Confused about survival after transplant -Don't forget to read page 2-

[Sara]

I've read several posts now that mention you (the patient) are going to die from complications anyway even after the transplant.  I always thought that once you had the transplant and you went through a period of time where your body was either going to reject it or accept it and once you got that "OK" you were going to have a normal rest of your life, unless something in your health (diabetes, etc.) caused your kidney to fail again later.  I'm just confused and little upset because I don't understand what's really going to happen to my husband after going through all this.  Is he only going to die just a few years later?

[Epoman]

I've read several posts now that mention you (the patient) are going to die from complications anyway even after the transplant.  I always thought that once you had the transplant and you went through a period of time where your body was either going to reject it or accept it and once you got that "OK" you were going to have a normal rest of your life, unless something in your health (diabetes, etc.) caused your kidney to fail again later.  I'm just confused and little upset because I don't understand what's really going to happen to my husband after going through all this.  Is he only going to die just a few years later?

Bottom line is a transplant is NEVER a cure for Kidney failure it too is just a treatment. A transplanted kidney WILL eventually fail that is a fact. The transplanted kidney may last 1 hour to 30 years or more but there is NEVER a safe zone. It is true the longer you have the transplant the chances of survival get better. But remember it is NOT a cure. The anti-rejection drugs can cause several other medical problems and highly increase your risk for infections. I myself chose not to get a transplant due to risks associated with the process. Some people have really good results with a transplant and others wish they had never tried in the first place. I have met people from both sides. Some people have several transplants in their lifetime.

Sorry if this post was harsh but that is the truth, no sugar coating and that is what this place is all about. I wish your husband Joe all the luck in the world with his transplant.

[Rerun]

Epoman is right on!  A Transplant is just another form of dialysis.  I had mine for 17 years and did very well.  Too well!  When I was losing it I was a basket case!  I felt like I was losing my best friend and there was nothing I could do.  I'm having to move back home to Spokane from Sacramento and giving up a $70K a year job.  Hey!  It was great while it lasted, but the higher you are the harder you fall!
I'm trying to get back on the list just so I have the option for another one.  But, to tell you the truth, I'm not ready to get back on that roller coaster ride again just yet. 

The drugs that keep your transplant have HUGE side affects.  It is a big decision.

[geoffcamp]

I had the same experience as rerun. But I only had my kidney three years.  I lost it due to a drug interaction.  I have been reluctant to try again until recently as my dialysis access clotted (a fistula) and I have had four procedures to try unclotting the oringinal fistula and then the graft they put in, which had to be done twice because the first surgeon screwed up the graft clotted before I left the OR and he "nicked" some nerves and caused damage to feeling, movement and strenth in my hand and wrist.  So I have decided to give transplantation another try, the doctors have been trying to get me to do it since the first one failed.  I have had the same experience as rerun financial ruin, move back home give up a 50K a year job it was a hard fall.  I am really tired of dialysis and want to try to get back to some kind of normal life however, I do worry about the affects of the anti-rejection drugs... long term.
Geoff

[Naggy6]

I haven't put up my transplant story yet, I haven't really had much time to sit and give the whole story. Most of the time when I go on line I'm not at home  seems I'm hardly ever at home these days. But I'm getting a new laptop soon so I will be able to go on and and give my story.

Any way I have had three transplants and would do it again. As a matter of fact I do hope to be able to do it again.

