Honest Reason for NOT wanting a transplant

[Adam_W]

Gee, like everyone else here (except one) has basically said, WHY THE HELL ARE WE FIGHTING ABOUT THIS? All forms of treatment have their pros and cons. Aren't we all supposed to be friends here? Even though I'm not trying for a transplant now, I congradulate every one who gets one, and I look forward to hearing/reading about more. It may be something in my future, but just not now. sorry about any misspellings.I'm trying to type with a broken wrist.

adam

[okarol]

I like this thread. It makes me think. My daughter did hemo and transplant, so I personally have witnessed the difference in her. Everyone is unique and I love that we have so many bright, passionate and interesting folks to share their ideas.

[flip]

I still love you, Meinuk. You express yourself very well  and I'm in total agreement. Life is too short to sit around worrying about statistics and probability.

[Wayne]

This has been an interesting thread.  It seems that I would prefer a transplant but I am not sure how much  of that is actually my decision or how much of that has been influence.  My neph has told me all along that because of my age, he would prefer me to have a transplant versus dialysis.  He has said how dialysis is so life changing.  I respect his opinion, and obviously I have never been through anything like this before, so I tend to lean on what he thinks.  My only issue is now that I am at 9%, I feel ok, but I have no freaking energy.  If I do anything that is physical I need to sleep for a couple of days.  I have already had a fistula put in but he doesn't mention a timeline on when we might want to start dialysis.  When you ask, he says well, it really depends on how you feel.  Well, that is fine, but at what point do I say well, I guess it is time.  Again, I feel ok but it would be nice to have some energy again.  Of course, who is to say that a transplant will fix everything?  I sure don't know.

[Zach]

Interesting little discussion.

[Bajanne]

This discussion just points out one of the wonderful things about IHD - we are family inspite of our differences.  And differences we do have!!  Okarol, I have always shied away from expressing my views against a transplant exactly because of the difference I saw the transplant made to Jenna.  We were with you guys all the way from before the transplant and I know that it changed her life.
It is great that we can be free to express our varying opinions.  And I don't think anyone is 'right', nor is anyone 'wrong' (except for me of course: I'm always right! )

[donnia]

  I, of course, am for transplantation.  I am 36 years old with a 14 year old step daughter and 3 nephews who are basically mine ranging in age from 6 -16.  I just want to see them all grow up and have families.  I was pretty sure I wasn't going to make it that long on dialysis.  Tomorrow is 12 weeks post tx from a live donor, my hero.  I have been off of dialysis for 12 whole weeks and it has been great!!!  Yes, I do have alot of medicine to take... and no, they are not at all pleasant.... I do fear rejection..... I am scared that I might get an infection......but, it is better than dialysis.   

With this said... I totally respect those who opt to not to get a transplant.  It is your life and your choice.... only YOU know what is best for you.  I appreciate your opinions and feelings.  I wish the best for everyone 

Oh... and on a side note... negativity sucks!

[Lucinda]

This has been a really interesting thread but at the end of the day, the decision is YOUR decision.  There are pros and cons to all treatments and we all choose what we believe is best for us.  Personally, I don't want a transplant but then again I haven't started dialysis yet so I might well change my mind.  If I do, then that is fine.  Originally I wasn't going to have a transplant or dialysis and again that was a decision I made.  It is your perogative to change your mind whether male or female to make whatever decision at whatever time to treat yourself in exactly the manner you choose.  You don't need to explain that decision to anyone.  Your way is not the right way or the wrong way but the only way for you at the time. There is no perfect solution to renal failure and we are lucky enough to have choices.  It really is your lifestyle choice and yours alone.  Nobody else could or should make that decision for you.  Whichever way you go I jush wish everyone quality and quantity of life. 

[Joe Paul]

Life is too short to sit around worrying about statistics and probability.

