Honest Reason for NOT wanting a transplant

[okarol]

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..

There's more info here: How to pay for life-long immunosuppressants http://ihatedialysis.com/forum/index.php?topic=4555.0

[RichardMEL]

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?

Rerun... apprieciate your input and story. It's interesting and I am so glad your transplant has lasted 17 years. that's amazing!!!!!

Just one small thought/comment on what you've written - and please understand I do not mean this as any kind of criticism of what you wrote or that I disagree (and since I have not had one yet I can't REALLY know what it's like) but...

Yes you have heaps of lab visits, and drug changes and so on.. but it's similar on dialysis. I mean OK the labs are done by my unit they take the blood from the machine when I am there, but it's still bloods, and medication is changed from time to time. I mean if you ask me it's probably not that much more complicated in transplant land as it is to dialysis. About the only thing I can think of off the top of my head is taking those immunosuppressant drugs at the proper times and not missing them (as opposed to binders which, well, you can get away with.. as an example).

You know though I *personally* (as in, just me, not anyone else) feel the freedom, extra energy etc would hopefully be worth all that.

But that's just me.
Maybe I will change my mind if/when I am in transplant lamd.

[Rerun]

The lab draws became a moment of life and death for me.  You get to a point of only going twice a year.  But two times a year my HEART would stop until I would hear back from the Dr. Office what my creatinine was.  If it was 1.9  ........ Life was good for another six months. 
Probably how a person feels after beating cancer and then going in for a yearly check up.

I had too much to lose.  I had a great job, lived in paradise and could travel anywhere in the world.  I knew I would lose all that if my transplant failed; which eventually it did.  And I'm back in Spokane on disability and dialysis.   

I say GO FOR IT at least once RichardMel!  It is a wonderful thing and I wouldn't trade those 17 years for anything.

I think I'm afraid of climbing that mountain again.... getting a job with benefits! (for one)

If they could have just given me a new kidney right away, but to lose everything and start over is too exhausting to think about.  If I could have purchased a kidney right when I was losing one.... I would not be on dialysis right now.  I'd still have my job and living in Sacramento.  So there Hemodoc!

                         

[karen547]

This thread has me really conflicted. I have a lot of history of cancer in my family, and am now scared to get a transplant, but I dont like dialysis, but I know about the horrible side effects of the drugs post tx. I'm younger though so maybe I should go for it, and at least try?

[stauffenberg]

I entirely agree with you, RichardMEL.  While there are extremely RARE medical appointments and labs to be done after you have had a functioning renal graft for a while, essentially with a transplant you live exactly the same life as a normal person.  I could live with someone for a year without them ever being able to guess I had had a kidney transplant, but I certainly could not have said that while I was on dialysis.  I remember in the period shortly after the transplant being profoundly disrupted by the uncomfortable feeling that I was failing to meet some important obligation by not having to waste every second day of my life on dialysis and then waste every day in between recovering from dialysis.  The sudden ocean of free time that pours into your life is an embarrassment of riches you hardly remember how to use.  Suddenly it dawns on you how healthy people can get so much done in a week.  Suddenly your planning unit for life projects expands from one day at a time to years at a time, so it becomes possible once again to construct a coherent plan of existence, rather than just lurch from one medical appointment to the next.  If on a given afternoon at 3 P.M. the thought enters your head of just buying a plane ticket to Aruba and taking off, you can do it, because now the world is your oyster, rather than just existing like a hamster on a treadmill, trapped in the narrow interstices left open between three four-hour treatments a week and all the ancillary time-consumption that goes with them.  The difference between dialysis and transplant can be so stunning I can't believe that the issue of which is preferable can actually be debated!

[stauffenberg]

Karen547, one important thing people don't realize in assessing the options of transplant or dialysis is that dialysis itself carries a greatly increased cancer risk, so it is not as if your increased risk of cancer could be a deciding factor in declining to have a transplant. (If you are diabetic, the paradoxical effect is that the immunosuppressives actually do not make your chance of cancer any higher.) The great clarifying point is that the toxic effects of dialysis and the toxic effects of immunosuppressive drugs are all rolled into two simple numbers which allow you to compare their relative magnitudes, and that is the life expectancy with each treatment modality.  Although results vary depending on your age and co-morbidities, with a new kidney from a cadaver donor you will live very much longer than with most dialysis modalities, and with a live donor you will live even longer than that.  Now for people who are suicidal and would like to die as soon as possible, dialysis is definitely preferable, but I suspect they are in the minority.