[ulrika]

Does anyone know if there is a difference in survival between a living donor, or a cadavric donor transplant.
We were also of the opinion that once you had a transplant, you could go back to living a normal life, unless you die from unrelated causes.
Thanks for this site where we get to hear the truth from those who knows best, without it being wrapped in cotton.
 Hugs, Ulrika

[Epoman]

Does anyone know if there is a difference in survival between a living donor, or a cadavric donor transplant.
We were also of the opinion that once you had a transplant, you could go back to living a normal life, unless you die from unrelated causes.
Thanks for this site where we get to hear the truth from those who knows best, without it being wrapped in cotton.
 Hugs, Ulrika

Below is what I wrote above in this thread:

Bottom line is a transplant is NEVER a cure for Kidney failure it too is just a treatment. A transplanted kidney WILL eventually fail that is a fact. The transplanted kidney may last 1 hour to 30 years or more but there is NEVER a safe zone. It is true the longer you have the transplant the chances of survival get better. But remember it is NOT a cure. The anti-rejection drugs can cause several other medical problems and highly increase your risk for infections. I myself chose not to get a transplant due to risks associated with the process. Some people have really good results with a transplant and others wish they had never tried in the first place. I have met people from both sides. Some people have several transplants in their lifetime.

Sorry if this post was harsh but that is the truth, no sugar coating and that is what this place is all about. I wish your husband Joe all the luck in the world with his transplant.

So bottomline is NO you won't live a normal life after a tranplant. Unless you consider having a lowered immune system normal? or living with knowing that the kidney can fail at any time and you will be back on dialysis all over again. Because he is the hard truth "The Kidney WILL fail eventually" It could last an hour or it could last 20 years, but it's going to fail. That's why you hear all these people talk about mulitple transplants. There will be side effects from the drugs you take, weight gain, possible steroid induced diabetes, greater risk of infection, a multitude of problems. BUT you may be the lucky one, every once in a while I hear about a PERFECT transplant experience. I'm not trying to scare you, just give you the facts.

- Epoman
Owner/Admin

[Rerun]

Yes there is a better survival rate with a living related donor.  But, cadaveric transplants are not far behind in survival rate.  I don't want a living related or living period donor.  I would feel too guilty if something happened to the donor or my transplanted kidney.  It is hard enough knowing someone died in order for me to live.  But, they are not going to need it. 

I signed my donor card in 1983 not knowing I'd be on the waiting list 4 years later.  I was so glad I had made that choice to give before I received the gift of life.

[kevno]

I was going to type may transplant story but thinking about it, I am not going to, just to say Had it in 1980 given new wonder drug to stop rejection my mum and dad had to sign for it. OD on it, so damaged Transplanted kidney. Kidney sort of worked till 88 never out of hospital for longer that 4 weeks. Went back on CAPD, felt  100% better than the Transplant. Used to go on holiday, play sports, walking and felt really well on CAPD. Now on haemo feel like I felt having the transplant. Maybe the transplant was just bad luck for me. If I had not been put on that trail for the new anti-rejection drug, and just gone on steroids. It my have been a lot different. I do know a lot of people who have had transplants and look and feel really well. One is even a nurse now. But the other side, I also know a lot of people who are back on dialysis. I feel some people feel that a transplant is the one answer, maybe for some it is, but not many.

The drug is still being used now, but now with steroids, the levels are always being checked. Won't type the name of it, have not got a clue how to spell it.

Kevno

[livecam]

If the question here is will you live a normal life after transplant there are several answers.  The great majority of people do not have major complications these days particularly due to the advancement in immunosuppresive drugs.  Speaking only from my own experience my quality of life is completely normal if you want to call it that.  Yes the kidney could reject, yes treatment compliance is required, your immune system is not as effective as someone who is not on immunosuppresives etc.  In 4 1/2 years I've had no major complications with the kidney, I've been around plenty of sick people,  have had a few colds, and had a tiny patch of skin cancer(fixed in about 10 minutes).  I never stopped working except for 3 months immediatly after the transplant that was handled very nicely by disability. So life is as it was before kidney disease and it isn't bad.  Having been on dialysis for several years and having had the pleasure having it stop cold turkey with a good transplant I would always recommend transplant.

