Go for that transplant!

[livecam]

Are you sitting on the fence wondering if a transplant is the right way to go?  Don't think about it any longer, get the ball rolling and get listed now!  Transplants work and they work very well.  A good transplant will free you from dialysis, the renal diet, the uncertainty, the lack of freedom, and in short will give you your life back.  How many life threatening diseases have a clear treatment option that offers so much?  Yes it takes some effort to get on the list and you may wait for some years before a kidney becomes available but so what?  Living donors seem to pop out of the woodwork when they find out someone close to them needs a kidney.  I didn't expect any when I first got sick but several did come forward during my time on dialysis.  Whether the kidney comes from a cadaver or a living donor your life is gonna be a whole lot better with that new kidney sitting in your hip. If you have doubts about transplant get listed anyway. When the time comes that you get the magic call you can always just say no.  They'll have someone else on the phone seconds later who will be glad to accept it.  So, you have nothing to lose and your life to get back to enjoy as you wish.  Talk to your renal nephrologist and social workers today to get things moving. 

TOPIC MOVED to this section - Bajanne\Moderator

[kevno]

The Doctors knew my Transplanted kidney was failing in 86 so I got put on the list then 2 years before my transplanted kidney failed. Got called once 91 never been called since. Been on and off the list because of operations and a heart attack. Back on the list again after my few months off because of my leg. Maybe I have been unlucky, every time I have been off the list I could have had a transplant

[angieskidney]

Maybe I have been unlucky, every time I have been off the list I could have had a transplant

Aww you can't think like that I too have been off the list many times but you just have to keep having hope that the day will come

[Ginger]

I am currently on 'hold' on the list since my PKD kidneys are super large and there is no room for a transplant until I have a nephrectomy. I got a call and was prepped for surgery when the surgeon examined my abdomen and informed me that my native kidneys were too large and there was no room.  He would not do a nephrectomy and transplant in the same surgery due to the increased complications that could occur. Now I am in the process of getting a hemo access placed and discussing timing for the nephrectomy so I can be reactivated on the list. Also trying to decide whether to have 1 or both kidneys removed.

[angieskidney]

I had to have my original kidneys removed because they were both infected but still have my failed transplanted one in because it does not cause any interference. When I had the infection in my abdomen (Peritonitis) I was temporarily taken off the transplant list for about 6 months. They do what is best because you don't want any complications when you get a transplant. Good luck with your nephrectomy!

[Epoman]

Are you sitting on the fence wondering if a transplant is the right way to go?  Don't think about it any longer, get the ball rolling and get listed now!  Transplants work and they work very well.  A good transplant will free you from dialysis, the renal diet, the uncertainty, the lack of freedom, and in short will give you your life back.  How many life threatening diseases have a clear treatment option that offers so much?  Yes it takes some effort to get on the list and you may wait for some years before a kidney becomes available but so what?  Living donors seem to pop out of the woodwork when they find out someone close to them needs a kidney.  I didn't expect any when I first got sick but several did come forward during my time on dialysis.  Whether the kidney comes from a cadaver or a living donor your life is gonna be a whole lot better with that new kidney sitting in your hip. If you have doubts about transplant get listed anyway. When the time comes that you get the magic call you can always just say no.  They'll have someone else on the phone seconds later who will be glad to accept it.  So, you have nothing to lose and your life to get back to enjoy as you wish.  Talk to your renal nephrologist and social workers today to get things moving. 

I'm sorry but "Transplants work and they work very well." is a lie, the statement should read "Transplants work sometimes and they can work very well if you are lucky" A transplant is a Crap-Shoot. I have seen to many people DIE from complications of a transplant, or have their new kidney work a week then reject.

And this statement: So, you have nothing to lose and your life to get back to enjoy as you wish. Oh man you have your life to lose, and what about the live donor who gives you a kidney? and it lasts you a week or a year? they lost a kidney, and with 1 in 9 Americans suffering from some form of kidney disease, most who don't even know it yet. It's a gamble for them as well. ALSO I have seen people who get transplants and WISH to GOD they never got it.

You are painting this very pretty picture like the news media portrays, "Wife gives husband her kidney, she gave him his life back" oh please, do you notice they never show a follow up segment years later? The bottom line is a transplant is NOT A CURE it is just another form of treatment.

