Transplants-how do you feel about them?


#1

After being on dialysis for 7 months and dealing with kidney disease for 13 years since I was 36 I am now about to embark on the long process of getting onto the transplant list here in Australia( which has one of the lowest organ donor rates in the Western world). I am probably looking at an average wait of around 5-7 years.

I have conflicting thoughts about getting a transplant and would like to know how others have coped with their decisions. I know everyone has their own personal battle and story to tell.

After getting through a nightmare couple of months starting dialysis I guess I am ready to face the future, but it is pretty scary. I have even turned the corner enough to be thinking that dialsis isn’t as bad as I thought! Having been on immuno suppressants and cortisoids for a number of years already to slow the progress of my disease down I have experienced some side efects like melanoma, skin cancers and early osteoporosis first hand. I have a friend who is clinging on to her transplanted kidney but it is a daily battle. I know with my disease (FSGS) the chance of it reoccuring in the transplanted kidney is real.

This doesn’t turn me off the thought of a good life without dialysis but makes me think twice about accepting a live family or friend donor. The mental stress and anguish that my husband and I have been through getting to this stage of dialysis has been intense. The thought of getting a kidney from someone I love and then possibly having it rejected would be hard to manage. Maybe I might mellow on this subject after a bit longer tied to my “washing machine”.

So I guess it is just a matter of waiting for that phone call for the next 7 years or so! (lol) In the mean time my experience of being “sick” for nearly 14 years has taught me to make the most out of each day and let tomorrow take care of itself.

Would love to hear how others are handling their situations. 8) :


#2

Hi Beachy

I just read your message. I want to reply, because I think you touch on some real and interesting issues here. I have to start setting up my own “washing machine” in a little while, but I hope to reply more tomorrow. I’ve been on the waiting list for over 3 years. Sometimes, especially when we’re doing this at home, we can feel very alone, even if we have a spouse or other relative around. It can be very useful to talk about these things with others who are in the same or similar situation.

Pierre


#3

Just 3 words…

GO FOR IT!

…there’s nothing else like having real kidneys inside of you…


#4

I have FSGS. I went straight to transplant in July 1988, didn’t even have a fistula or ANY knowledge of dialysis. Sure people had tried to talk to me but I knew the transplant would work. My brother was a great match, I was an otherwise healthy 25 year old, it was before the internet: dialysis never crossed my mind. By May of 1990 I had my fistula placed, September 22 I had my first treatment. Between May and September I rebuffed many attempts at education but once I started treatment they had me. They kept me at the Patient Education Unit until mid-December, it’s suppose to be a two to six week stint, at the time I was not a good student. Since then I’ve made some progress.

I could go on the list. Try again, but I choose to stay unlisted. It’s just my evaluation of my options; my calculus weighing the known with a promise. As far as worrying about what if it reoccurs I say go in with a positive attitude and clear-eyed. I think you shouldn’t rule out a living donor just be honest and open. If you decide you want to go for a transplant then let your donors make their own decisions , just explain FSGS – what we know today.

I choose to dialyze. There is nothing wrong with choosing dialysis. It’s your choice. With more frequent dialysis you can stay healthy for the advances that may be available in our future.


#5

Ha ha Gus. I think i get what you are saying, can you spell it out any clearer! :lol:

Bill, you sure have made some progress…right around the world!
Do you think the newer immuno suppressants or plasma exchanging would have prolonged the life of you donated kidney today? You are probably far more knowledgable than I am on this, I have only just begun to scratch the surface, is there any good sites which explain FSGS and rejection that you know of?
8)


#6

A little background just to set the stage…

I got myself on the transplant waiting list right away after I started dialysis 3-plus years ago. In Canada, or at least in my province, no matter when you get evaluated, time on the waiting list starts on the day you started dialysis, even if it’s retroactive. This makes it absolutely fair for everybody, although in some ways, it does penalize those who get on the waiting list promptly vs those who don’t bother until later on.

Now being on the waiting list can be an emotional roller coaster at times, and at other times, you just quietly hope to hear the phone ring. Every time that phone does ring, you can’t help but think this may be the time. Of course, it never is - but it just takes that one time.

