's still a personal decision, though. Not everyone wants to take the risk. If you don't, that's okay, too. One thing to keep in mind - if you do jump through the hoops, get listed, and get called - you can still say no.
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It is very personal. I still had traveling to do, things to get done, my "to do" list was no where near finished. I got discouraged, frustrated and defeated --- BUT, for me, it was completely worth it. I guess I was so use to feeling bad, I had forgotten what "good" was anymore. I sure do now! Recovery was not that bad for me. My husband took a couple of days off, but I was ready for him to go back to work. He made sure there was plenty to drink, little snack packs of fruit, applesauce, etc in easy reach. The thought of falling was my only worry. Don't life thinks, walk a lot when someone is with you, and rest/sleep. My d in law is a nurse and she kept telling me that the body needs sleep to heal. Lots of water and lots of sleep. :2thumbsup; I think if you plan ahead, your husband won't miss much work and you will do fine. I know they say 2 weeks, 2 months -- whatever is the current thought. You know your body better than anyone.
Jbeany is our "little engine that could" ! No matter what has been thrown at her, she has dealt with it and has always been upbeat and positve. She gives us all great encouragement.
Do what ever makes you comfortable and happy. There are many here that do not want a transplant. And they are good with their decision. Let us know. As Jbeany said, you can always say no. Even if you're called, waiting to be prepped, you can stop the whole thing. You are in control. Good luck with the decision.
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I've had both done, transplant and dialysis (both forms too).
I see it as a no win situation. If the transplant works and you get minor hiccups, then yes, it is well worth jumping thru the hoops. If you get the transplant and you get endless complications, then I'm not sure if the transplant or dialysis would be better. When I received my first transplant, I had endless complications. Anti rejection episode (more than once), then spending a week on the hospital (this happened 2-3 times), and then finally receiving notice that the transplanted kidney gave up the ghost (6 months later). What a disappointment and letdown. I did make it 3 years after the notice, but in that time it was pins and needles. Unfortunately, you won't know if you'll get complications until you go thru the transplant. I know others who've received transplants and it has worked out extremely well for them.
But being on dialysis is no fun either. It is time consuming and alot of work (setup of the machine, room in the house for supplies, maintenace of the tanks/machine, numerous hospital visits for button hole development and bloodwork).
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:thx; Everybody! I guess what I really needed was a god cry. :lol; and your messages did just that but in a good way. What a relief to hear stories of the good and the bad, no holds barred! Thanks for understanding. I do feelencouraged enough to at least take another serious look at my options.
:thx; again, everyone! I'll let you all know what I decide.
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:thx; Everybody! I guess what I really needed was a god cry. :lol; and your messages did just that but in a good way. What a relief to hear stories of the good and the bad, no holds barred! Thanks for understanding. I do feelencouraged enough to at least take another serious look at my options.
:thx; again, everyone! I'll let you all know what I decide.
if it is worth anything, despite all the setbacks plus a failed transplant in 3 years, I'm back on the list and willing to do it all over again. Hope that helps !
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Okay . so it is a grueling process full of appointments and disapointments . The staffs at most transplant centers are wonderful at helping you cope.
You will not gp thru it alone, I have been transplanted since 1999 and have had a few setbacks but in the long run would I do it agaon .
TES I WOULD,
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yes its worth the trouble...... Get on the list ..... you can always fall back on dialysis.....
I agree with every thing that everyone else said..... but I have only had a transplant for 12 days....dialysis for two years.... some of these guys are pros on the subject....
Do what you feel is right for you ....but my two cents.... is get on the list...... LOL
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There are far to many IFs in this life for my liking, but there you go.
You've been on D for a year, so it's the devil you know...so far. But you know that long-term dialysis has its own risks, especially if you are dialyzing thrice weekly in a clinic. In another two years' time, will you be as content as you are today, or will you be thoroughly fed up?