Don't get me wrong many people have transplants and it works out GREAT for them but the truth is there are many more sad stories than happy stories. I am not trying to discourage anyone from a transplant, it's your body, your call, I just don't want a member coming on here and giving false hope, now both sides of the story has been represented.

You are one of the "lucky" ones.

[kevno]

I would like a shot at another transplant. Plus yes, I know the pros and cons of a transplant more than most. Seen it all. Just to have the chance to get free of this bloody machine. If I could I would have managed on CAPD forever without a transplant. But NOT on haemo. Some patients like you Epoman manage OK on Haemo, I do not. Hate it with a passion, if the needles were used again I could just quit tomorrow. Too many issues with Haemo.

[Epoman]

I would like a shot at another transplant. Plus yes, I know the pros and cons of a transplant more than most. Seen it all. Just to have the chance to get free of this bloody machine. If I could I would have managed on CAPD forever without a transplant. But NOT on haemo. Some patients like you Epoman manage OK on Haemo, I do not. Hate it with a passion, if the needles were used again I could just quit tomorrow. Too many issues with Haemo.

Yeah I've done real well on hemo  I have an: enlarged heart, 2 broken hips, wheelchair bound, severe osteoporssis, live in constant fear of clotting and a few other things, believe me kevno I hate dialysis too with a passion. But hopefully now that I am on NxStage (http://ilovenxstage.com) I will get feel better emotionally and physically.

I do look back and think sometimes "what if" but I can't change the past. 

[kevno]

No I did not say you have done really well on Haemo. I said you have managed OK, put another way, you have come to terms with haemo which is different. I can not even do that Epoman. You now have nxstage, nxstage still means just Haemo to me.

[angieskidney]

Are you sitting on the fence wondering if a transplant is the right way to go?  Don't think about it any longer, get the ball rolling and get listed now!  Transplants work and they work very well.  A good transplant will free you from dialysis, the renal diet, the uncertainty, the lack of freedom, and in short will give you your life back.  How many life threatening diseases have a clear treatment option that offers so much?  Yes it takes some effort to get on the list and you may wait for some years before a kidney becomes available but so what?  Living donors seem to pop out of the woodwork when they find out someone close to them needs a kidney.  I didn't expect any when I first got sick but several did come forward during my time on dialysis.  Whether the kidney comes from a cadaver or a living donor your life is gonna be a whole lot better with that new kidney sitting in your hip. If you have doubts about transplant get listed anyway. When the time comes that you get the magic call you can always just say no.  They'll have someone else on the phone seconds later who will be glad to accept it.  So, you have nothing to lose and your life to get back to enjoy as you wish.  Talk to your renal nephrologist and social workers today to get things moving. 

I'm sorry but "Transplants work and they work very well." is a lie, the statement should read "Transplants work sometimes and they can work very well if you are lucky" A transplant is a Crap-Shoot. I have seen to many people DIE from complications of a transplant, or have their new kidney work a week then reject.

And this statement: So, you have nothing to lose and your life to get back to enjoy as you wish. Oh man you have your life to lose, and what about the live donor who gives you a kidney? and it lasts you a week or a year? they lost a kidney, and with 1 in 9 Americans suffering from some form of kidney disease, most who don't even know it yet. It's a gamble for them as well. ALSO I have seen people who get transplants and WISH to GOD they never got it.

You are painting this very pretty picture like the news media portrays, "Wife gives husband her kidney, she gave him his life back" oh please, do you notice they never show a follow up segment years later? The bottom line is a transplant is NOT A CURE it is just another form of treatment.

Don't get me wrong many people have transplants and it works out GREAT for them but the truth is there are many more sad stories than happy stories. I am not trying to discourage anyone from a transplant, it's your body, your call, I just don't want a member coming on here and giving false hope, now both sides of the story has been represented.

You are one of the "lucky" ones.

