Transplant Stories

I would like to open this thread up to ppl who have had first hand experience with transplants as there is a question mark in our minds as to which is the better option, nocturnal dialysis or transplant. It is usually assumed that transplant is the better choice as one is no longer tethered to the machine, but we would like to hear a thorough discussion of the risks and benefits of both modalites.

I hate to say this but my Doctor advised that the transplant is way way better, it simply beats the way it cleans the body, there’s simply nothing like a real kidney inside of you…

My doctor here says the same thing, Gus.


A good transplant beats good dialysis, a bad transplant is worse than bad dialysis. I think a transplant has higher highs and lower lows.

There is a certain amount of risk involved with a transplant and taking post transplant medications; depending on comorbidities and what caused the kidney failure one person’s weighing of the risk will be different from someone else’s weighing of the risk. If your Doc thinks a transplant would be a good choice in your situation I would give that advise allot of weight.

One obvious advantage of daily nocturnal is that you can easily change your mind after you try it. My decision to not be on the transplant list does not mean I am without hope. I try to get as much dialysis as I can so that I maintain my health for future medical advances that will make a transplant a better option in my case (recurring FSGS).

I think as with any decision regarding ESRD one has to look at each case very individually and thoroughly. I know in our program some patients are excellent transplant candidates. However, there have been some patients who are on the transplant list and the staff isn’t as positive thinking as the patients are.

The United States is the only nation in the world that will put anyone on dialysis, no matter how old you are or how sick you are. Furthermore, the population coming onto dialysis is going to be older and sicker, as time goes by.
The grand majority of patients being transplanted are in far better shape than those who are not being offered the option of transplantation. Most are too old and too sick.
As for dialysis dialysis, where it is being used, it’s showing great promise in raising the levels of wellness of patients, making their lives better. Presently, it’s an under-used therapy that nephrologists need to begin looking at, seriously, as opposed to shipping off all the well patients to transplant centers.
It’s an unfair comparrison, presently. Unless more patients are given the opportunity to enter and stay on a daily home dialysis program, we’ll never truly know just how daily hemo will stack up against transplantation.
As for statistics, anyone who has taken a stats course knows you can make the numbers support about any position you want to take. And, the Transplant Industrial Complex wants you to be transplanted, in anyway possible, living or cadaver kidney.
It’s interesting to note that dialysis providers are mandated to present all the different options of renal replacement therapy, such as home or incenter hemodialysis, peritoneal dialysis or transplantation. Transplant centers, on the other hand, only sell transplantation to patients and they do it with a vengence, whether it would be good for you, or not. Talk about biased!
Dialysis is a great therapy that is getting a bad rap from the Transplant Industrial Complex and the media. I go to work every day and save lives when I dialyze a patient. These people will die if they are not dialyzed. The media and the Transplant Industrial Complex want you to believe that these patients are suffering horribly with each treatment and that they are dying while being dialyzed, which is a lie. If you take that point of view, you can say that we are all dying from the time we are born. So, in a sense, we are all dying right now. I’ll die in about two weeks if I don’t eat any food and sooner if I don’t drink any water. Does that mean that I need a transplant in order to live? I know this comparrison seems a bit ridiculous, but that’s the equivilent of what the Transplant Industrial Comlplex and the media are shoveling to the public.
Dialysis patients are not dying. Instead, they are living on dialysis. The older a patient is, the shorter their lifespan will be, whether they have renal disease, or not. It’s the same with younger patients and younger people who are not on dialysis. Now, it is true (barring an accident) that someone with kidney disease will have a shorter lifespan than someone who does not have kidney disease. This doesn’t take a rocket scientist to understand.
What the Transplant Industrial Complex and the media are missing is that dialysis is not a death sentence, unless it’s stopped. In fact, daily hemodialysis or peritoneal dialysis, if done properly, may be superior to transplantation in outcomes. Suppresion of your immune system is not normal and is not the best thing in the world to consider. If a Bird Flu pandemic came around, these people would be in big trouble. They would be the first to die. However, a patient dialyzing daily, with an intact, non-suppressed immune system might have a much better chance of fighting off the disease.
Just food for thought.

Rich Green

Jane reposted Rich Green from D&T Cities post (in the original thread the post was in regard to dialyzor life expectancy)

If a Bird Flu pandemic came around, these people would be in big trouble. They would be the first to die.

