Transplants-how do you feel about them?


#21

Heather, each person is different. I wasnt extremely ill, but I was very tired, and towards the end was getting nauseas. I chose to go on dialysis before I actually needed it, because by that time, I was extremely tired, and couldnt handle it any more.
I have heard that some people do become very ill, dont quote me on this but I think if you lose the kidney not long after its transplanted it can make you very sick. Im not 100% sure on that though.


#22

amba,
Many people have said that daily txs allow one to feel as good as with a transplant. But I see where you and the person named Bruce want another transplant. I read that you do not actually dialyze daily although you do nocturnal txs. So, since you have experienced both, what exactly would you say is the difference in your energy level and other benefits with nocturnal (although not daily) vs transplant?

We haven’t read all the posts yet, but staff at Dialysis & Transplant City seem to say that there are more risks to the live donors than the transplant docs reveal.


#23

If I could feel just as good on home hemo as getting a txp., but not dealing with the meds., I will do it in an instant. Not that there are any donors for me but I wouldn’t go that route anyway, would only consider a cadaver donor. I could not risk any problems for the donor. I don’t think it’s fair of me to expect people to risk so much when it’s not really neccessary. I think if what those on home hemo are saying is that life is better I wouldn’t bother getting a txp… Perhaps the more on home hemo the less need there will be for txps… There simply aren’t enough to go around, and it’s not going to get any better in the coming years. The powers that be should be thiniking ahead, to an even bigger shortage, not enough room for all the incoming pts. in the already standing units, ect… and encourage home hemo programs. So far there aren’t too many doing that, mostly Dori and Beth… Lin.


#24

I would have to agree with Lin,

I really could not take a living donors kidney, no matter who it is. Though I had a cadaver transplant in the past I must admit that there are some bad things while having a transplant but for the most part a small percentage of transplant recipients get very very lucky with a perfect match and some have had the option of stopping all anti-rejection medications! On the other hand most people would choose freedom regardless of the side-effects that come with a transplant.


#25

I’m on the waiting list, and I will have been on it 4 years this October (the last year and a half on daily hemo and the last year almost to the day since I went from short daily to daily nocturnal.

I know so many people who have had a kidney transplant that I can say unequivocably I’m sure I feel as good as they do, and often better, especially during their first year of adjusting meds and other factors. I have NO DOUBT about it. But then, they don’t have to be on dialysis 6 nights out of every week - which means being stuck in bed from about 11 PM until 7 AM (not counting the prep and takedown time). They don’t have to wait for supply deliveries. They don’t have to worry about infections (from accessing the blood), bleeding, etc. They don’t have the stresses of setting up a whole treatment only to have to get off because some problem develops.

I will still take the cadaver kidney if and when I get it. Why? I think research shows that a person with ESRD has a longer lifespan with a kidney transplant than on dialysis. Now, studies about this involve conventional dialysis vs transplant. Daily hemodialysis hasn’t been studied enough yet to know how it fares in terms of lifespan. I’m betting that any time I get with a kidney transplant will be better time than on dialysis.

I was never too crazy about taking a kidney from a live relative. I know many people do it and I’m not critical of that decision, but it’s not something I’m comfortable with. I had one potential live donor who failed the evaluation early on after I started dialysis 4 years ago, and to be honest, I was more relieved than disappointed. Given a second chance to reflect on this, I told all other potential donors that I preferred to wait for a cadaver kidney.

But the bottom line is that I’m not giving up my chance to get a kidney transplant while I still can. Things happen, and it’s not that hard to become ineligible for one due to heart problems or whatever which happen as a result of a long time on dialysis.

At any rate, I don’t see it as an “either or” situation. I think that over the course of our lives with ESRD, we will face dialysis and transplant at various times. Take the transplant when you can, do the dialysis when you have to.

Pierre


#26

Heather, I my energy has improved on nocturnal, however I am still tired, and at the moment very tired as Im still anaemic and havent been sleeping well every night for a few reasons.
For me, the difference between nocturnal and transplant, basically for me was “reality”. After the transplant I felt normal again, as if I hadnt even been on dialysis. I feel no where near as good even on nocturnal, as what I did with the transplant. However, I choose to do nocturnal because of several reasons. It allows you alot more freedom with diet, you do have more energy (everyone is different), most of your blood levels return to normal and are alot more stable. It is much better for your heart in the long run. When I was on in-centre, I had awful trouble with the rebound effect after doing such short treatments. I had high blood pressure, and no matter what I ate my potassium was too high.
Even if I felt normal on nocturnal I would still want a transplant, because the fact is, dialysis does not do what your kidneys can do. It does about 50% of the job, and alot less on in-centre. Eventually, this is going to catch up with you, and you end up with all sorts of other problems on top of renal failure. While the expected lifespan is better with nocturnal, it still isnt as good as with a transplant.
What alot of people dont seem to understand, is the longer you are on dialysis, the more it affects the rest of your body. I see nocturnal as a way of giving me more time to stay reasonably well until I get a transplant.


