ADVICE

[Sandi1313]

Hello dear friends,
My boyfriend Thomas & I would like some ADVICE.Recently we were told that I've a very SLIM chance of SURVIVING any kidney transplant.The odds are 98%percent of NOT SURVIVING any kidney transplant to 2%percent of surviving.We REALIZE that a kidney transplant  is NOT for everyone.WHAT would YOU DO?If you had to make a CHOICE.
Sincerely yours,
Sandi

[Deanne]

Why did they tell you this? I'd have to consider their reasons for making this kind of statement and start my decision by getting a second opinion. All doctors and all transplant centers aren't alike. Someone else might say something entirely different. Don't give up hope yet! Get more information.

[obsidianom]

Cant give any advice without a LOT more info about you.

[jeannea]

That's hard. Not knowing why you won't survive, here's my advice. How much do you value the life you're living? Do you want to be alive even if it means dialysis all the time? This is something only YOU can answer. Not your boyfriend, not your mother, etc. It's a very personal decision. I probably would take the long shot because I really hated dialysis. But that's me. I would get a counselor and talk through the issues.

[dialysisuser82]

Hello dear friends,
My boyfriend Thomas & I would like some ADVICE.Recently we were told that I've a very SLIM chance of SURVIVING any kidney transplant.The odds are 98%percent of NOT SURVIVING any kidney transplant to 2%percent of surviving.We REALIZE that a kidney transplant  is NOT for everyone.WHAT would YOU DO?If you had to make a CHOICE.
Sincerely yours,
Sandi


Hi Sandi, did they explain the reason?  Usually doctors would encourage kidney patients to be on the transplant list. The Choice is yours. Do not rush in your decision.

It is funny how I am on the opposite direction. I have no interest in transplant.  I am comfortable with in center dialysis and it has been 32 years.

[Michael Murphy]

I would like to tell you about my reaction to bariatric surgery,  several years ago my GP was pushing me to have weight loss surgery so I went to a presentation at a major hospital near me.  When the surgeon got to surgical mortality he said it was 2 %.  I got up and left the room because it hit me that if I was boarding a plane and was told the odd of arriving safely were 49 to 1 I would not board the plane.  I passed on the surgery cause the odds did not make good sense to me.
Your odds are just the reverse 1 to 49 not good.  I have been on dialysis for a little over a year and while "I hate dialyses" . It sure  beats the alternative. I am looking forward to long time on dialysis since I have reoccurring bouts of skin cancer.  But I know the best sunrise I will ever see is tomorrow's.

[kristina]

Hello Sandi,

Hello dear friends,
My boyfriend Thomas & I would like some ADVICE.Recently we were told that I've a very SLIM chance of SURVIVING any kidney transplant.The odds are 98%percent of NOT SURVIVING any kidney transplant to 2%percent of surviving.We REALIZE that a kidney transplant  is NOT for everyone.WHAT would YOU DO?If you had to make a CHOICE.
Sincerely yours,
Sandi

Hello Sandi,
such news appear to be devastating - until we get a second opinion and find out a little more about our situation...
Many years ago I was also told that a transplant would be no option - until I came across a nephrologist who told me
that I had a very good chance with a kidney transplant...
.. Years ago I was also told, that because of my fragile health I would experience great difficulties with dialysis,
also because I suffer from Systemic Lupus (SLE) and Mixed Connective Tissue disease (MCTD) and various other connected diseases...
.... and I was completely devastated, because I knew that I was in ESRF kidney failure
and I had no idea what could be done if and when my kidneys fail completely  ...
... but only recently I was told that my body could tolerate dialysis all the same, but that a transplant would be better in my case,
because it would keep my SLE/MCTD much better under control
and therefore give me a better chance, to avoid further devastating SLE/MCTD-flare-ups...

Research in medicine moves forward very fast these days, especially in nephrology and as an old continental proverb goes:

"Nothing is ever eaten as hot as it is being cooked..."

Good luck wishes from Kristina.

[Simon Dog]

98%percent of NOT SURVIVING any kidney transplant to 2%percent of surviving.

Unless you find a transplant team that disagrees with the 2% change of success, you are going to probably have a hard time finding a surgeon to do the work.   Also, it may be difficult to get a donor organ allocated to someone with such a low chance of success.

[cdwbrooklyn]

Do your research and get second and third opinions.  All doctors do not see things the same.  I remembered when I first started Dialysis; my primary doctor at that time told me that I would only live for five years on Dialysis.  I laughed in his face and told him he is not God and cannot make that decision for me.  It is going on 15 years and I am still kicking it strong.  I’m learning new things about dialysis everyday and it’s making my life better.  Don’t believe what one doctor says unless you heard the same thing from three other doctors.  Some doctors are heartless and think everyone that’s not 100% healthy will die.  Stay strong and keep your head up!!!     

[Charlie B53]

Sandi,  are you stable on dialysis now?

What are your 'other' health issues that make your surgery odds currently so poor?

Are your Dr's addressing these 'other' issues?

I am NOT on any transplant list.  My Neph had me try one of the immuno-suppressant drugs, it almost killed me, the reaction was very bad.

Transplant is NOT for everyone.  A great number of us are content to stay on dialysis, it works.

Be religious about your diet and health care, it will make a positive difference.

Ask questions of anything that doesn't make sense, or is not clearly explained to your satisfaction.

YOU, have to take the most active role in your health care, the Dr can order meds, and advise, but ultimately it is up to you to follow through.