I'm thinking about not getting a transplant.

[dyannalw]

Hello All,

I am likely to be put on dialysis within the next year and have been referred to a transplant hospital in Kansas City.  The thing is I'm not sure I want to go through a transplant.  Does that make me crazy?  My family support my decision and seem to understand it but I have a friend who thinks I'm throwing my life away.  I know I can live a long time on dialysis and that transplants are temporary and not guaranteed.  I guess I don't want to take a chance of my body rejecting the kidney.  I have read on here where some have gone through more than one transplant.  It seems like that would be really tough on a body.  I'd like to know what you all think about this.

Thanks,

Dyanna

[monrein]

I'm on my second transplant.  First one was cadaveric and lasted for 23 and a bit years.  Second one is just three months old but is working well.  We never know how it will work out, it is a gamble but for me personally it is one I'm more than willing to take.  I have done a total of six years of dialysis and life can be tolerable, even quite acceptable, but for me the transplant is way way better.

There is however no rush to make a decision and it's never easy.

[Wallyz]

Transplant is the therapy for ESRD with the best outcomes.  Extended Daily home hemo comes close.
Don't sell yourself short,  and don't let fear make the decision for you.

That said, it is your decision.  Welcome to IHD.  I lived in Kansas City for 9 years.

[rookiegirl]

It really is up to each individual on what they prefer.  Life is all about chances anyways.  You have to decided what is best for you.

Even though I was only on Peritoneal Dialysis for 1.5 years, I choice to have a transplant.  I'm post transplant for almost 3 months and so far (Thanks be to God) I'm doing well.

Whatever you decided, you are in my thoughts and prayers.

~Rookiegirl

[okarol]

There was never any question for us as Jenna was lifeless on dialysis - for her it was surviving - but she was so young we wanted her to have more freedom. She's 2 years post transplant and doing great. There are risks associated with immunosuppressants (skin cancer for example) but there are also risks with long-term dialysis. Good luck whatever you decide.

[Lucinda]

I have only been on dialysis for three months and I had a lot of problems when I started because of allergic reactions.  I am now doing dialysis at home and I have absolutely no wish whatsoever to go on the transplant list.  That may change with time but I don't think so.  I am sensitive to any kind of drug and I absolutely love the sun so a transplant is just not an option for me at this stage.  Every form of renal replacement has its pros and cons, it is just what fits better into your lifestyle.  I am really comfortable with my decision to do nocturnal hemo at home.

[MandaMe1986]

I think you know what is best for you. And only you can decide what to do.   

[cariad]

Hi Dyanna,

I think many of the members here prove that you can lead a full and happy life whether you choose to remain on dialysis or seek a transplant. Absolutely it is your decision, and I hope your friend can learn to be as supportive and sensitive as your family.

Since you asked for thoughts on the matter, I would probably see if I could be listed but remain inactive - that way you will never get a call offering a kidney, but if you change your mind, your wait for a transplant should be considerably shorter.

Also, while transplants are indeed "temporary and not guaranteed" as you say, some people do very poorly on dialysis. I did not tolerate dialysis at all well. I ended up getting a transplant and having almost no problems in 30 odd years.

I hope you can be at peace with whatever decision you make, and that you don't feel like you have to justify your choice to anyone.

Best of luck!

[Rerun]

Dyanna, you don't have to rush into a transplant.  They just want you on the list to get your time up there.  You don't have to take it.  Tell them you are not ready and they will go on to the next person.  If you are more comfortable to just deal with dialysis right now than tell them that.  You can always start the transplant evaluation at a later date.

                                                     

[RichardMEL]

Yes, I think you can be on the list but in an "INACTIVE" state which means you won't get called - if you change your mind you go to ACTIVE and the time counts. At least that's how it works here.

You are NOT crazy for making a personal choice to not go for a transplant. Many people (like Zach and Lucinda who posted) have varied and valid reasons to not choose that path. Transplantation is a form of treatment like dialysis and it's certainly up to each person what they choose IMHO. Nothing "crazy" about that.

You may well change your mind after experiencing dialysis and the various restrictions that places on you - or you might equally decide "hey this works fine for me" - at the end of the day it's the quality of your life/lifestyle that should be paramount and only you can decide if the stability of dialysis is more important than the potential freedom that a transplant can offer (with a ?? about how long that might last for of course).

Personally I am going for a transplant. Only because I want the freedom to drink/eat freely again and most importantly to be able to *TRAVEL* properly again and not be tied to a machine 3x/week. That's just me. Everyone is different and I certainly have no problem supporting anyone who chooses to not pursue that option.

I wish you luck whichever way you go - and hopefully you can hold off Dialysis for as long as possible

[dyannalw]

I want to thank everyone for there responses to my message.  I had no idea you could go on the list and be inactive.  That is definitely something I need to think about.  I really appreciate the support you all give each other and me.

Thank you,
Dyanna

[paris]

Getting on the list is a good thing.  Like others have said, you can always say no if you get a call.  You are always in control.  It takes awhile to get through the evaluations, so it mght be good to at least start the process.    And, I have changed my mind so many times, but I am on the list and moving forward.   Keep us updated and keep asking questions.  I learn something new here everyday.   

[Hanify]

Go with your heart.  There's no right or wrong.  Ask lots of questions here too - that'll help.

[MiSSis]

Hi Dyanna.  You've come to the right place to voice your concerns and get some helpful advice from some people who have been there and done that.  After 5 1/2 years back on PD, I've just started the process for a potential 3rd transplant.  I still don't know if I'll be accepted into a program but I guess, at 54 years old now, I'm not sure that I can yet accept the rest of my life on dialysis without at least finding out if yes or no, I can have a transplant.  When or if I'm accepted, I can then make the decision if that is the course I want to take.
 

[Brightsky69]

Dyanna,

I totally understand where your coming from. I had a transplant for 17 years and it was great. Now I am back on dialysis (at home). I am on the list and I know I have a long wait for a kidney. I can see where a person could get comfortable on dialysis and not want to rock the boat. But the freedom you get with a transplant is wonderful and sooooo worth it. At least to me it is. And I do wonder sometimes if at 40 if I get another transplant will it last me for another 17 years?? Will it be better to say "safe" on dialysis and not risk a transplant?? It's all risky...that's just life. We could get hit by a bus tomorrow.

[KT0930]

I received my third transplant in January 2008 and it works better than either of the other two ever worked. I guess because I got my first one when I was only 7 and it lasted nearly  20 years, I never really considered any other options when each transplant failed. Being only in my mid-thirties now and having a son who's very active in scouts and sports, I wanted to be able to keep up with him, and that just wouldn't be possible on dialysis.

Yes, there are risks to consider and precautions to take with a transplant, but for me and the way I live my life, those far outweigh the inconvenience and lack of energy that come with dialysis.

 But that' my life. What works for me may not work for you.  As others have said, this is a personal decision but we'll be here for support and advice, no matter what you decide.  You've come to a great place for both!

[kitkatz]

From someone on the other side of the fence:

I am not on the transplant list, not for lack of trying either, medical problems bumped me from being listed at all for a transplant. So I have been on dialysis for ten years now.  I was on three days a week for four hours, then went to nocturnal. The difference in me between three days a week and nocturnal is amazing.

I would suggest to do whatever you feel is right for YOU and YOUR life. 

Do not let anyone try to talk you into something. 

Find a dialysis regimen that works for you and stick with it.

 Do not miss treatments.