Transplant Consideration

[chuckdims]

It has always bothered me how everybody assumes that I want to have a transplant.  I'm 28, have no other health problems whatsoever (no diabetes, no high blood pressure, etc.).  From all accounts, I can be one of the patients that lives 30-40+ years on dialysis as long as I take care of myself. 

It seems like having a transplant is just trading one set of problems for another.  From what I can tell, I think I would just be happier living out the rest of my life on dialysis.  When I have mentioned this to my doctor, nurses, and social worker -- they look at me like I've lost my mind.  I find this frustrating.

I've been listed since April 2014 and the wait time in my region is 2.5 - 3 years, so I have a while to make up my mind.  But, truth be told, if they called me today, I would probably tell them no.

Does anybody else feel like this?  How did you make your final decision about what to do?

[MooseMom]

Don't let others' assumptions frustrate you.  It's not worth it.  You have other things in your life on dialysis that are more important than the opinions of others that you can never change.

Plenty of people feel like you, especially those who are on home hemo like yourself.  It's a good modality for those who can hack it.  Better the devil you know...

It's not a bad idea, though, to keep your options open and staying active on the list.  See if you are still OK with being on dialysis in 3 years' time.

[SooMK]

I do think that doctors assume that transplant is the best choice for everyone but I'm not so sure. Like you I had no other issues besides kidney disease but unlike you I am in my 60s. When a friend offered me a kidney and the transplant was pre-emptive I was relieved. Seven months out I have been fortunate to have had very few issues so far. However I wonder about many years on immunosuppressive drugs for younger people. I think you are doing the right thing by researching this to come to your own conclusion. A transplant might not be right for you now but in 20 years you might reconsider. I always think of dialysis vs transplant as a choice in which neither option is good but either beats the alternative. And there's always the hope of great gains in either dialysis and/or transplant that would make one choice more attractive than the other. Best of luck.

[cassandra]

Dear chuckdims when I was your age I had my dad's kidney already 8 years, the 14 years with his kidney were my best years. If your antibodies are not high I would keep a transplant a real consideration.

Lots of luck, and love, Cas

[iolaire]

As others said do what you feel is best.

My personal belief or hope is that if I go into the transplant strong I'll have a good experience with it (I'm in the same boat as you, generally healthy other than kidneys damaged from lupus 20 years ago).  That being said I do see why people would accept Dialysis for life and get used to it.  I'm 40 and thinking of the next 40 or so years and think that having a few longish time periods of no dialysis will be nice.  In high school I was on huge amounts of prednisone (still have the stretch markets from that) and if all the anti rejection drugs are similar then I can live with that for the freedom to have back the ~5-6 hours I dedicate to in center dialysis three days per week.

[noahvale]

^

[jeannea]

It is a very personal decision. Here's the thing. Life is unpredictable. You could do great on hemo for years or you could have problems. You could do great on transplant or you could have problems.

My thought is that right now you are healthy except for your kidney disease. You don't have heart problems or liver problems or diabetes or whatever. You are currently in the best position to do well with a transplant. Us older people have to deal with extra issues when getting a transplant.

Now, how do you make the decision? Give yourself time. Live your life on dialysis for a while. If you want to get listed, it takes months for testing and appts. You can probably assume if you approach it casually, it will be about a year until you're on the list and then like you said another three years or so. That gives you lots of time to think and to experience dialysis. Ask questions, do some reading, be open to how you feel.

Good luck!

[iolaire]

Another note is that I think you are in the US, so whenever/if you choose to you list for a public kidney, your waiting time will be back dated to when you started dialysis under the new allocation plan.  So if you wait, you are not delaying your waiting time, instead when you choose to list you will jump fairly far ahead on the list.

[MooseMom]

Except for access issues - admittedly the most important part of doing hemo - I could control just about every other aspect of my treatment and care.  I knew with a transplant I would no longer have that control.  Yes, I could take my meds, keep the transplant flushed with fluids and exercise, but that wouldn't necessarily mean I wouldn't go into rejection at any time.  Being in "control" is important to me and sounds like to you as well.

Like you, being "in control" is extremely important to me because CKD (fsgs) seems so random and inexplicable.  No one knows where it comes from or how to treat it.  I feared dialysis because there seems to be so many moving parts that staying in control becomes difficult.  At least, that was my perception.

I'm relisted, but still scared about the drug protocols that go along with transplantation!  Yes, they are more refined than ever, yet from reading on here, the side effects seem worse than a decade ago.   However,generally speaking, I have to keep in mind that we don't hear as much from those who are doing great with their transplant as opposed to those experiencing problems.  They have no time or inclination to post on this blog and are getting on with enjoying life.