Actually that might not be the case. If the next pandemic is of the same sort as the 1918 Spanish Flu pandemic then people with robust immune systems will be most at risk. This is because this “flavor” of flu induces the body to produce a “cytokine storm”.

A “cytokine storm” overwhelms the body by over stimulation of the immune system. This quirk is why youngish and otherwise healthy people were disportionately impacted by the Spanish Flu. If H5N1 (Bird Flu) is the next pandemic youngish otherwise healthy individuals could again be disportionately impacted, this is what is being seen this year in the Indonesian clusters.

All this means that if you are CKD5 having a transplant is by far the best strategy to avoid dying of Bird Flu. Not only would you not have to congregate in clinics, if you did catch H5N1 your suppressed immune system may allow you to fare better than a healthy individual.

I can only agree with Bill, a successful transplant that coninues to last well, with minimal or NO rejection, is the best thing one can have.
My last one gave me 9 years some sort of non dialysis life, although I had repeated infections, biopsies, & some very high does steriods at times.
IF I was to have another transplant, it would be my 4th.
With a trasnplant being a fairly major op, despite modern technology, I am somewhat reluctant to go back “on call” just yet.
Also inspired for home haemo, even tho I’m not yet 30! :slight_smile: by the likes of Gus, Bear, & my friend Caroline, who probably isn’t aware that I’m posting here:D

A perfect match (as the media like to call it here in the UK) is a gift of life, & if it works, it truly is, if it doesn’t you rarely find the media covering it the same way as when a ‘gift of life’ transplant is received.

Just my bucks worth:)

hello all, i’d just like to make a comment on this subject, i think most people would pick to have a transplant & hope that it was the right one. my hubby and i have just started training for home dialysis, this will be our third week coming up. JW77 when i read your story, my automatic response was i feel sorry for you but i think you would not want any one to feel sorry for you. i hope one day you do get the right match, if you do decide to go back “on call” good luck & take care.

Of all my entire years of having ESRD I’ve only had one transplant that lasted almost 3 years, it was not an easy transplant…lots of complications and side-effects. However, that tranplant saved my life as I was not doing well on dialysis back in 1978.

Getting a transplant is a gamble, you really don’t know what to expect! It can be a good transplant or can be a disastrous transplant, but we ask ourselves is this all worth it? For some of us it is and for others its not.

Would agree with Gus that transplant is a gamble. We know a number of educated patients who went for that gamble after approaching it very carefully and it did not work out in their case- they died! On the other hand, others have had their lives greatly improved by a transplant. So, what factors make it worth the gamble?

Died eh? Well, I’m not approaching it very carefully, so I guess maybe I’ll be Ok :slight_smile:

I do know some local transplant recipients who didn’t fare well, especially that first year. I felt like a spring chicken and looked like a picture of health compared to them, and in some cases, I wasn’t even on daily hemo yet, just the conventional in-centre. But others did really well too, so, who knows!

But I’m still grabbing that opportunity for myself when it comes along, although after almost 4 years it feels like I’ll never get that call. My biggest worry would be to not be able to get right back on home hemo if it should fail. I would hate to end up forced back to in-centre on a permanent basis.


Hi Heather
I am coming up to 1 year on dialysis and have FINALLY got on the NSW loooong waiting list. Just had 10 vials taken for 2nd lot of tissue typing. I will be waiting probably as long or longer than Pierre and even though I have friends with transplants who are continually in and out of hospitals i won’t give up hope of having a dream run. In the meantime I am keeping myself as fit as possible which makes me feel as happy as possible (all those endorphens). Having others to talk to on this forum sure helps put things in perspective. We all continue to fight like the dickens and hope for the best outcomes.
Hey Pierre, not long now, I can almost feel yours is just around that corner. 8)

Alot of people seem to be worried about the risks of transplant medications. Of course there are risks, but what about the risks of being on long term dialysis? I think either way there are equally bad risks that you have to weigh up. I am definitely going for another transplant. I dont have a life on dialysis.


Thanks for sending some positive thinking my way.

I’m at the average waiting time for a type A in my area now. But you never know. I was actually admitted and fully worked up as a backup recipient 3 years ago for what I think was a perfect match, but I didn’t get the kidney. The other guy had an 80% chance of not passing the crossmatching, but he passed it anyway. Haven’t heard from them since, except to repeat some tests.

It only takes one call though! I hope you will end up with a perfect match kidney long before 4 years have passed.