During the first year, one of my brothers offered to donate a kidney. It took about 7 months to complete all the tests and interviews. During that time, I was on hold from the waiting list - because that’s the policy here when a potential recipient already on the waiting list is having a potential live donor tested (on the evidence that the live donor kidney would be so much better than a cadaver one). My brother is a perfect match, but he ended up being rejected at the very end, after the very last interview, 7-8 months later, so I became active on the list again (without having lost any waiting time on it, though). I can never know for sure. I’m not a complete idiot, so given the circumstances, no matter what plausible medical excuse they give, you can guess what I suspect happened (not uncommon either, as I know other people this happened to).

A couple of months later, I’m driving along going to the hospital for a support group meeting at 8am when my cellphone rings. It was a nurse telling me to head for the hospital because they might have a kidney for me. I get there, and I’m told that I’m second in line, but that because the guy ahead of me has a lot of antibodies, there is a better than 80% chance I will get the kidney. So they admit me to a hospital room, and then I go for the pre-transplant testing (blood test, EKG, chest X-ray, etc.). Apparently, crossmatching takes a few hours to complete, and so, by now, at 1pm, I’m still in the running for that kidney. Roundabout 3am, the nurse assigned to me starts thinking that maybe she should prepare me for the IV line used to infuse the big dose of steroids (because the actual surgery would be sometime after 6pm). The neph tells her to hold off for a while. At 5pm, neph comes in and tells me I’m not getting a kidney that day. So I go home empty-handed after spending the entire day in that hospital room.

At that time, I’m thinking, “Well, I got called as a backup, so it probably won’t be long before I get called as the primary”. Now I know better. That was November 2003 and it’s as close as I’ve gotten. Now it’s February 2006, and I’ve never heard from them again. This just shows how much actually getting a kidney from the waiting list is like winning a lottery. There’s a lot more to it than seniority on a list!

While I’ve known at least a couple of people on dialysis who chose not to be on the waiting list (one of them fairly young too) because they preferred not to deal with all the issues involved (usually it’s the drugs, but also what they refer to as the mind games of being on the waiting list), there was never any question in my case, even though the kidney disease which got me on dialysis can recur in the transplanted kidney.

After I moved on to home hemodialysis last year, I spent some time mentally re-evaluating the transplant thing. Daily nocturnal hemo is so much better than conventional hemo that one begins to wonder if it wouldn’t be just as well to stay on it. In some ways, I actually have less diet now than some transplant recipients. I mean look, I’m off all BP meds for the first time in two decades! Now, I’ve already been told that with my recurrable kidney disease, the transplant nephs will want me on at least an ACE inhibitor if I ever do get a kidney. I even went so far as to discuss it with my home hemo neph. She does recommend staying on the transplant list, of course. It’s important to realize that, while daily hemo improves lifestyle, there is still no good trial evidence that it reduces overall mortality.

In the end, this is how I see it…

Daily nocturnal hemo approaches the quality of life a transplant gives you, other than for the time needed to do the treatment almost every day. This is good, for now, while I can still do it. But things can happen, you know. A transplant is another treatment. I’m a person with ESRD, so, I will have times on dialysis, probably some time with a transplant, and maybe a return to dialysis at some point. I’m 52, and I might not always be healthy enough for a transplant in the future, as time goes by living as a person with high risk of developing cardiovascular disease. On hemodialysis, you can live a long time, but, you do run the risk of gradually running out of accesses, not to mention other potential problems. So, whatever time a kidney transplant gives me is time I will happily take as part of my inventory of available treatments.

I think everyone is at least a little afraid of the drugs. Sure, there are side effects, and potential risks (like increased risk of some cancers). But hey, we’re not exactly drug-free as dialysis patients either, what with heparin, epo, calcitriol (or similar), venofer, etc.

Personally, I have no pie in the sky illusions about transplants. I know things are not always rosy, having spent some time hospitalized a year ago on the same floor as transplant recipients being treated for infections and what not, and having known a number of transplant recipients on an ongoing basis. It’s just another treatment, but it’s one that on the whole would be beneficial for me. If my kidney disease recurs, so be it. This possibility is why after the experience with my brother, I decided to not accept any other potential live donor even if offered. I would rather be on dialysis and wait for a kidney on the waiting list. I’ve had the talks with the social workers, but, there’s no way I want to deal with the possibility of recurring disease having accepted someone else’s great gift of a live donor transplant.