Is there a reason you think you would not be an acceptable candidate? Some ifs are more plausible than others. If you are in reasonably good shape despite your renal failure, then I agree with the rest that you should at least attempt to get on the list. That way, while you are still pondering all of the ifs involved, you'll at least be accruing time.
And as others have said, if you do get on the list and a kidney does become available to you, you can always say "no".
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I was fortunate enough to transplant without ever having to do D, but I didn't feel the pretesting was trouble at all. Super easy. A little time consuming, but easy. And my recovery was a breeze. My advice: get on the list. When the time comes hopefully you will be ready to accept the gift. :cuddle;
Now having said all that, your feelings are valid. Explore them and do some research. I'll be glad to share my story with you if you are interested. :)
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I'd think a transplant would be better but it's a personal decision.
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Do what's best for you and what you feel good about.
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In my opinion it is absolutely worth the hoops you have to jump through to get on the list. I was on hemo for a year and didn't fare that well. I felt so much better after transplant even though I did have problems with it too. I still felt much better. And if you believe the stats, your life expectancy will be much greater even with the potential side effects of the anti rejection meds. I know I can do dialysis again, but I will only do it if I can be listed again for another kidney transplant.
Cora
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we're waiting any day now for a surgery date with our living donor. the criteria is easier when your not in/out the hospital or even not on D yet. some days i say its all worth it. some days i want to scream with frustration.
and i'm not even the patient! i do wonder what advancements we might see over the next few years. could be something comes along while your waiting? lets all hope so.
i was reading about a young woman who had BMT with stem cells to correct her kidney failure. i've also read its pretty serious and risky. otherwise they'd be doing it on everyone.
i hope to report back here soon that DH got the transplant and he and the donor are recovering well with no issues. kind of like labor/childbirth if i can say that and not offend anyone. full of pain for some but the first look into that little babys eyes make it all worth it.
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Even though my transplant was preemptive and I was the ideal candidate (no other health issues), my almost six month old transplant and recovery have been anything but smooth-sailing. I almost died two days after the transplant because of an adverse reaction to Tarcro/Prograf, had to have Plasmapherisis treaments for that. I ended up in the hospital for five days this summer for an unknown infection. I am now battling an episode of cellular rejection that I am hoping will resolve itself without too much damage being done. My creatinine is not stable and I get dehydrated very easily. I have also been pricked and poked for multiple I.V's and blooddraws (and one chest cath) at least 150 times in the past 6 or 7 months...
BUT, it's gotta be better than being cannulated with 15 guage needles three times a week! The seven I.V. needles I got stuck with this week were 24 guage and they just about sent me over the edge... HD would land me in the psych-ward :stressed;
You can always turn down a transplant offer. Get on the list so you have options!
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i didnt really read what everyone else has to say but im putting in my :twocents;
i have been on d since 07, i was told id never qualify for tx, so i never really tried, I began d at a davita clinic, for 2 years i was miserable, and eventually stopped going all together, stupid i know, but i couldnt handle it. when i got admitted into the hospital, i adored the people who dialysed me, they were great, so i made a decision to transfer to the clinic i now attend, SO much better! unbelievably better.... it meant i had to uproot my son and i, and move out of the house that i own, and rent a place. but i had to, to live...
I thought, well, this isnt as bad as it had been, it still sucks, and alot of times i feel icky, but i dont wait for death now.
anywho, then i began losing weight, 100 lbs gone, and my dr says, why havent u tried for tx yet?? *my dr is a dipshit*
So, i made a few appointments, one in Indy, one in illinois, (and i am trying to pick my 3rd) I went and did all the stuff they wanted.
Indy ended up telling me no, BUT illinois has me listed as inactive, until oct... then i will be active, have to have a hysterectomy...