[Rerun]

I agree Stauff and if I could have received another kidney as they took the old one out that would have been great.  We need to fix the system of turn around time for a new kidney so you don't lose your life style while waiting.  

[Rerun]

In the US you have to be cancer free for 5 years before you could be listed on the Transplant list.   I don't make the rules.

[glitter]

My husband had cancer and its only been two years...all of the transplant places here have said 5 years -except for the one in Gainseville Fl- he is doing his work-up to be approved. They are also the only ones who looked at  his medical records in there entirety (as far as the cancer goes) so he is happy- but I am very apprehensive. I am afraid he is going to get more cancer, much quicker. I have read so much I am afraid this is foolish.....he couters my arguement with,' I won't get on the list if they think its not safe'    That may be true, but so much medicine is guess-work.

[dkerr]

After reading stauffenberg's post,I did some looking on line and found the following to be interesting:
http://www.uptodate.com/patients/content/topic.do?topicKey=~ytB_wv.M.1I/M3h

[G-Ma]

Thanks dkerr.  I read through the article and noticed the Hep B and C...well I had Hep A, in 1992 and last year they found Hep C in my blood workup and did several after to make sure and yes it was there so guess that's another reason for me and CA in my family history.

[flip]

Same here, G-Ma. All of a sudden HCV showed up in my labs. It had to have come from the center. My attorney is in charge of it now.

[G-Ma]

Mine probably from one of those many blood tx.

[flip]

They basically ignored mine and said hopefully I would develope antibodies and it would go away. No treatment of any kind.

[Hemodoc]

Wow, what a great discussion.  Being on vacation I missed this discussion until today.  Yes, you can travel on dialysis.  My car has put on quite a few miles since we left California a month ago.  I am in a hotel in Vermont tonight reading IHD.

G-Ma, I have chosen for multiple reasons to forgo the transplant list at present.  The straw that broke the camel's back for me was when I was diagnosed with melanoma from the dermatology evaluation that I set up for screening.  Skin cancers occur in a large number of patients post transplant that can be deadly.  9-20% of renal transplant patients will develop one form or another of cancer depending on how man years of follow up is counted.  It is a significant number.  Perhaps if renal transplant meds improve with a lower cancer risk in the future, I might make a different decision.  For now, I won't accept a living donation to not harm the donor, and I don't want a cadaveric donation due to the meds.

In any case, I just read through these posts and it has been some great commentary.  It is an individual choice, but the home daily dialysis option is not utilized as well as it needs to be as it is in so many other nations.  Its time has come

Peter

[del]

 I totally disagree with your comment stauff "Now for people who are suicidal and would like to die as soon as possible, dialysis is definitely preferable, but I suspect they are in the minority."  I don't think that people who choose dialysis over transplant are suicidal - they have their reasons and a lot of people have stated their reasons here.  Hubby has had 11 years on dialysis 8 good years since starting hemo.  He has chosen not to have a transplant and I really think it is the best choice for him..  Nephs even agree with him that if everything is working well and he's happy why try to fix it!!

I don't know about other people but I really don't like the comments you make about people who choose dialysis over transplant.  For some people they have no choice transplant is not an option!!! I don't like being told that people on dialysis have a "hideou life" (that was in another thread I think)or are "suicidal".  We have done our research Stauff (probably just as much as you have) and for right now this is hubby's best choice.  We would have to go to another province for a transplant and have to stay there for maybe a month. It is not only cancer with the drugs but the other side effects as well!!

This can be discussed rationally without the comments about suicidal or hideous lives. We have neither of those.  

[flip]

Nice post, Peter. We are basically in the same boat. I won't be considered cancer free for another 4 years (skin cancer) and I'm now HCV positive. For me dialysis is about like Aunt Bee's pickles....gotta learn to love it. I agree that home hemo is the best solution, maybe even better than a transplant in many respects. I know this is a piss poor analogy but dialysis machines don't usually fail.

[del]

flip if the machine you are using fails there is always another one!!!

[RichardMEL]

Hey Rerun - I totally didn't consider that "life and death" situation you describe... but I actually do understand that feeling and issue because prior to starting dialysis I had that feeling exactly every 3 months or so when I did labs and then went to see the specialist - dreading the result - and dreading if the doc would say it was time or not... and profound relief when he'd say "ok you need to start soon but we'll keep things the way they are now" - so you make a very good point with that.

Still... I would undergo that if it meant the rest of the time I was freeeeee!!

I like the sound of Aruba ... do lots of girls wear bikinis there? 