Beachy, I can’t tell you what to do, of course, but getting the evaluation completed takes some time. I’m inclined to say you may as well get it done. For one thing, as part of the evaluation, you will have the chance to discuss the issues with the transplant neph and/or nurse, and probably the transplant social worker as well. There’s no law that says you have to accept a kidney later on if you don’t want to.

If there are still doubts, here’s more… every time you have to setup that washing machine, think what it would be like if you didn’t have to do that. No more worrying every time if the needles will go in easily that night, if the night will be plagues with alarms, etc. I know I will gratefully take whatever time I can get with a transplant.

Pierre


#7

It’s plain simple…the times have changed and transplantation has advanced and continues to do so…

I’ve had a transplant back in 1979…lasted almost 3 years…I ask the question, is transplants back in 1979 the same as today? Heck no! There are some new techniques and methods of transplanting kidneys…literally its better than before and continues to head that way…

Recently, they’ve discovered some patients not needing one single dose of anti-rejection drugs and Doctors are scrambling to find out why…they’re not sure why some patients don’t need anti-rejection medicine while others do, so they’re researching those patients that didn’t need anti-rejection drugs…they want to pass that benefit to other patients!

Is it all worth it? Yes! Complete freedom…its a bit hard to go through the process but at the end its wonderful! When things go out right the future is bright…


#8

Thanks guys!

I appreciate you honesty and openness. You have given me some real food for thought. Of course, I will give it a go. Who knows what might be out there. Even though it will no doubt be a long wait, it is a bit like a lottery. The person with the closest match in the whole of Australia gets the first chance at the donated organ and then it goes to the person on the waiting list in the organs particular state. My state seems to have the longest wait…

As for a family or friend donor nobody is exactly pleading with me to have one of theirs, however in the back of my mind I keep thinking if it was them that needed one, knowing what I have gone / am going through, I would probably do it for them tomorrow. ( I know I shouldn’t be thinking that!)

You guys have been through so much already. Makes my whinge about putting up with the disease for so long look like a walk in the park.

Gus, it is great that you still feel so positive about transplants. Are you on a waiting list? I don’t understand how the American system works?? Pierre, sounds like you are very close. What will we do on this forum once you get your kidney?

Just so I don’t scare anyone too much with talk of melanomas and other skin cancers. I have spent my whole life at the beach and lying around on surfboards for hours in the sun. The damage would have been done many years ago and really I would probably do it all again. The immuno suppression just brought things to a head. I am more careful obviously now, but hey you have to have a passion otherwise what good is life!

 :roll: Cheers 8)

#9

#10

One thing about waiting list transplants is that you just never know. All the people ahead of you on any given day could be ineligible due to being sick, on hold, not passing crossmatching or something. It does happen. Not to me unfortunately, so far, but it does happen…

Pierre


#11

I don’t know if any of the new techniques would have helped in my case.

http://www.nephcure.org/

The above link has good information on FSGS and doing a google search for “Focal Segmental Glomerulosclerosis” brings up many sites. As far as FSGS reoccurring in a graft (it isn’t really rejection - that’s a whole other problem) there is a protein in the blood that can be measured to give one a sense if the FSGS is still active and would likely impact a graft. I’ve heard the protein referred to as the FSGS “permeability factor” and I have had blood tests that determined that it is still active in me - the test was done I think in San Francisco.

Even with the tests there still isn’t much data. The studies I’ve seen are something like 8 out of 12 individuals saw FSGS reoccur – the ‘n’s are small so there is no telling what any one individual’s experience will be.


#12

As far as FSGS reoccurring in a graft (it isn’t really rejection - that’s a whole other problem) there is a protein in the blood that can be measured to give one a sense if the FSGS is still active and would likely impact a graft. I’ve heard the protein referred to as the FSGS “permeability factor” and I have had blood tests that determined that it is still active in me…

Bill have you seen this study? This clinical trial had small numbers of patients, but the results are pretty interesting.