I been idle watching and reading this thread. There have been good "arguments" for, and, against transplantation. Bottom line is which ever treatment we choose, it only prolongs the end result, which is death. PD, hemo, home hemo, NXstage or transplant, like it or not, in all actuality we died when our kidneys failed, our "normal" lives lost when we decided on which form of treatment we chose. As of then, we became statistics, Ginnie pigs if you will, testing various forms of life support. Amen to all of us, we are the future of the millions of people who have yet to find out that their lives will change as they knew it, and enter the world of ESRF.
* My apologies if I have offended anyone, by using the word death*

[pelagia]

Debate on an issue as difficult as this one helps us to think more deeply about how science, medical ethics, role of personal choice, and more influences our lives.  As far as I am concerned, these sorts of dialogues are healthy and useful.
 
This forum brings together people who might not otherwise have a chance to interact and debate.  Sometimes there will be "cultural" clashes.  Try to take the long view.  Diversity makes us stronger.






 

[stauffenberg]

I must confess I don't understand the attitude which says that since the decision is ultimately each person's free choice, we somehow shouldn't argue forcefully for which treatment is objectively better!  Some people might prefer living in the gutter as cocaine addicts while others would rather be missionary surgeons saving people's lives in Africa, but just because it is in the last analysis at matter of individual preference which you pick does not mean one is preferable.

I think the decisive point for preferring a transplant to dialysis is the following.  Doctors are bound by the rule, 'primum non noscere,' a Latin translation of the Greek Hippocratic Oath, which states 'First, do no harm.'  If you were to go to a surgeon with the desire to have him perform a harmful procedure on you, he would be ethically bound to refuse.  However, with renal transplants, even though they cost about $260,000, take up scarce surgical team time and surgical facilities, involve a surgery with a 0.3% chance of death, and require toxic immunosuppressive drugs, any transplant surgeon in the world will perform a renal transplant for you if you meet the medical criteria and an organ is available.  But if that weren't a medically superior alternative to dialysis, medical ethics would require him to refuse the transplant.  Now since it is their entire life career to know what is beneficial and what is not in renal medicine, I have to assume that as long as renal transplant surgeons are performing transplants for people on dialysis, renal transplantation must be a superior alternative.

[xtrememoosetrax]

It's interesting, Stauff, how much respect you accord to the folks in the medical establishment when their viewpoint is the same as yours. All the rest of the time, you seem to think that they are incompetent, bumbling fools. 

[del]

Stauff I don't think anyone is saying we should not discuss this topic (argue sometimes!!!) just that we should all respect each others opinions.  I really like hearing people's opinions on the subject and their reasons for or against transplant.  I know quite a few people who have had a transplant and they have done really well with it. Other's however have had an awful time with side effects and they have said on times that they wish they had never had the transplant.  At some point hubby may decide a transplant is for him if not he will continue on dialysis and live life to the best of his ability. (and we do enjoy life and do all the things we want to do.)  I'm not saying that transplant is not a better form of therapy for most people but it is a personal choice that each person has to make for themselves.  Whatever the statistics are does not matter to a lot of people when they are making the decision. They have to choose what works for them and right now nocturnal home hemo is working perfectly for hubby. He doesn't need to take binders anymore. The only meds are vitamins, rocaltrol and a pariot for his belly (has nothing to do with dialysis).  He has more energy than most people we know. In fact we were up at 7:30 this morning (after being hooked to dialysis all night) and poured 1/2 of the cement floor in our shed that he has built this summer!!  I had a nap this afternoon - he didn't.    

[flip]

I just thought of another good reason....I would lose my big disability check every month 

[okarol]

I just thought of another good reason....I would lose my big disability check every month 

I think that's a big concern for many people, that and the idea that they will have no medical coverage 3 years post transplant. Ideally, with a successful transplant, you'd no longer be disabled, now healthy and ready to work, capable of full time employment that will provide income and insurance benefits. That's the gamble, I am praying it pays off!

[Zach]

Ideally, with a successful transplant, you'd no longer be disabled, now healthy and ready to work, capable of full time employment that will provide income and insurance benefits. That's the gamble, I am praying it pays off!