[Epoman]

If the question here is will you live a normal life after transplant there are several answers.  The great majority of people do not have major complications these days particularly due to the advancement in immunosuppresive drugs.  Speaking only from my own experience my quality of life is completely normal if you want to call it that.  Yes the kidney could reject, yes treatment compliance is required, your immune system is not as effective as someone who is not on immunosuppresives etc.  In 4 1/2 years I've had no major complications with the kidney, I've been around plenty of sick people,  have had a few colds, and had a tiny patch of skin cancer(fixed in about 10 minutes).  I never stopped working except for 3 months immediatly after the transplant that was handled very nicely by disability. So life is as it was before kidney disease and it isn't bad.  Having been on dialysis for several years and having had the pleasure having it stop cold turkey with a good transplant I would always recommend transplant.

Awesome, it's nice to read about some success stories. I hope your kidney lasts you for the rest of your life. The more the drugs/technology advance the more success stories will be reading.

- Epoman

[kevno]

I am out of touch with Transplant drugs now. Do now a couple of my friends who have had their Transplanted kidney for over 25years. They only come to the hospital once every 6 months for a blood test. Both look great, have children. One is even a Granny now ( she does not like me calling her Granny So I call he it all the time when I she her )

I think when I had my transplant the odds of you keeping it was not that good. Then if you kept the tansplanted kidney for 5 years is was a success. So in on sense mine would have been called a success. (But not from my point of view). But all things move on, the success rate is a lot better now because of the new drugs.


I am happy for you livecam that you transplant as work so well, and may it carry on.

Kevno

[Panda_9]

I am a little offended that people have said life isnt normal after a transplant. If you have never had one, how would you know? Its true that some people have alot of trouble afterwards, BUT thats not EVERYONE. You can lead a normal life with a healthy transplant. And YES, it does happen. I had an excellent transplant, and know many others who have too.The only main out of the normthings were - you must take all your pills, stay well hydrated, and generally look after yourself. Saying you cant lead a normal life is misleading and wrong. You will not know how it is going to be until you go through with it if you so choose.
Its no comparison to dialysis, its the opposite. You have to drink alot, your diet is not restricted (you do need to be careful about weight gain), and you arent sitting on your arse 3-4 days a week for hours at a time hooked up to a dialysis machine!

[Epoman]

I am a little offended that people have said life isnt normal after a transplant. If you have never had one, how would you know? Its true that some people have alot of trouble afterwards, BUT thats not EVERYONE. You can lead a normal life with a healthy transplant. And YES, it does happen. I had an excellent transplant, and know many others who have too.The only main out of the normthings were - you must take all your pills, stay well hydrated, and generally look after yourself. Saying you cant lead a normal life is misleading and wrong. You will not know how it is going to be until you go through with it if you so choose.
Its no comparison to dialysis, its the opposite. You have to drink alot, your diet is not restricted (you do need to be careful about weight gain), and you arent sitting on your arse 3-4 days a week for hours at a time hooked up to a dialysis machine!

I'll repeat what I said:

So bottom line is NO you won't live a normal life after a transplant. Unless you consider having a lowered immune system normal? or living with knowing that the kidney can fail at any time and you will be back on dialysis all over again. Because he is the hard truth "The Kidney WILL fail eventually" It could last an hour or it could last 20 years, but it's going to fail. That's why you hear all these people talk about multiple transplants. There will be side effects from the drugs you take, weight gain, possible steroid induced diabetes, greater risk of infection, a multitude of problems. BUT you may be the lucky one, every once in a while I hear about a PERFECT transplant experience. I'm not trying to scare you, just give you the facts.

aMbEr_79, many people here have had transplant and most of them FAILED!. When I say you won't live a normal life that is very true, you may live a better life but it is different than having a NORMAL HEALTHY body/life. Some of our members here have had MULTIPLE transplants in their life. You ask ANY doctor and they will tell you the transplanted kidney will eventually fail. It is true there are success stories but the sad stories far out weigh the happy ones.

Let me quote you:

The transplant worked perfectly for 7 years. Then I started to get very tired all the time, but it took 2 years before I was showing signs of the transplant failing. It failed completely after 9.5 years.