[glitter]

I don't know about other people but I really don't like the comments you make about people who choose dialysis over transplant.  For some people they have no choice transplant is not an option!!! I don't like being told that people on dialysis have a "hideou life" (that was in another thread I think)or are "suicidal".  We have done our research Stauff (probably just as much as you have) and for right now this is hubby's best choice.  We would have to go to another province for a transplant and have to stay there for maybe a month. It is not only cancer with the drugs but the other side effects as well!!

This can be discussed rationally without the comments about suicidal or hideous lives. We have neither of those.  

It may not apply to you.....
He is entitled to think whatever he likes about wether its a hideous life or not, or if its suicidal or not- you may not agree with him, you do not have to agree with him. If his comments offend you- skip over them- Epoman welcomed all opinions, not just the 'politically correct ones that don't ruffle anyones feathers', I like reading his posts.

[del]

 I do respect other people's opinions and I do like reading other people's posts but I would never make comments that put down other peoples decisions about their types of treatments.  This started off as a thread to discuss people's reasons for choosing to not have a transplant.  Shouldn't turn into a a thread telling people they should have a transplant. That is an individual choice and everybody should respect each others choice whether it be transplant, pd, hemo or no treatment at all!!!

[florida.flyer]

Hi, I'll just add my thoughts to the discussion. I'm 58 years old, been on CAPD for 1 year, no problems. (my veins are too small for hemo, wouldn't want to do that anyway, needles freak me out! ) anyway I got the workup at the Mayo Clinic last year to be put on the transplant list, but all the info I got there scared me silly. dialysis works fine for me, I get 100% disability and I enjoy my free time around the exchanges. I'm retired from American Airlines so I fly free (when there's an empty seat!) I go to PA nearly once a month to visit daugher and grandson, just got back from Vegas last week, (Cher was awsome!) I consider my life good at this point. ( a date would be nice but am realistic that is not going to happen)

[Joe Paul]

I go to PA nearly once a month to visit daugher and grandson

Im curious, where in PA do you come to visit?

[monrein]

At 26 I went on dialysis.  I was too scared to have a trx when informed of the risks but I did home hemo for 5 years and did well.  I went on the list after 4 years even though I was still nervous about side effects.  I was called for a cadaver trx at 31 and although I was petrified, I had it and it worked really well for over 23 years.  I take care of myself as best I can, eat sensibly, pay attention to medical maintenance and go to a gym. I see a dermatologist regularly to check for skin growths and have them removed on a regular basis.  My mother died at 46 of melanoma so I avoid the sun, use sunscreen every day and watch my skin very carefully. I'm hoping to have a living donor kidney but I certainly don't want to put anyone at risk for anything adverse and my potential donors and I have discussed this.  They are more keen to donate  than I am to receive.  I am fully aware of the risks and the side effects of trx but will go for it anyway.  When younger I took many calculated risks that enhanced my life and was constantly warned about the "dangers" of some of my choices.  (Mostly to do with traveling to places that others deemed dangerous).  Life is risky and none of us get out alive.  That's a certainty.  I know the risks, I'll assume them and if I die, I'm OK with that.  Should my donor die, or be harmed I would be devastated and would struggle for the rest of my life to come to terms with that.

I cannot imagine a world in which we would all make the same choices about our lives and that goes for ESRD treatment as well.  We need options so that our choices can be individualized ones that work best for each of us.  We all need to advocate as a community for more adequate dialysis, more home programs, more organ donation,(a huge change since last I was transplanted is that they will now do altruistic or non-related donor transplants) improved outcomes, public awareness and so on.  I really have no idea what would be the BEST choice for anyone else.  I find it hard enough to think about about and decide what is best for me.  Changing one's mind back and forth on this issue is also an option.

I am scared about the upcoming steps for me in this journey but I am well-acquainted with fear.  Fear energizes me to learn more, to ask questions, to push to understand the answers.  If I am wrong about my decision it will be my mistake and I'll have to live with it.  Or die with it.  

I completely understand why someone would choose NOT to have a transplant.  I hate the fact that my body requires dialysis but dialysis itself is not ,for me, an object of hatred.  It's a life-sustaining tool that I'm glad is available to me.  

[Hemodoc]

Dear monrein,

What an excellent personal testimony on your experiences, some positive, some negative.  My prayers are with you and your potential donors that all will go well with you once again.  I agree with all of your sentiments and yes, it is time for optimal dialysis here in America but it is not the right choice for all patients.  With all matters done correctly, you have an excellent chance of a good outcome for both of you.

May God bless,

Peter