Just the facts:

Currently, 83% of transplanted patients will never return to work.

Clinical Transplantation
10 Jun 2003
The impact of patient education and psychosocial supports on return to normalcy 36 months post-kidney transplant
http://www3.interscience.wiley.com/journal/118886210/abstract?CRETRY=1&SRETRY=0

Hopefully, that will change in time..

[Adam_W]

I'm glad flip brought that up because that is a big concern for me as well. I have some other medical issues that have nothing to do with kidney failure (eye problems) that made it darn near impossible for me to get a job before I even had kidney issues. So for me, even withe a perfectly functioning transplant, the odds of me returning to work would still be pretty low. People, especially potential employers, see "eye problems" and they immediately assume that I'm totally blind. My vision isn't perfect and it never has been, but I most definitely am not totally blind. I hate feeling like I'm "mooching" off of Social Security, Medicare and Medicaid, but the fact is, I could not live without them.

Adam

[Rerun]

I'm in the same boat Adam.  I did have a good job, but I got in with the agency when I was 24.  Now I'm 47.  There is no way I could get a good job with benefits now.  I told my Nephrologist that if he gets me a kidney he better find something else wrong with me to keep me on disability.  I hate feeling that way also.  It is a matter of survival.

[willieandwinnie]

Len's is in the same position with Social Security and Veterans Benefits. Has us scared to death. We are just sitting here waiting for them to cut off his benefits. Didn't think of that when we got the middle of the night call. 

[stauffenberg]

As for the low rate of return to work after a transplant, it is worth factoring the age of patients into the equation, since most of those with renal failure are already older than average, and after spending many years waiting for a transplant are even older, so they may be outside normal working age.  Also, a frequently noted problem is that after people have been out of their careers for the 5 to 8 years it takes them to go from endstage renal disease through dialysis to transplant and post-operative recovery, they have been 'hors de combat' for so long they cannot break into their field again.

Contrast this with the data showing that of those patients of working age, only 30% actually do work while on dialysis.

[Deanne]

At my last neph appointment, my neph made a comment that I'm still pondering..... "Since you're going to need a transplant someday...." It came across like I wouldn't want to consider *not* getting a transplant and that it would be as easy as running to Walmart and picking out the right size and color to match my shoes. I don't know yet what I'll want with the time comes. I used to be adamently against a transplant because of the meds. I might be more interested now if I can get on a non-prednisone protocol, but it also depends on whether I'll be able to pay for the medications if there is still only a 3-year medicare limit on them, or if I'll be able to work to have insurance benefits that cover them. I appreciate this thread!

[Rerun]

When my kidneys failed at age 24 I could see nothing but the road out of there and the transplant road was my only choice.  I could NOT believe my friend Pam didn't want one.  She has now been on dialysis for 20+ years.  I would not trade my 17 wonderful FREEDOM years with my transplant for anything.  But, I know more now and I just am tired.  It is hard work and takes a lot of energy to make a transplant work.  All the lab visits, the worry when your creatinine goes up 1 point, the drugs and ordering schedule, the adjustment of drugs and on and on. 

I know I sound confusing.  I am all for transplants but I don't want another one.      Maybe I need to talk to Dr. Phil?

[Zach]

 

I know I sound confusing.  I am all for transplants but I don't want another one.

You don't sound confusing at all, you sound honest.  And that's what this particular thread is all about.

[Rerun]

I'm also in a different place in life than I was when I received my first transplant.  Then I was married and had my parents and his parents support.  Now I have none of them.  I do have other people, but not many and none as close.  So, I realize that it would be all on me.

[G-Ma]

Thank you all so much for your input into this thread.  I have enjoyed this.  BTW...at NxS training yesterday I was told that if I get a ...again with the transplant....that the American Kidney Foun or Assoc will help me pay for meds and insurance premiums...are any of you with tx seeing this or getting this ..help..