I've had my transplant for about two and a half years now, and while I can only speak of my own experience, I want to take the time to assure you that I've had no problematic side effects.  I did have neutropenia in the early days, and after several days of testing for every infection possible, it was decided that the neutropenia was med induced.  I was taken off Myfortic and given two doses of neupogen.  Problem solved.  Other than that, my hair has thinned a bit, when I am tired I get some tremors in my hands, and I gained 10 pounds in the first year post tx (which have since come off).  You are right, though; the people who have had more serious side effects tend to be the ones that post here, and the rest of us who are doing just fine have been remiss in sharing our much better experiences.  I realize that I am not the sole template, but I do want to provide you with a modicum of reassurance.  If you have any questions that you think I can help you with, please feel free to ask.

PS:  I am only a few years younger than you.

[chuckdims]

Thanks, all, for the great replies.  You've all been very helpful.  It is helpful talking to other kidney patients about this as others just don't seem to understand.

I think I am going to wait it out for now.  Like MooseMom said, who knows how I will feel in a few years.  For now I am content, but maybe one day that will change.  Maybe it won't.  Some of my financial concerns will be gone, my youngest child will have started school, and I am sure one day I will have access problems.

I just really don't see a transplant as a way to extend my life, just a way to improve the years I have left.  And for now I am content and don't feel like my quality of life is lacking in any way that would be improved by trading one can of worms for another.

[cassandra]

Sounds like a plan! Good luck with everything.

Love, Cas

[corey]

I just really don't see a transplant as a way to extend my life, just a way to improve the years I have left.  And for now I am content and don't feel like my quality of life is lacking in any way that would be improved by trading one can of worms for another.

Hi,

How can you even compare dialysis to a transplant?

Dialysis is a much more larger can of worms. Limitations being the biggest.

Once you get a transplant you're back to being healthy. Get one while you have no other major health issues obtained from dialysis.

As for side effects, it's different for every patient, if you have a very weak immune system you'll be put on hardly any immunosuppressive medication.

I myself, am on a very high dose of Tacrolimus. That doesn't stop me from doing an extremely physical job, play all sports, exercise and go to the gym. The only side-effects i have from it are that my hands/feet occasionally shake/burn. In my opinion, that's a massive tradeoff from feeling like crap 24/7, having a strict diet and limited fluid (worst one IMO).

I'd prefer to live a full healthy 10 years with a transplant than 'survive' 50 years on dialysis. Metaphorically of course.

Your outlook on life would DEEPLY offend those who are unable to get a transplant. There are people deteriorating year after year on dialysis waiting for a transplant then there's you who doesn't have any problems yet contemplating whether or not to join the list.

With plasma exchange also, treating rejection has improved greatly. I think it's over a 95% success rate for any mild form of rejection.

But that's just my 2 cents, i made an account specifically to reply to this thread. Sorry if i've offended you in any way shape or form also.

Corey.

[Simon Dog]

Your outlook on life would DEEPLY offend those who are unable to get a transplant. There are people deteriorating year after year on dialysis waiting for a transplant then there's you who doesn't have any problems yet contemplating whether or not to join the list.

I would think that rather than being offending, people unable to get a transplant (assuming due to organ availability) would be grateful to someone withdrawing himself from the recipient pool.

[jeannea]

I don't think he's trying to offend anyone. He's being honest and thoughtful. This is his current thought process and it was presented respectfully.

[Deanne]

I was diagnosed with kidney disease when I was only 9. I grew up thinking that I would let things run their course, refuse transplant, refuse dialysis. My kidneys lasted until I was about 50. By then, my opinion had changed. I knew I was a good candidate for a transplant and I learned from people on this site that I could have a nearly normal life with a transplant. I also read messages from people here who were doing great on dialysis. I went on the list before I needed dialysis. I knew I could always change my mind if/when I was called.

I finally had to start dialysis. It wasn't so bad for me. I still lived a relatively normal life. I was on PD, worked full time, and was still able to participate in normal activities. Again I wasn't sure transplant would be a great idea. I was doing so well as it was - why fix what didn't seem broken.

When I got the call for a transplant six months later, I accepted, primarily because I thought it gave me a better future, not necessarily a better "today." By then, I'd learned that even though I was doing great on dialysis, it's hard on the body and a transplant would be better in the long term. Even though I was doing great on dialysis at the moment, what about five years from then, what about 10 years out? By then dialysis might have caused complications that didn't make me feel so great and could have caused enough difficulties to make me ineligible for transplant. So for my future, I had a transplant.

The first few months were hard. I often thought I'd made a mistake. I'm 10 months post-transplant now, and I usually forget that I've had a transplant.

