Honest Reason for NOT wanting a transplant

[G-Ma]

Come on everyone, jump on me......Am I the only one in this world that is NOT going to pursue a transplant?  I know it's just another "treatment", therefore I choose NOT to put my body into another cycle of ""up and down"" roller coaster rides.  It is on a somewhat smooth ride and I choose to keep it this way.  Everytime I walk into the Dr's office I know the first question out of his mouth is going to be...Can I put you on the tx list???  NO NO NO, and you wonder why I don't want to go to the flippin Dr. Is he getting a cut??? ha ha...am I another notch in a belt??   

[twirl]

I have thought about that also
my husband thinks I will get a transplant and everything will be wonderful
well, it was not wonderful before the transplant so what are the odds........
I may never fell the same again -- health wise
and it is a big surgery
and I am afraid
and what makes me think I will ever find one
and
I am afraid
so afraid
but sick of D
maybe that is why I have a hard time losing
20-30 lbs
I get close and then get afraid and then gain some again

[G-Ma]

hmmm twirl...is that me talking?  oops, no husband but a special other who feels the same way....let them get the transplant? how about it and you and I will go to the Bahamas.......   

[Rerun]

I have a friend who started dialysis at 34.  She has been doing hemo at home for 20+ years and has never wanted a transplant.  She does well on dialysis and never wanted all the side effects of the drugs, which there are many.  She is saving a transplant as a last option.  She doesn't want on the list because you have to keep up on all the tests like mammograms, pap, heart etc..

I have had a transplant and it went well for 17 years.  When it died a big part of me died too.  I couldn't keep my job and had to move etc... all the stuff I've already whined about here on IHD.  

I frankly don't know if I want another one.  It is not an easy road and I don't think I could go through losing another part of me.

You could just go on the list to shut everyone up and if you get a call just decline it.  Maybe when you are ready someday you'll have enough time on the list to be called quickly.   Just a thought.  Good luck on your decision.

[Adam_W]

Count me in on the "no transplant" list. I don't want one now  because of those exact reasons, and I get so sick of it when people (mostly medical professionals and some family members) keep saying I should get one. Sometimes I think people forget that it's MY decision and I want to do what I'M comfortable with. I don't care what "statistics" may say, I'm simply not ready to go through all the risks and side-effects of a transplant right now.

Adam

[G-Ma]

Oh Adam, let's not even mention statistics...I am so sick of hearing those numbers spouted by all the people whose kidneys work just fine.

[Meinuk]

To transplant or not to transplant has been a huge debate both here and on other parts of the web.  I never thought that I'd go for a transplant, the thought of steroid therapy freaked me out, and when rejection finally comes (and I have no doubt that I'll reject) I think that I will have the same feelings as Rerun.  But - back in 2005, I decided that I would go on the list.

And now 3+ years and one phone call later, I am still waiting.  I won't accept a living donor, but I will gladly accept a cadaver kidney.  I know that I will be trading therapy for therapy, but I am excited at the thought of traveling again.  (NxStage is not good for international Travel, and with the dollar so weak, I can't afford to pay for dialysis)  I see a transplant as a ticket back to Europe.

Dialysis modality and Transplant are an individual decision - The most important thing is that we strive for our best personal health so that we can enjoy the life that we have as survivors, whether that means hooking up to a machine or popping a boatload of pills as long as we are doing what is right for ourselves, as far as I am concerned, all is right in the world.

And, just to stir the pot, there is a study out there that shows short daily dialysis rivals a cadaveric transplant!  http://www.billpeckham.com/from_the_sharp_end_of_the/2008/05/daily-dialysis.html

[G-Ma]

Oh yes meinuk...I would NEVER accept a living donor and people look at me as if I have two heads when I say that.   

[kitkatz]

Welcome to my little corner of the universe!
I cannot get a transplant even if I wanted one.
So here I am on dialysis for life.
I hope I survive this! 

[flip]

I'm also not on the transplant list. I think I've already listed my multitude of reasons on an old post and I don't think anybody wants to hear them again.

[Ang]

i  would  take  a  transplant  each and  every  time  that  its  offered,be  extremely  lucky  to get  1,  but  you  know  what  i  mean,
all  the  steroids  have  got  to  be  better  than  this  d  crap.
anything  that  will  return  my  life to  normality  for  months  or  years  i'm  prepared  to  gamble  on.
i  will  never  understand why  someone  would  not  want  a  transplant,but  each  to  their  own

[Bajanne]

I don't like to talk about not wanting a transplant, since we have so many happy stories here, and I rejoice with each member of our family who has been able to get one. 
I personally feel that a transplant would be far more challenging for me than dialysis.  First of all, it would take so much engineering.  there is no list here, and I would have to have so much put in motion between countries.
Secondly, since there has been some kidney failure in my family, I would never take a kidney from a relative.
thirdly, I have great concerns about dealing with the immunosuppressant therapies, and the need to have an extremely sterile environment.  Not sure I could guarantee that.
I would love the freedom that a transplant would give, however shortlived, but right now, though I hate dialysis, i appreciate that it is keeping me alive to see my grandson grow up.