All that being said,
I dont know what the outcome will be, i dont even know if ill find a donor, BUT i figure i should try, for my son, for my future. even though there are many frightening and crrappy situtations that "could" happen, and the fact buffets arent exactly safe... my family loves their buffets... im still going to try.
its ultimately up to u of course, but whats the harm in seeing what a center has to say?
good luck! :cuddle;
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As usual, there has been some really great advice here, beginning with you have to decide whats best for you. For me, I'm 18 months post transplant and I wouldn't trade those 18 months for a hundred years of dialysis If things started going south tomorrow, I would still say that. I highly reccomend you at least put yourself in position to make the choice
Good luck
Ed
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Hands Down, get the transplant. There are alot of patients wishiing they could be listed, but cant. If you are eligible, DO IT. It is the closet thing to normal living than what you will ever get with Dialysis.
lmunchkin
:kickstart;
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:thx; everybody. I really appreciate all the comments. I am going to contact the center again. I don't have to think too hard to remember the tx coordinator's name, she has the same last name as me! I think I will go to Univ. of Wisc @ Madison. Anybody have any experience with that hospital?
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Cebu - I'll add my two cents here.
First of all I do agree with everyone else that it's a very personal decision - everyone's situation is different and there's no "right" answer I reckon. It's a choice between treatment options.
Having said that, and with the perspective of 4.5 years of D and nearly 10 months of transplant under my belt I will offer these thoughts.
For me, it was not really a hard decision to make. I'm 40 - despite the grey hair and lack of a love life I'm still pretty young and have no real other medical concerns apart from eyesight which has been an ongoing thing since birth. I work and enjoy that, and heavens I enjoy living life as much as I can - both while on D and now since transplant.
So why was the choice easy for me?
Yes, there's so many IF's involved, but by the same token there's so many IF's involved with staying on dialysis also. What I mean is that while you can be very stable on dialysis and go for decades (there's living proof on this very site) by the same token bad things/complications can happen to those on D. Infections, stuff like secondaryhyperparathyroidism/brittle bones etc, high K leading to heart issues, etc etc etc. I'm not writing that to try to scare anbyone on D - it's just a fact - that there's a (small) chance that things can go bad. Just as with transplant.
When I got "the call" they took me down to the OR and told me that they weren't sure if the kidney was ina good enough state for tx (I think it came from a car accident). and that they may well not perform the op if they didn't think it would work out. I trusted them. AT that point I even still felt that the option of life without dialysis, even if it was for a short time, would be better (for me personally anyway) than being on D. Not that I had a horrible time on dialysis - far from it - my nurses used to call me a "model patient" - I used to control fluids pretty well, my labs were all good, and I had got to a stable state where I crashed or cramped rarely.
Now, I am nearly 10 months in, and yes had a few ups and downs, but mostly ups. I have just returned from a trip to Seattle and Vancouver - that's something I could not have done while I was on D - 24ish hours of travel to get there and so on. And, I had the freedom to not only not have to worry about D, or fluids or stuff, but I could eat whatever I wanted (helllooooo tiramisu & cream!!!), enjoy a beer while eating chowder by the beach and other fun things. I love to travel and do those sorts of things. My wonderful gift, so far, has allowed me these experiences.
And I honestly feel that if my tx failed tomorrow it's still been worth it for the last 10 months. Hopefully not, but I am aware enough that anything can happen - just the same as it could have while I was on D.
As someone noted it's almost a no win situation because whichever choice you make there are risks, pros and cons. It's up to each person to decide which outweighs the other, or as a dear friend of mine might say - which gives the better 'bang for buck'
Sure, getting tested involves lots of tests, time etc.. but they do this to ensure things have the best chance of working out - and that's what we all want. After it's done and you're on the list then it's done, and who knows.. when that call comes.. it could change everything.
Again your choicem, but I personally feel it is definitely worth it. And yes, I would have said that a year ago when I had no idea when (or if) my transplant would be.
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i hear WI has a fast wait list, ive been thinking of trying there as well!
GOOD LUCK!