You know what? I 100% agree with what Epoman has said here. If you are lucky to have a successful kidney you can't go tell everyone they should get a transplant based on a short period of time. I know .. I know .. Epoman has never had a transplant. BUT I have! So I feel I have enough experience (but not as much as some people here) to at least say that any site as popular as this people will come to for info, for advice, for encouragement. Yes a transplant is great! I had a great one! I lived 11 good years and no one knew I was a transplant patient because I was able to hide it extremely well! But you do have to tell both sides. Not to be negative, but everyone can only make their own but VERY INFORMED choice. And a transplant is only temporary! I am glad I didn't take the kidney from my mom because it turns out she now needs both or she would be on dialysis too ....... I am soooo glad yours is doing well. Tell us more about it. What medications are you on? How is your blood pressure now with this transplant? I found when I had mine my BP went back to normal! It was great not to have to worry about that anymore! And being able to eat what ever I wanted? Well I was on Prednisone so I had to be put on a diet so I would not gain too much weight.

Please give more info so for anyone thinking about a transplant can be well informed. I did NOT know about all the side effects of the medication I was on. Even though I would get a transplant again .. not EVERYONE will be a success. AND ALL TRANSPLANT FAIL EVENTUALLY! I was hoping mine would have lasted longer but ... oh well.. that is life! I just wish the doctors would NOT have downplayed all the bad and made it sound like easy as pie. That is the only reason I say this. I wish I would have known BOTH sides.

Good luck with yours and please .. share

[sandman]

You are painting this very pretty picture like the news media portrays, "Wife gives husband her kidney, she gave him his life back" oh please, do you notice they never show a follow up segment years later? The bottom line is a transplant is NOT A CURE it is just another form of treatment.

And I have also noticed that there is a huge chance that the live donor could in turn, suffer from kidney failure them selves but the media never talks about that.  The medical profession does not seem to want any perspective live donors to know about that until it's to late.

Also, Angie has told me that with drugs like Prednisone, that the user is highly susceptible to any every day illness ( like the cold or the flu ) that could mean a week in bed for a healthy person but could kill a kidney patient if gone unchecked.  Nothing is ever mentioned about this either.

[angieskidney]

You are painting this very pretty picture like the news media portrays, "Wife gives husband her kidney, she gave him his life back" oh please, do you notice they never show a follow up segment years later? The bottom line is a transplant is NOT A CURE it is just another form of treatment.

And I have also noticed that there is a huge chance that the live donor could in turn, suffer from kidney failure them selves but the media never talks about that.  The medical profession does not seem to want any perspective live donors to know about that until it's to late.

Also, Angie has told me that with drugs like Prednisone, that the user is highly susceptible to any every day illness ( like the cold or the flu ) that could mean a week in bed for a healthy person but could kill a kidney patient if gone unchecked.  Nothing is ever mentioned about this either.

Well, what I meant when I tried to explain it to you is that the medication each transplant patient is given is to purposely lower our immune system so that the body's natural defenses don't kill off the transplant. But with that in mind, with a lower immune system our bodies don't have as high of a defense to fight against colds or the flu and can even get chicken pox a SECOND time around.

[Riki]

You have to go for what is right for you... not every transplant works.. sometimes they fail right away.. sometimes they never work.. I've had 2 myself.. so I know the ups and downs... my first kidney lasted 8 years.. and had 3 bouts with rejection.. 3rd one did it in... second one only had one bout.. after only 3 years... actually had another bout of acute rejection in my first transplanted kidney over christmas.. something I didn't know could happen while you were on dialysis... as for a live donor, I've decided that I don't want to put anyone I love through the pain of the operation... I'll wait my turn.. been waiting 2 years now..

[jdat]

There's very little I could possibly add here.

BUT keep in mind that neither technique is perfect ( transplant or dialysis), and both are full of pros and cons.


It seems like so many people forget that.

[angieskidney]

Very true, jdat! Very true

[livecam]

I had to write my post as I see the issue and the only experience I have to draw on is my own.  My quality of life on dialysis was better than that of many.  I kept my job and in fact was putting money in the bank the whole time.  We traveled, not as much as before but we did do some cool things despite my being on dialysis.  With that said though I considered my life totally f...ed up.  I hated dialysis totally and completely. I can think of nothing else so close to imprisonment than dialysis.  I didn't feel normal and the side effects of dialysis were a hundred times worse than anything I've experienced after the transplant.  You could say I was an extremely motivated prospective transplant patient from day one.  My kidney came from a cadaveric donor, someone who passed away so no living donor was hurt in the process.  I'm not on Prednisone although I was and it was eliminated later at my request.  Many transplant protocols now don't use Prednisone or other steroids at all so that need not be a major concern.  I know that this kidney may someday fail and likely it will but the time I've had with it has been precious, in fact it has been a total blessing.  If this kidney ever does fail I'll be on the transplant list before starting dialysis again.  Yes there are less than optimal outcomes but instead of all the negative stuff I've seen here look at the statistics...one year survival rates following transplant at most centers are in the high 90% range and thats survival rates that include everything from car accidents to transplant failure.  I'm going to continue to aggressively promote transplantation because of what it has done for me.  I remember fellow patients who couldn't make up their minds about what to do.  Their indecisivness cost them additional years on dialysis when they could have been transplanted and gotten their freedom back. The decision about whether to go or not to go for a transplant is a personal one.  You know which one I'm gonna promote.