[del]

Hubby is not on the transplant list and does not want to be. Mainly because of the drugs. he is doing so well on dialysis that he really doesn't mind. (not that he loves dialysis)  I am a 1 antigen match but he refused to take a kidney from me.  One neph kept asking him about going on the transplant list until hubby told him not to ask anymore and he would let the transplant team know when HE was ready to go on the list!!  The other nephs that he sees have not pushed it at all .  They are just amazed at how well he is doing. This month is 11 years on dialysis!! Another reason for not wanting a transplant is that he feels so good that he is afraid that he may not feel as well with a transplant when he has to take all the drugs and deal with side effects and having his immune system shut down.  For some people transplants work really well while for other people they are not as well as when they were on dialysis.

[KT0930]

Maybe it's because I got my first transplant at such a young age and it worked so well for so long that when I went back on dialysis each time, there was never any question in my mind which route I would choose. Personally, dialysis is simply too much to deal with on top of everything else that goes with being a mom. I have been able to do more for my son in the four months that I've been active since transplant than I did the whole 18 months I was on dialysis, and we haven't even gotten to the busy time of year yet!

However, that is my life. It's not G-Ma's or Adam's or Rerun's or anyone else's life on here. I won't pretend to understand why someone would choose dialysis over transplant, but I'm not going to try and change anyone's mind about their treatment, either. If they're happy (as happy as you can be with kidney disease, anyway!), then that's all that matters.

[twirl]

G-ma let's go    I heard dialysis on the beach is really the place to be

[twirl]

Flip Bob
I want to know your reasons       you are always so positive and such a good --  I don't know what but you are good
why
me - I am afraid
and my twin will not give me one anyways
my mother filled out papers for a kidney and turned them in and that was a thursday and she got one the following tues and she died
so
where is the post so you do not have to type all that again
cheryl

[flip]

Okay, here goes....

1) my age
2) the hassles of more surgery and a ton of meds
3) I do okay with dialysis
4) about half of cadaver transplants fail within two years
5) I won't be considered cancer free for another 4.5 years
6) I'm HCV positive (got it in the dialysis center)
7) I have a house, a business and critters to take care of

If I was much younger, I'm sure I would go for it. Right now, I'll just be content to enjoy life for as long as I can.

[G-Ma]

I ""died"" in recovery after the last major surgery I had, was restored and spent 3 days I think with not a clue who I was or who anyone else was and lost some memory..the kids were fantastic but I don't want to even think about putting them through that again.  I knew I finally was making it when my son bent over to tie his torn shoelace and I told him it was time to replace that crayon......yes I did move words around..old Webster was spinning I'm sure.  The "drugs" are another part...so I get help paying until I'm 65 and then have to stop them....that's when ins quits and my check becomes half of what it is now so have to save now so I can pay for binders at that time.  It's wonderful having ESRD and being "disabled" from a corporation..ha ha. NOT...

[twirl]

I am surprised at people feeling some of the same things I do about transplants
I take enough meds now
I hear the transplant drugs are very expensive
and I do not care about having fund raisers
I just don't know
but
it is nice to know other people are unsure

[okarol]

I am surprised at people feeling some of the same things I do about transplants
I take enough meds now
I hear the transplant drugs are very expensive
and I do not care about having fund raisers
I just don't know
but
it is nice to know other people are unsure

Jenna takes 2 meds that are immunosuppressants and are essential. Other things are just vitamins and aspirin. It's alot less since she no longer has high blood pressure or any of the other problems on dialysis.

[pelagia]

transplant stats from UNOS

[Loretta]

I don't want a transplant because medicare will only pay for meds for three years.  Then how  I would pay for them?  I also had cancer removed in April.  I was in a coma  six days and almost didn't make it.  I will not even consider a live donor.  I once had two working kidneys, then for years had one working kidney and now just have one non working kidney.  I would never put someone at risk of living like this.

[twirl]

meidcare only pays for three years ----- oh no

[flip]

there is pending legislation to increase it

[sickofbeingsick]

I don't want one for the same reason a lot of people here don't G-Ma--the drugs. Plus I do okay on dialysis--10 years now. I read that some of those anti-rejection drugs can cause cancer on top of everything else. Half my family died of cancer on my mother's side; she's had it twice already so I'm predisposed to it so NO THANK YOU. Why jump out of the frying pan into the fire?