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:thx; everybody. I really appreciate all the comments. I am going to contact the center again. I don't have to think too hard to remember the tx coordinator's name, she has the same last name as me! I think I will go to Univ. of Wisc @ Madison. Anybody have any experience with that hospital?
Ah, yeah, over here! :waving; None of it has been positive, though. I know that wait makes it look attractive, but I would not be able to trust them with my life. I really wouldn't. Nor could I trust Froedtert, and Aurora knows my feelings about them and their program that has not even been in existence for a decade. Those are your three Wisconsin options. Consequently, I was transplanted in Chicago....
The only person I know outside of this site that went to Wisconsin lost her kidney (from her husband) within a year. I don't fully know the details, but from what I was told, they gave her prednisone when they should have known that she cannot take that drug. They did lose their Medicare certification recently, I assume they got it back. I believe Bette went to Madison if you want to look through her posts, and I think she's been happy with them on balance. To me, they were so rude and so incompetent, and I was told that doctors could not speak to me by phone because they were just too busy. Really? What is this busy that you talk about? I could not possibly have imagined being in school full-time, working part-time, with a husband who had to travel to Europe or Japan every few months, and a child under two....
I ditched them in 2006 after a wretched conversation with Dr. JP, an arrogant cretin who kept snapping his gum while telling me that I would die if I went through a clinical trial that I had my heart set on. I went through that trial 18 months ago. If you do go to Madison, give them one of these :sir ken; from me. (Yeah, it's been five years and I still feel the rage every time Madison is mentioned. Perhaps I should look into some meditation or something.... Heh.)
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Wow! Thanks for the info, Cariad. I'll do a little more digging. For the record, I tried Loyola for care but they were not what I expected. I had seen the dr. and was told that they would like to try putting a stent to my 1 functioning kidney to see if it might improve. We got home & got a call that they had an opening & to come back to the hospital. No problem. We went back. Finally found where we needed to go (try getting directions from an employee there, what a joke!) & got checked in. We were told to sit in the waiting area & someone would come and take us to my room. This was about 8:30 pm. My husband & I both dozed off and at 10:00 pm, he woke and wondered why no one had come to get us. He went to ask the receptionist, who was shocked that we were still there! We asked if we could just go up there ourselves so the receptionist called up and got permission. We went to the floor & wing that we were told and they were surprised to see us. Yes, we were told, they had me down on the list but they didn't have my room ready yet. I was getting really tired and was ready to leave. They finally said my room was ready and had someone take us to it. Then they apologized for not having a BED for me! Sure enough, there was a couch in the corner but no bed! I flopped down on the couch & said, "Fine, I'll sleep here". :stressed; The CNA left to look for a bed and I'm arguing with my husband because I just had a bad feeling and I wanted to go home. He finally talked me into staying and they did find me a bed. I did really like the surgeon & followed up with him. BUT I had a nurse that barely spoke English (I think she spoke Portuguese but I'm not really sure since I speak 0% Portuese.) None of the languages that I speak a little of didn't work & I simply could not understand her accent. Usually I have no trouble with accents but this time... :banghead;
Also, I kept having interns coming into my room to "check" on me. Normally I wouldn't mind but none of them seemed to have a clue what they were doing. I found out later that they weren't supposed to check on me! That explains why what I thought were simple questions were always met with confusion. They would tell me that they would aswk & be right back but none of them ever returned! I finally called my neph at home and told him everything that was going on. Since I was to lay flat on my back after the surgery, I had my husband take my cell phone (with my neph still holding and find the person in charge on the floor. My neph talked to them & whatever he said, all of a sudden, my care improved. I got a nurse that spoke understandable English and the interns stopped making appearances. As I was packing my stuff to leave, a director of something came to my room to apologize for the screw-ups. I will give her credit for not trying to make any excuses for what happened but I did tell her that I wouldn't be back.
A few months later, a friend was sent up there for some tests (not kidney related) and had a similar experience!