That's great that your kidney lasted almost 10 years and I glad it lasted so long for you, however when it happened, you had to go through all the emotions that you went through when you first started dialysis. And now you're back on dialysis, that's not living normal. I think you need to read the introduce yourself section again to read our members bio. You said:

I am a little offended that people have said life isn't normal after a transplant. If you have never had one, how would you know?

Well I'm a little offended to, that you made assumptions about the members here. Many who have posted here have had a transplant. It's true I have never had a transplant, I always choose not to, however I have seen many people get a transplant then get back on dialysis and some (a few) are now dead.

A transplant can be a blessing or it can cause you to come out of it worse off. It's a gamble some are willing to take, I choose not to get a transplant almost 12 years ago, technology/drugs has improved so it's less of a gamble now-a-days. But it's still a crap shoot.

- Epoman

[Gil]

Every patient has his/her experience and many try to project it on others.
But no one can tell others what's good for them.
That's true for treatment modality, diet, labs, treatment time, and transplant.
I left the brumley board because of a bunch of PD cheerleaders that persistently tried to convince every newcomer that PD was the best thing in the world. Trouble was, sometimes they hit on a person that had a bad experience with PD, like our Martian friend here (hi DMC).

A good example about useless experience is my transplants.
The first one worked fine and looked like a success. In 13 days I was back to work. But after 6 weeks it was out because of CMV.
The second never started and left me with 3 years of a deadly infection.
The third caught up after a months, for about a year I had to go to the tx clinic a few times a week, and now, after almost 5 years I see my doc once every 6 months.
Conclusion: none.
Do I live normal life? Not even in my dreams. (Still have nightmares about going back on dialysis).
Was it better to stay on dialysis? Not for me! (And dialysis was easy on me).
Will I go for a fourth? Before the third I said that it would be the last one, but now, who knows? Past experience means nothing.

My recommendation to everyone is to learn his/her options but to remember that whatever you choose might not work for you. If you don't try you don't know, but that's nobody's business.
Everyone has to make his/her own decision and shouldn't apologize or feel ashamed for that.

Gil

[kitkatz]

I agree with you Gil. Noone can tell you what you can do in your own treatment plans.

[Rerun]

I don't think anyone is "telling" anyone they have to do anything.  We are stating our opinions and other members can take it or leave it.  But, that is one reason to be a member of this site.  Gather the information presented and go from there.   

[Panda_9]

What I am trying to say is....while my transplant was working, my life was normal. It was worth it. If I had of chose not to get a transplant I would probly be up shit creek by now, because we all know the risks of being on long term dialysis. I agree that everyone has their own opinion, but I find you Epoman, to be very rude and focus on the negative.
My transplant gave me 7 years of normal life, that I could never have on dialysis. Yes, there are downsides to a transplant, but any I had, were worth it. Like I have said, its your choice if you want to do it. And you can never tell if it is going to be good or bad for you. Technologies are improving all the time, and I am going to give it another go. I dont want to live a pathetic life of being on dialysis and not being able to work. Living on one income is a bitch! I am a qualified nurse, I should be looking after others, not just myself 

[kevno]

aMbEr_79

I have only had a bad experience with a transplanted kidney. It hang on for nearly seven years, last two were hell. Always in and out of Hospital, with rejections. Felt so ill with the kidney. I was happy to go back on CAPD felt 100% better, than having the transplant,  but after 12 years CAPD nearly killed me. Been on haemo for 6 years now. Still on the transplant list. Would try another one. Just to get out of haemodialysis.