[BigSky]

I'm sorry but "Transplants work and they work very well." is a lie, the statement should read "Transplants work sometimes and they can work very well if you are lucky" A transplant is a Crap-Shoot. I have seen to many people DIE from complications of a transplant, or have their new kidney work a week then reject.

Actually most transplants work out very well.  Graft rate at one year on average is 96%.  That is pretty good considering 1 year survival rate of a dialysis patient ranges from 72-78% depending on medical conditions.

Myself I have seen far more people die on dialysis than have from complications of a transplant.

My transplant lasted 12 years and only had an episode of rejection once and that was in the beginning. 

Each person is different and needs to do what is right for them.   That is to weigh the risks and benefits of both.  A transplant may be a crap-shoot but so is dialysis.

Its all about which one you feel better rolling the dice on.  Transplant or dialysis. ??

[goofynina]

Today i called a friend who i used to go to dialysis with.  Since i have started PD, i pretty much lost touch with him.  I was talking to a very good friend of mine who i used to go to dialysis with.  Thank God for Frances, she was my Godsend.  We sat next to each other when we were at the local clinic, and when it closed down, we were lucky to get to spots at the same time so we can continue to be together.   I called her today and we were talking about Sylvester, our friend that we havent seen in awhile,  she has since came back to this clinic but all of the patients havent been transferred back so we were worried about Sylvester, so i called him,  come to find out, he had his transplant on June 29th.  I am so excited for him.  To hear him talk about how good he feels makes me think twice about my decision of not having one.  It's not that i dont believe any of the stories that any of you have told, i love to read them and i am happy for you all, but for someone that i know personally to talk one on one and pretty much give me step by step details, makes me what to have the feelings he got when they called him, when he got there, when it was over and now that he is home.   It went so well the dr. are very pleased with his progress.  He said when he woke up, he instantly felt better.  The only problem he had was drinking all the water they wanted him to drink, he said he just couldnt keep it down, but he's not having any problems now.  So if i may your honor, i would like to withdraw my decision of not having a transplant to working my ass off for one.  I know what i got to do and with the help and support of my friends and "family" here and at home, i know i can do this.  My donor is still waiting for the day he can stick his "organ" in me, lol,  that is just an inside joke we all have, him, his wife (my best friend) and myself.  Now i just hope it all works out for the best for all of us, but i am going to go for it.  Wish me luck,  Watch out people, goofynina is on a mission and i want to take you with me on my journey.   Well, i need to take you with me, cuz i dont think i can do it without all of your support.  Love to you all.......

[coravh]

My transplant experience (in 2002) was very difficult and it is only recently that I am reaching my full potential, almost 4 years later. That said, even all the bad stuff was still much better than dialysis for me. OK, the first 3 months were about even, but after that I was always doing better with my transplant.

It is true that some transplants do not work, but the majority of them work quite well. I believe the average longevity of a graft these days is over 10 years. Also, there have been a number studies done in Scandinavia that have shown the lifespan of the average patient with a transplant is as much as 3 times or more the expected lifespan of a patient on dialysis. There is also a lot of talk about immunosuppression. You need ot keep in mind that you immune system is suppressed, and doesn't respond as well, but you still have an immune system. The thing is that if you are on dialysis, you probably don't have a completely normal immune system either. As a matter of fact, I get less sick now, than when I was predialysis and on dialysis. My Mom had the flu a couple of years ago (when I was on more meds than I am now) and I took care of her while she was sick. I didn't even get a sniffle. And thanks to the fact that some centers are going the route of steroid avoidance, you can skip many of the side effects. From what I have seen, the bulk of the side effects come from prednisone.