Am J Transplant. 2005 Dec;5(12):2907-12.
Preemptive plasmapheresis and recurrence of FSGS in high-risk renal transplant recipients.
Gohh RY, Yango AF, Morrissey PE, Monaco AP, Gautam A, Sharma M, McCarthy ET, Savin VJ.
Division of Renal Diseases, Department of Medicine, Brown University School of Medicine, Providence, RI, USA. Rgohh@Lifespan.org

Recurrent focal segmental glomerulosclerosis (FSGS) following transplantation is ascribed to the presence of a circulating FSGS permeability factor (FSPF). Plasmapheresis (PP) can induce remission of proteinuria in recurrent FSGS. This study addressed the efficacy of pre-transplant PP in decreasing the incidence of recurrence in high-risk patients. Ten patients at high-risk for FSGS recurrence because of rapid progression to renal failure (n = 4) or prior transplant recurrence of FSGS (n = 6) underwent a course of 8 PP treatments in the peri-operative period. Recurrences were identified by proteinuria >3 g/day and confirmed by biopsy. Seven patients, including all 4 with first grafts and 3 of 6 with prior recurrence, were free of recurrence at follow-up (238-1258 days). Final serum creatinine in 8 patients with functioning kidneys averaged 1.53 mg/dL. FSGS recurred within 3 months in 3 patients, each of whom had lost prior transplants to recurrent FSGS. Two of these progressed to end-stage renal disease (ESRD) and the third has significant renal dysfunction. Based on inclusion criteria, recurrence rates of 60% were expected if no treatment was given. Therefore, PP may decrease the incidence of recurrent FSGS in high-risk patients. Definitive conclusions regarding optimal management can only be drawn from larger, randomized, controlled studies.

Publication Types:
Clinical Trial


#13

Just noticed there is a FSGS Conference in June in Philadelphia mentioned on nephcure website. Bill, are you going? They say they offering some scholarships to patients, I wonder if they would ship me over from Downunder :stuck_out_tongue: I asked my neph about a blood test similar to yours but he wasn’t aware of any test available in Australia yet. I sort of wish I hadn’t heard about it ( a bit like all these small machines you have available in the states). The fact that they are inaccessible to us here makes me want one even more…
Just dreaming, finally had my last test to gain access to the transplant list today. Will have to go and pack my bag :lol:
Cheers 8)


#14

Speaking about transplants, I just recieved notice that Kaiser Permamente San Francisco is in the process of suspending its kidney tranplant program…I’ve read stories around that they’re in a very difficult situation… for example, read below…

http://www.kaiserthrive.org/category/kaiser-kidney-transplant-scandal/

On the other hand, UCSF will take all of Kaiser’s current patients…


#15

I have been on dialysis incenter for five years, and hope to go on home hemo using the Nxstage machine. I have no plans of getting a txp… I will be happy to just do well on dialysis. I’m not on the txp. list. Lin.


#16

But are you a good candidate for a transplant? If so, it would be worthwhile to take advantage of both…home dialysis and the possibility of a transplant…


#17

I don’t know and haven’t really been interested so didn’t sign up. I’d just be content to feel better than I do and be able to contol my dialysis tx. times. Things are quite hectic in our household right now and I need more flexibility. Thanks, Lin.


#18

That’s reasonable, am glad you have come to make the choices that best work for you… :smiley:


#19

Ive had one transplant and was very lucky that it worked perfectly for 7 years. I was also very lucky that I only waited 9 months. It then started to dwindle, but took 2 years before I got a diagnosis. They cant tell me why it rejected, but it was possibly one of two things. I do admit I did forget to take my tablets probly more than a few times, I know its a bad excuse, but I was only 15 and as teenagers and young adults do, we have alot of other things on our minds. I also had a bad virus, and it was not too much longer after that, that I started to feel unwell. It was a slow process (thankfully). Basically my energy levels started to go down very slowly, and I knew this because I used to walk everywhere (no car). Then after about a year I was too tired to do anything, but, I was also in an abusive relationship which didnt help. It was not until about 2 years later that my blood results were actually changing significantly, and after the 3rd biopsy, they diagnosed rejection of unknown cause. It was very dissapointing, and its only now that Im on dialysis that its really sunk in.
I did have a few hiccups along the way, a couple of surgeries, but other than that I couldnt recommend it more. I do know not everyone has a good experience, but your not going to know until you have one. That is a choice you yourself need to make.
I am going to try for another one, my mum wants to donate me one of hers, and she is a good match. I am just concerned that she has to go through surgery, and will only be left with one kidney.
Its really my only option if I want to attempt to have a better life. I am a registered nurse, but at the moment Im only nursing myself :lol:


#20

Our neph said that when transplants go bad the person gets very sick. Is that always the case?

There is a lot of discussion at Dialysis & Transplant City website about risks of donation.