Kevno

[ulrika]

Hey Kevno;
My daughter just finished her pd training, and is now on her 4th day of doing it at home. So far it has gone very well, she is a real trooper.
We were told at the clinic that you cannot be on pd indefinitely as the membranes will wear out.
Could you tell me what happened to you after 12 years of capd?
As you know, I have created a blog in desperation to find a kidney for Sandra. However, I also want to use my blog to educate others on what it is like to live with end stage renal failure.
I want to be 100% accurate on what I publish, and the best way to get the truth is through those who are going through it. I appreciate any feedback the people on this board can give me. Even tell your story in my guestbook, or in the comment section under my (almost) daily entries.

http://kidneytransplantforkyliesmom.blogspot.com/

Hugs, Christina (ulrika)

[Epoman]

What I am trying to say is....while my transplant was working, my life was normal. It was worth it. If I had of chose not to get a transplant I would probly be up shit creek by now, because we all know the risks of being on long term dialysis. I agree that everyone has their own opinion, but I find you Epoman, to be very rude and focus on the negative.
My transplant gave me 7 years of normal life, that I could never have on dialysis. Yes, there are downsides to a transplant, but any I had, were worth it. Like I have said, its your choice if you want to do it. And you can never tell if it is going to be good or bad for you. Technologies are improving all the time, and I am going to give it another go. I dont want to live a pathetic life of being on dialysis and not being able to work. Living on one income is a bitch! I am a qualified nurse, I should be looking after others, not just myself 

WHERE/WHAT did you find about my post "very rude"? However I find your comment "live a pathetic life of being on dialysis" VERY RUDE and hurtful to the many people who live on dialysis. Whether they choose to have a transplant or not and those who are not eligible for a transplant. I do NOT find my life PATHETIC one bit, yes I hate dialysis and I wish I was not on dialysis, BUT I would do it all over again if it meant I would be able to have the loving wife I have, the wonderful son I have and being able to have the skill to create this website which has helped many. So if you consider me pathetic well that's VERY RUDE/HURTFULL. Your comment is VERY insulting, There are numerous people who are on dialysis who have become great advocates for this disease and have made great progress for patients, do you find their life PATHETIC?

I am not focusing on the negative, I look at the facts and make my decisions on the facts. And the fact is, that a transplanted kidney WILL FAIL, whether it be 20 years or 20 minutes. Can you understand that? It is my choice to make and no one Else's. I wish the BEST and may GOD himself shine on a transplanted kidney for someone who is willing to take that path. And I wish that person the best.

You said "My transplant gave me 7 years of normal life, that I could never have on dialysis." Do me a favor and DEFINE Normal? in my life I done many normal things, while on dialysis, I have self taught myself computers, I can build a computer from scratch, I can build websites, I am raising a son who is top of his class and in the gifted program at school, I supported my with in her finishing college, supported my wife in her goal of having a job she loves and cherishes, and according to some of the members here they thank GOD for this site. Because of Kidney Failure I have a opportunity MOST men do not, I am a stay-at-home dad, I am VERY active in my sons school, I am currently one of the Vice-Presidents of my sons PTA, I am the Yearbook chairman, volunteer in the class every Thursday, all morning, and now I'm the schools Historian. I LOVE being a stay-home dad and would not give that up for the WORLD. If given a choice to go back in time and change my fate, if it meant losing what I have now, the answer would be a undisputed NO! and I have been on hemo for almost 13 years STRAIGHT! I HATE my illness but I love my life.

And I most definitely don't think (as you do) my life is PATHETIC. This is my life, to me, it's what I know and to me that's Normal.

So please point out where I was "very rude" and "focused on the negative".

- Epoman
Owner/Admin
ihatedialysis.com
ihatedialysis.net
ihatedialysis.org
Father
Husband
Dialysis Patient

[Epoman]

What I am trying to say is....while my transplant was working, my life was normal. It was worth it. If I had of chose not to get a transplant I would probly be up shit creek by now, because we all know the risks of being on long term dialysis. I agree that everyone has their own opinion, but I find you Epoman, to be very rude and focus on the negative.
My transplant gave me 7 years of normal life, that I could never have on dialysis. Yes, there are downsides to a transplant, but any I had, were worth it. Like I have said, its your choice if you want to do it. And you can never tell if it is going to be good or bad for you. Technologies are improving all the time, and I am going to give it another go. I dont want to live a pathetic life of being on dialysis and not being able to work. Living on one income is a bitch! I am a qualified nurse, I should be looking after others, not just myself 