There are risks to anything having to do with kidney failure. It comes down to a matter of personal choice. You had to choose what mode of dialysis you wanted to do based on how you felt about it. Both hemo and PD have risks. The same holds true for a transplant. Maybe you can't stand the thought of surgery or a foreign organ in your system or maybe  you don't want to be on a strict regime of pill taking. But the facts don't really support any suggestion that a transplant is more dangerous than dialysis.

Cora

[coravh]

I reread some of the previous posts and just noticed the one concerning donors. I don't believe that there is a huge risk for donors. I know approximately 50 donors. Some made their donations almost 20 years ago and not one of them has kidney failure or other significant problems due to their donation. Yes, some have cancer, but breast and prostate cancer are not linked to kidney donation.

A lot of this fear of donation is generated by the media. Here in Canada there is a very subtle campaign against donation. So called medical "ethecists" suggest that patients who might become possible donors are treated differently in emerg - which is such a disservice to the dedicated professionals who work in ERs. There are also always suggestions about the serious "risks" of donation, but of course they never get specific. We have one of the lowest rates of organ donation in the world and I think a lot of it has to do with the proliferation of rumor and innuendo by the media.

Cora

[Rerun]

Good Luck Goofynina.  As I've said before, my 17 years with a transplant was wonderful.  It was when it was going down that I had a very very hard time.  But, just enjoy it while it lasts!  It was worth it.

[jdat]

I reread some of the previous posts and just noticed the one concerning donors. I don't believe that there is a huge risk for donors. I know approximately 50 donors. Some made their donations almost 20 years ago and not one of them has kidney failure or other significant problems due to their donation. Yes, some have cancer, but breast and prostate cancer are not linked to kidney donation.

A lot of this fear of donation is generated by the media. Here in Canada there is a very subtle campaign against donation. So called medical "ethecists" suggest that patients who might become possible donors are treated differently in emerg - which is such a disservice to the dedicated professionals who work in ERs. There are also always suggestions about the serious "risks" of donation, but of course they never get specific. We have one of the lowest rates of organ donation in the world and I think a lot of it has to do with the proliferation of rumor and innuendo by the media.

Cora

I posted this thread a while back:
http://ihatedialysis.com/forum/index.php?topic=794.0

It's about a show CNN did on live organ donation.
The main issue at this stage and what really concerns me is that there seems little to no follow up of the donors, and no real long term studies. Now that is from the United States point of view.
I'm not sure how much it differs here where I live in France, or for other countries around the world.

[livecam]

The CNN show I think was called "Body Parts" and we watched it too.  The whole premise of the show was that organ donors get messed up and forgotten once they've completed the donation process.  The show in one word sucked.  It was really all about sensationalism aimed at getting people to watch, and keeping their ratings up.  It was a piece of journalistic crap.  We were fooling around in the kitchen the other day talking about what would happen if I needed another kidney and my wife say's something to the affect that I wouldn't need to worry because our daughter could donate.  Well our daughter was part of the conversation and said "no way, remember that TV show, kidney donors are harmed and ignored after they donate".   I really wonder how many potential donors were scared off by CNN's trash production.  While a few people have had problems attributed to organ donation the vast majority haven't.  Thanks a bunch CNN from the people who won't be helped because of your on-air trash.

[sandman]

Well, from what I have been reading, there has been very little released documentation pertaining to long term studies about live kidney donors.  Seems that after the first year, the donors are forgotten about and all the following attention is focused on the recipient.  But seems that the general area of concern is that the donor has been reduced to 50% of normal kidney function and that there is no way to accurately predict how long someone could keep going normally when put in that situation  Or, if the donors themselves would be looking at possable kidney failure in the future because they donated and would not have had any problems if they just kept it.

Also, there is a huge emotional factor involved with live kidney donation that simply can not be ignored.  There is a chance that the kidney, the donor gives to a good friend or loved one, could fail or cause serious, unforeseen reactions to the recipient and the heartache and anguish that follow, could be to much to handle.

But what everyone seems to agree with is that the best way to go about donating your kidneys ( or other organs ) is to just sign your donor card.  Which I have done without hesitation.

[goofynina]

Geeee, thanks guys,  since i have a living donor and he is a very good friend of mine, well, after reading all this, now i am having second thoughts,  oh well, it was nice while it lasted.... great support guys