#27

In regards to live donors, I am doing it because my mum wants to do it for me. We have good doctors and surgeons here with years and years of experience, and I trust that they would answer any questions I have about my mums health post op.


#28

Amba,
Could the reason you don’t feel totally energetic with your nocturnal txs be due to the fact that you dialyze every other night rather than nightly? Because I was just reading some testimonials from nocturnal patients at Lynchburg Nephrology and to hear them describe it it is as good as a transplant. Everyone of them spoke about how well and energetic they felt. They say it gave them their life back etc.


#29

Im sure it would make a difference if I dialysed every night, but its not available here. As far as I know the max is 4 nights. The fact is, Id rather have a transplant than have to dialyse every night. I can only just handle doing it every second night. Its a bit hard to explain unless you have been in the situation yourself. When you dialyse at home, it is constantly on your mind, you dont have the freedom of just simply hopping into bed every night. And on the nights I dont dialyse, I enjoy every minute of it.


#30

Hi

I have avoided this subject on this board, but I want to add my two cents.

My first surgery was 2 wks after I was born. Then in 73 to 74 I was in UHP, in phila. pa. I had tubes going in and tubes going out. From 78 to 2005 I’ve had what at times seems likes countless surgeries. In real terms it is sowhere around 25 or 30 . Which to some people would be nothing, but to others is one to many.

AS far txp. I look at things here and know and say it hard to get daily txs. But to me life has not that easy at times I read on this page that people can and do live very happy lives on dialysis for a # of yrs. So for me and me only I had said no to txp. If I was in my teens or 20’s even 30’s 40’s and had not had so many trips to have things fixed. Like I said this is just me. Sorry for not getting in on sooner. I had to really talk with all my family members first and then they left it up to me.
bobeleanor :smiley:


#31

Let’s not forget that those statistics about living longer with a txp… don’t take into consideration that many on dialysis are elderly and have other comorbid conditions. Do you suppose that someday they will do studies that will show that those on homehemo, or even those who are incenter nowadays (not twenty years ago!) will do just as well or even better than those getting a txp.? I’m banking on that. I choose not to have surgery, not to go around asking friends and relatives if they would like to have surgery, and not to be on a waiting list. I don’t really love going to the unit three days per week, anymore than anyone else would enjoy adding three days to their work week, but it’s doable. I believe that some day soon they will discover that home hemo is equal with getting a txp… Lin.


#32

I dont know if Ive mentioned this, but I am only 26, never worked, not married, no kids. I have my whole life ahead of me. So I want to take a chance at a transplant because I would like to accomplish all those things.

Lin., there is absolutely no way that in centre Dx is as good as a transplant. Its not even close. You need to understand that normal kidneys (or transplanted ones) are working non stop 24 hours a day. In centre dialysis is generally 4 hours 3 times a week. It is enough to keep you alive, but it can and often does, have undesirable effects on your heart, bones, etc.

Over here, when you first go home on hemo, the norm is 5 hours every second day. This wasnt enough to bring my phosphate down, so I was doing 6 hours 4 days a week. It is still no comparison to normal kidneys.
I am now doing 10 hours every second night (trying to work up to doing 4 nights a week), and although alot of my blood levels have come down/up to normal, there are still some that are very high, as compared to a normal healthy person.

Hmm I feel like Im back at uni writing an essay :lol:

Lin., I wouldnt be banking on anything as far as 3x4 goes, thats up to the government to provide alot more funding for longer in-centre dialysis, and research.


#33

Hi Amba, Understood! Everyone has to do what is right for them and their particular situation. Txp. carries risks too, including but not inclusive are the risks of the meds… so for me the risks of being on dialysis aren’t greater, just different :wink: There is no cure, just treatment.
The statistics are not for the pt. population I’m in, they are older stats, and don’t take into consideration that we have better meds and regimes, more efficient dialyzers, and know more about the dialysis process, than ever before. Perhaps they should do a study on just younger pts… I include myself because I’m only 51 :lol: The Canadian studies on home hemo look very promising. I’m just trying to do the very best I can FOR ME. I am a tad older than you, have two grown sons, a grandaughter, and son who is ill and lives at home with us. Perhaps if I didn’t have the responsibilities that I have I would consider a txp… but not sure. We have pkd, an inherited kidney disease in our family.
You are younger than I, with your whole life ahead of you, and I wish you all the best, all beit a different route than I’m taking. Lin.


#34

I have been reading about the artificial Kidney…has any one else been following this ?


#35

The dialyzer used for hemodialysis is sometimes called an “artificial kidney.” I suspect you’re not referring to that. Are you referring to the implantable artificial kidney?
https://pharm.ucsf.edu/kidney/device

There is also news about xenotransplantation. Here’s what the FDA says about that, including concerns.
https://www.fda.gov/biologicsbloodvaccines/xenotransplantation/default.htm


#36

Hello Beth…Yes…an artiffical kidney has been developed that is implanted…there is no rejection…but the problem is blood clots…there are clinical testing now done on Humans…from what I read it could be available in the US as soon as 2020 -2025…