I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Lillupie on January 09, 2012, 02:24:58 AM
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there are people I keep hearing about who are not on any of these formns who have died after a transplant. Now Im somewhat scared because if Im doing ok on dialysis, if I get a transplant, am I going to die?
First, look at Karen547, she was young, and months after she got a transplant, she died.
A woman my mom worked with her husband had ESRD, got a transplant, and months later he was on a coma and died.
Did fine on dialysis and then died after a transplant.
My friends dad died earlier in 2011. He actually went to my center. He did really well years on PD, and a week after he got a transplant, died.
Is this what is going to happen to me too??? And what causes people to get a transplant and then die?
Lisa
EDITED: Moved to proper section Transplant Discussion - Sluff/Admin
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Any type of transplant is radical surgery and there are many things that could go wrong. A very good friend of mine had a liver transplant 2 years before I got mine. He died just short of 6 months post-op. I was scared to death that the same would happen to me. I looked at the overall statistics for liver transplant survival. The odds were very much in my favor. Did this mean that I no longer had any fear? No not at all. I was still worried but not as much. I had spent many hours with my friend riding our Harleys, bar-be-ques at each others house, just being around each other all the time. These people you mention in your post were known to you so that makes it that much more real to you. The stats are what they are though and that is highly in your favor for survival from a kidney transplant. With that said there is always the possibility that something could go wrong. You have to decide for yourself if it's worth it to you.
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Also. the same rule applies to dialysis. There are many long term survivors on dialysis and many who do not survive nearly as long. Certainly in every situation, age and other medical conditions can play a factor in survival as well.
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Dear, dear Lilluppie I think lots of us here understand your fears, but what the previous writers write is really true, nobody is a statistic, so the best thing you can do is think that its probably going to be okay. The chance you die on dialysis are statistically higher than dying with a transplant. I'v had a transplant when I was young :bandance; and now on D for 14 yrs, and doing okay on that But I would sooooooo much want a transplant. Just live by the day, good luck girl
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My grandmother died a few months after getting a kidney transplant in 1982. Her immune system was so suppressed that she got an intestinal infection that meant the removal of several feet of intestines. She didn't recover from that operation. She felt pretty bad for a few months beforehand but thought it was a new normal. It wasn't. Meds have come a long way since then, but you still have to watch out for infections.
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My husband died after a little less then 3 years on dialysis......did not make it to transplant....he got pneumonia after yet another fistula surgery. So you never know- I think his chances of survival would have been much better with a transplant.
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I worry about this, too, but figure the numbers are in my favor. Statistically, isn't it about 99% of people who do fine afterwards? Things can go wrong, sure. It makes me glad in a way that transplant centers are such *sses about pre-transplant testing and some of their requirements. Sure they're doing it for their own benefit to make their statistics look good, and in some cases they go overboard and are control freaks about things they shouldn't control, but it gives me a sense of greater confidence that they wouldn't touch me if they thought I wouldn't be in the 99% of people who would do well.
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Lisa,
Surgery of ANY kind is a risk. Transplant is a risk for live donors. But one must truly look at the over-all statistics and understand that they represent the big picture.
Those of us on this forum know so many folks who have had successful transplants! But it is the unsuccessful ones that stand out.
It is wise to consider all options. But don't let fear paralyze you.
:cuddle;
Aleta
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I agree with Aleta. Every surgery (even cosmetic) is a risk. People die after liposuction. That is why they test you 6 ways from Sunday to make sure you are as healthy as you can be pre-transplant. Basically, the life expectancy stats are much better for transplant patients than for dialysis patients. But you can't go by stats. Some folks live wonderfully well for decades on dialysis, others do not fare well. I have had my new kidney for over 9 years and wouldn't hesitate to have another surgery. I was dying on dialysis. I'm sorry you know so many that didn't make it. I know many transplant patients and all were fine. Some rejected sooner than others, but all survived well. Try not to let fear of the unknown stop you from making a decision.
Cora
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Is this what is going to happen to me too??? And what causes people to get a transplant and then die?
I nearly didn't make it through mine. It's a huge surgery, and it comes with some huge risks - just like any surgery. As for what causes it - the list of possibilities is pretty endless, although I'd guess infections are probably a huge part of it, thanks to the immunosuppresants.
Again, it's a treatment for ESRD, not a cure. It comes with risks, just like dialysis. There's no way to answer the question about if it's going to happen to you too. It might, and it might not. Plenty of D patients refuse to take the risk because they prefer the risks they already are familiar with on D. You have to decide if you are willing to risk it. If it works, the rewards are wonderful.
Personally, I think if you aren't scared of the risks, then your doctors haven't done a good job of telling you about the realities of transplants. A little fear is a good thing - it makes you cautious with your health and makes you protective of your transplant. But don't let it paralyze you. Consider the risks and the benefits and make an informed decision that's best for you.
And remember, if you get on the list, but aren't mentally ready to take that risk when the call comes - you can turn it down. But there's no harm in getting on the list and accruing wait time until then.
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I was in a similar situation as you but different roles...When i was on D i felt several times that i seen "the light"when my BP would drop so low that i would pass out so the tech could "pause"the D machine the slam me full of saline to "bring me back"and I also learned not to make friends at the center as i made them they would die,I would ask my tech that day ..How is Mr or Mrs so and so? The reply... they passed yesterday!! This went on for a bit until i lost 4 friends i said no more. after that i kept to myself and done my time until tx..Like previous post don't worry about stuff you have no control over....God Bless!!
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I think a lot has to do with your health when you have your transplant. I was in my early 30s, and even though I was diabetic, I was in fairly good health. My kidney lasted 21 years. I had ups and downs, but I ran a company, raised two kids, travelled the world, and rode Harleys.
The kidney is long gone now, and I'm in my 50s. I don't want to risk it now.
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As to death after a transplant, it could be infections, cmv and other health issues. For every handful that die, the majority live.
Johns Hopkins released a study regarding life span on dialysis. 1/3 of dialysis patients are alive after 8 years. My husband already showed signs of heart issues after 1 year on hemo. 9 months post transplant, his heart has returned to normal.
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That's so good to hear Lawphi! :2thumbsup; :2thumbsup; :2thumbsup;
Carl goes in for his 1 year check-up tomorrow. :clap;
Aleta
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Hope Carl gets a great report! Who would have thought how much our lives have changed in the past year.