WHERE/WHAT did you find about my post "very rude"? However I find your comment "live a pathetic life of being on dialysis" VERY RUDE and hurtful to the many people who live on dialysis. Whether they choose to have a transplant or not and those who are not eligible for a transplant. I do NOT find my life PATHETIC one bit, yes I hate dialysis and I wish I was not on dialysis, BUT I would do it all over again if it meant I would be able to have the loving wife I have, the wonderful son I have and being able to have the skill to create this website which has helped many. So if you consider me pathetic well that's VERY RUDE/HURTFULL. Your comment is VERY insulting, There are numerous people who are on dialysis who have become great advocates for this disease and have made great progress for patients, do you find their life PATHETIC?

I am not focusing on the negative, I look at the facts and make my decisions on the facts. And the fact is, that a transplanted kidney WILL FAIL, whether it be 20 years or 20 minutes. Can you understand that? It is my choice to make and no one Else's. I wish the BEST and may GOD himself shine on a transplanted kidney for someone who is willing to take that path. And I wish that person the best.

You said "My transplant gave me 7 years of normal life, that I could never have on dialysis." Do me a favor and DEFINE Normal? in my life I done many normal things, while on dialysis, I have self taught myself computers, I can build a computer from scratch, I can build websites, I am raising a son who is top of his class and in the gifted program at school, I supported my with in her finishing college, supported my wife in her goal of having a job she loves and cherishes, and according to some of the members here they thank GOD for this site. Because of Kidney Failure I have a opportunity MOST men do not, I am a stay-at-home dad, I am VERY active in my sons school, I am currently one of the Vice-Presidents of my sons PTA, I am the Yearbook chairman, volunteer in the class every Thursday, all morning, and now I'm the schools Historian. I LOVE being a stay-home dad and would not give that up for the WORLD. If given a choice to go back in time and change my fate, if it meant losing what I have now, the answer would be a undisputed NO! and I have been on hemo for almost 13 years STRAIGHT! I HATE my illness but I love my life.

And I most definitely don't think (as you do) my life is PATHETIC. This is my life, to me, it's what I know and to me that's Normal.

So please point out where I was "very rude" and "focused on the negative".

- Epoman
Owner/Admin
ihatedialysis.com
ihatedialysis.net
ihatedialysis.org
Father
Husband
Dialysis Patient

No comments,  I'm very surprised.

- Epoman

[Sara]

No comments,  I'm very surprised.

- Epoman

Here's one...I'm very glad to see your outlook has changed.  I remember how it was when I first joined the site.  I'm happy for you.

[Epoman]

No comments,  I'm very surprised.

- Epoman

Here's one...I'm very glad to see your outlook has changed.  I remember how it was when I first joined the site.  I'm happy for you.

  what are you talking about  Nothing has changed. What gives you that idea? Dialysis sucks, and I hate it. I do wish I was dead sometimes and I can't stand the fact that I live this way. But it is ME and I do what I do to survive. I have ALWAYS loved my wife and my son, and I have ALWAYS loved being a dad, and I always will. However, my outlook has not changed one bit, I know kidney disease is going to chip away at any strength I have left until it finally beats me. And then I will finally have peace. So please explain to me some examples of how my outlook has changed since you first joined. It's true I have done some good things with my life, and I have excepted my fate (no matter how much I hate it) many years ago, however I still do and ALWAYS will hate dialysis. Which is why I named this site the way I did. But please show me where I have changed my attitude since I first started this site? You said "you remember my outlook when you first joined" please elaborate how was my attitude different than now?

- Epoman

P.S. I mean no disrespect to you in this post, I am just curious. 

[Sara]

Because back then I remember you talking about ending it as soon as your son was done with school.  I've noticed a difference pretty much since you started posting about the at-home dialysis - that new machine.