Where I really wanted to go originally was Stanford in CA. When I lived in CA I had all of my major surgeries at Stanford. I love the staff there! From the Drs. on down to the cleaning staff. The biggest plus though, would be that I would have been close to my family. Unfortunately, my Mom is not doing too good right now and I wouldn't want her to feel pressured. So, I'll stay out here in the Midwest. :'( (I also think my husband was a little worried that I might not want to come back!)
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I just wanted to let you all know that I spoke again with the coordinator and we are going to get started. She asked if there was something with my health the reason that I didn't finish before. I told her no I had just gotten scared. she said she'd be worried about me if I wasn't scared. That made me feel a bit better.
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I went to Madison for both of my transplants and have been happy with my results and my care overall. My first transplant lasted 12 years and my I had my second transplant about 18 months. The main reason I went to madison both times was the wait time. I am o negative and I did not have a living donor. I was actually double listed both times at Chicago area centers and I got the call first for Madison
In my opinion, Madison's program is pretty good. They are a little crazy about having you come up there for aftercare for the life of your transplant. It's not a problem if things are running smoothly, but can be troublesome is you have a lot of issues with your transplant.
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Wow, bette1, another O neg! I had thought for a long time that since I am the universal donor, that I was also the universal recipient. Boy, was I surprised! My husband wants to donate but he's A pos. The coordinator said they could test my blood and his to gauge the reaction. If I don't react well, them we would go on the matched pairs list. That is assuming my husband is able to donate. I chose Madison not for the wait time but because it was consistently ranked in the top three hospitals for transplants.
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I had my transplant in Madison WI back in 1985, of course back then it was a three week stay in the hospital. I didn't have any problems with the staff or doctors, they were all very professional. I moved to another state so I haven't had any contact with them for over 7 years now but for years I had follow up appointments and never had any problems.
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Hi: I am new here and wanted to let you know that I had my transplant at UWH in Madison WI, Sept 5, 1985. I had a living related donor, my brother who was a perfect match. Back then, my hospital stay was 3 weeks. No matter how good you felt they wouldn't let you out until that 3 weeks was up. I have to say that I had a great experience at UWHM. The staff was friendly and helpful, but that was a long time ago, I now live in TN.
I had no problems for all those years but am now needing to go on the transplant list. I can relate! I don't know if I want to do it again either, not because I had any complications the first time, but a fear of the unknown with the meds and complications I may have with the 2nd transplant. I have been cleared to go on the list however they won't put me on because I don't have a support person. My husband passed in Feb from brain cancer. I also take care of my mother who has parkinsons and stage 4 demensia. I was also diagnosed with parkinsons a few months ago and knowing what is in store for me years down the road makes me wonder if I should even consider another transplant. To many descisions and to much confusion. I have read many posts and it has helped me sort through some of my issues.
Thanks for listening
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Welcome to IHD, Winefred! Glad you found us. Lots of support here and no sugar-coating! Good luck with your decision. Thanks for your feedback.
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Winefred, do you remember which UW-Mad nephrologist was following you? I do remember at least one nice one there. However, the refusal to spend 3 minutes on the phone with me cost me an entire day of my time, which included 5 hours of driving and a long wait at reception only to be told that they were not going to do the biopsy that I had gone down there for because they said my kidney was too old and scarred. Shortly after I vowed to never go back there, they lost their Medicare certification.
Anyhow, I seem to be the only one here who has had problems with Madison. I do tend to bring the dark side of doctors out for some reason, which is weird because I want to like them.
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I remember my surgeon was Dr Solinger. My follow ups were in my home town of Marshfield at the clinic there. When I went to Madison for checkups, I don't remember ever seeing a dr. It was always PA's that saw me. I guess because I never had any problems. I saw my Neph in Marshfield for about 5 years then they kicked me out of the Neph dept because I was to healthy and had to go to the internal medicine dept for labs and check ups.
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I only have 2 more tests left to get done! My GP has been wonderful in working with my neph to get all the tests ordered and keeping on me for procrastinating.