Everyone has a different experience and different opinions. All you can do is make the best decision for yourself. Transplant isn't right for everyone and I hope people learn to respect your decisions. As long as you're healthy enough to accept a transplant, you can always decide not to make a decision for now. In your shoes, I'd probably go through the process to be listed. A transplant won't happen as soon as you finish testing. Testing isn't a commitment.

[chuckdims]

I'd prefer to live a full healthy 10 years with a transplant than 'survive' 50 years on dialysis. Metaphorically of course.

I think that is the difference between us, Corey.  I would be perfectly content with 50 years of surviving on dialysis, even if the time frame you mentioned was hyperbolic.  If I know I will live 30 more years and those can either be all dialysis years or a combination of dialysis and transplant years, I would have no issue just accepting 30 years of dialysis.  But as many have pointed out and as I know well, there are many unpredictable variables.

As far as my comments being potentially offensive, I suppose I can see where you are coming from, but I would think any kidney patient would understand and appreciate the unique prerogative of each individual to manage his/her own care.  Foolish?  Sure.  Stupid?  Ok.  Offensive?  I don't know about that.

[cassandra]

Dear Chuck as a 32 yr (in 3weeks) dialysis, and transplant experiosa, and 100% antibodies so 0.001% chance of a kidney I found your querie interesting, and understandable.

And most answers too.

Love, Cas.   

[quote author=corey

Your outlook on life would DEEPLY offend those who are unable to get a transplant. There are people deteriorating year after year on dialysis waiting for a transplant then there's you who doesn't have any problems yet contemplating whether or not to join the list.


But that's just my 2 cents, i made an account specifically to reply to this thread. Sorry if i've offended you in any way shape or form also.

Corey.

[/quote]

[cdwbrooklyn]

Hi Chuckdims,

I don’t think your post is offensive; you are just explaining how you feel and what works for you.  I am a home patient and been on dialysis for 15 years now.  Besides getting older and dealing with the ache and pain from getting older, I am still functioning well. There’s a female in my center that been on dialysis for over 20+ years and refuses to get a kidney.  She is a big advocate on people not accepting a kidney while she was offer a kidney several times and turned them all down.  She said all her friends that started dialysis with her and accepted a kidney are not on this earth anymore.  She is a nurse in another field.

Moving forward, I like doing it at home because I can set my own schedule and change it when I feel like it.  I do not have any restrictions when it comes to fluid and food since I dialysis 4 -5x weekly from 3:25 – 3:30 hours a day.   I feel good and sometimes I forget I’m on dialysis until I get home and have to get on the machine.  It can be hard some days as I don’t feel like doing it and I have to push myself.  However, I can hang out with my family and friends while attending there events.  I feel in control and have more freedom from being in-center for 11 years.   It’s very different but it’s worth every minute. 

Just my 2 + 2 cents.

[Simon Dog]

It’s very different but it’s worth every minute.

Well said.

[Marsh]

I consider myself very lucky....I have been on dialysis for almost 4 years with no dietary or fluid restrictions.  Rarely gain more the 1.5 kg between treatments and labs are great.   Recently, my physician changed my dialysis days to 2x per week.  I was on the transplant list for 2 years before and 1 year after I started dialysis.  But, I have decided that I do not want a transplant for several personal reasons.  If any of this changes, I may re-think my decision, but I doubt it.  Any my family is 100% OK with my decision.  It is an individual decision, no one else can tell you what is best for you.

[Angiepkd]

I am not at all offended by your question.  It's something each patient must decide for himself.  I can only share my own experience and you can take it for what it's worth.  I am 46 ow and started D when I was 44.  I have Polycystic kidney disease and was In overall good health.  I did home hemo, which worked well for me, but I also had several access issues.  I felt decent on hemo, but began to hate the restrictions with diet and fluids.  I always wanted a transplant, because my condition is hereditary and I saw many family members choose dialysis and transplant.  I am now 9 months post tx and I feel like I have my life back.  I tell people my best day of dialysis is still a thousand times worse than my worst day post transplant.  I am free and feel better than I have in 10 years.  Just an opinion to consider.  Best wishes in whatever you decide!

[skinnacat]

i wanted to add that i agree with what ur saying and i also do not wish to be transplanted
i am a 42 yr old woman and am on home dialysis right now...just started 3 months ago
i also notice how the doc and social worker push getting a transplant
i dont want one because my mother just recently died of lung cancer and my aunt allso
died from lung cancer and i have recently quit and have been for the last 4 months but
i was a smoker for a very long time and cancer is a real problem with transplants
and its to much of a risk for me to take
i personally cant risk it and sometimes i think i am the only one that feels this way but am glad
to see other people do too