choice to have a transplant or not

[prairiegirl66]

Hello
Did/do any of you struggle with the decision whether or not to get a transplant, given all the side effects from the meds etc, and the major surgery?  My husband is very afraid right now, sick of all the testing and not sure he even can go through the transplant process (he's had a bunch of other health problems related to diabetes and is just sick of being sick).  I'm not sure myself if he can go through it..  I think he's somewhat depressed too, had a really rough year in 2009, first on PD then on Hemo when PD didnt work worth a crap.  He's anemic and they don't seem to be able to get that fixed (Hemoglobin was at 122 in June and they stopped the epo and its been at 80-88 since then).  He doesn't really trust doctors too much either, which went over well at the social worker's evaluation. 
I'm feeling very unsure and upset about this all myself, any support or ideas how to help him would be welcome!
Brenda

[RichardMEL]

Hi pg66...

It sounds like he's in a bit of a state with all the problems he's having AND transplantation is a scary process for anyone to contemplate. Heck I want it so badly for myself but there's a part that does worry about the actual process and how it will go. I know I just have to have faith in the medical professionals that will be involved at the time.

All I can suggest in terms of your husband is to stress the potential positives that a transplant will bring him - a release from dialysis for one, and those associated problems. Solving the anemia and other issues - giving him more energy and the ability to function more normally - something we all want.

Of course the priocedure is not without its risks, and the transplant could fail (and probably will at some point down the track it is true). However by the same token it could provide him with years of a far more normal life - isn't that what he wants?

In terms of the meds, side effects etc - for me personally I see it as no different to the medications I am currently on while on dialysis. Yes, they are different and have different and some well known side effects (I can't wait for the moon face, appetite & extra hair!) but those lessen with time as the doses become more stable. As I wrote for me anyway the goal of a more normal life, freedom to travel and so on are the incentives to go through with it and take the risk. I am pretty stable o dialysis though - I imagine if I was not doing so well - like your husband - I would want it that much more with the hope of things being more normal to me.

One thing that I will add is that if he really doesn't want to consider transplant at this point then it really IS his decision (his body, his life, his choice) and that should be respected even if it seems short sighted and narrow minded to some. Be there for him, support him.. that's what he needs.

ALl the best!

[dwcrawford]

I can't help except to say I am in a similar situation.  However I do well on hemo at the present people, including doctors, keep talking about transplants.  I'm too old.  How do I know I could handle the surgery and/or the possivle complications.  Is it better to leave things a lone if they are working?  I don't know.

But a little advice would be (my usual advice in difficult situations) to listen to all and then decide for yourself based on your individual circumstances.  MMMM, that's  could be my montra!

[billybags]

I know what you mean, should he shouldn't he. My husband has been told that basically he is too old 69 to have one. He is a sun lover and I mean when the sun is out, he is out and he said if he had a transplant he would not be able to sit in the sun and that would really pis* him off big time. Transplantation is not always what it is cracked up to be.You would have more freedom and your life would change again. You have different drugs and things. You need answers from people who have had one, you need to talk to your neph about this and then make a decision. Good luck.

[RichardMEL]

Additional comment:

Transplantation is another treatment option. It is not a cure and it has its own pros and cons. Plenty of folks here have decided to not go the transplant route for various reasons and for some it works just as well to do PD or nocturnal hemo, or whatever.

Like I said in the end it comes down to what you're comfortable with and what you (as a patient) want. Youir body. Your life. Your choice.

Me, I want a transplant because I believe that even with the meds and restrictions it will give me a better quality of life overall and allow me to live the sort of life that *I* want (eg: being able to travel more and harass the women of IHD in person  ). Everyone has different goals and priorities and transplant may not be an option for everyone.

[dwcrawford]

I agree except maybe your last sentence should have read "option or choice"..

and point too is:   If you start messing with IHD women in real  life, one of them (or one of their husbands) might shoot you and then, "what a waste of a kidney that would be.

[cariad]

Hi Brenda,

Sorry to hear that your husband is struggling. I think some amount of depression is a given in situations like this, and that could be clouding his thinking a bit. If dialysis is this tough for him, transplant seems like it would be his best option, and I would suggest he at least complete the testing. There will likely be a long wait between completing the eval and an offer of a kidney, and he can always refuse a kidney if he is not ready when the call comes.

I imagine everyone wrestles with this decision to some extent. I certainly do, and I have already had what is considered a remarkably successful transplant. As for the side effects, your husband will not experience every possible side effect, and today there are different med options that were not available when I had my first transplant. Dialysis comes with its own side effects which are not a problem for everyone, but made my life unbearable.

I completely agree with Richard that it is so important to support him through this, and let him make his own decisions in his own time. With all due respect to the social worker, I think a little mistrust is healthy. It will hopefully motivate your husband to research this as much as possible before he chooses his path. Good luck.

[Joe Paul]

I too was scared, but with the time constraints of the chair, 3 days a week, 4 hours at a time, and the physical damages possible with staying on dialysis for an extended period of time, I decided that since I tried PD, Hemo, the only option left to try was the transplant. Sure there is no guarantee, but I rolled the dice and came up a winner. Now I can say I have tried every treatment the is right now, so later in life, that question of what if will never cross my mind. I suggest you bring your husband to I.H.D. and let him post his concerns here. I am sure with the wealth of knowledge from many fine people, it will help him decide more of which road to take. Like I say, there are no guarantees, I myself suffered a heart attack soon after my transplant, when just 2 months ago I was told my heart is as healthy as any 30 year old. But, no treatment has made me feel like a new man, like the new kidney I was gifted. Good luck in helping him change his mind.

[dwcrawford]

Joe Paul, nice to see you in chat last night.  You didn't mention your transplant nor your heart attack though.  I'm sorry if I was insensitive to anyting.  And happy about your two new family members.  My question and reason for writing here is that I'd wish that you or someone woule elaborated on "the physical damages of staying on dialysis".  I'm not in here to preach on any method but rather I'm going through a questioning period. 

[Chris]

Well I would encourage, but not force the issue. If they are having a bunch of test thrown at him, ask them to spread it out so he can rest. I'm not sure what problems he has gone through because non of us diabetics go through the same thing at once. I had severe hypoglycemia unawareness, sight going to crap, kidneys shot, frequent trips to the hospital, had the angio done (what an expeerience that was!), neuropathy in the legs/feet. The one main motivational thing that kept me going was to get away from the dialysis center. I started to rad books on transplant that went over side effects, which also help determine what center to choose (non steroid use), and went to many different transplant seminars. However the seminars were mainly kidney except one, but no one was there who actually had the k/p tx done.  So maybe your husband should start reading up on it, look for and talk to people who have had the transplant done to get some confidence or ultimately choose not to go through with it. Just respect his decision, it's not an easy one, but he just needs the right motivation to get over the panic. The testing can be gruelling so  the focus of the goal must be kept in check as the ultimate goal to reach. Reaching that goal can be the ultimate reward to be insulin and dialysis free. I'd say let him ask anyine of us questions (those who are diabetic and on dialysis) who are going through or have had the transplant done to get varying points of view of the process. Another suggestion is to see if your local NKF puts on a Living With Transplant seminar where he could meet others who have gone through a kidney and pancreas transplant or are in the process. I'm not sure which other states do this except where I live in Illinois.

Don't hesitate to ask anything

[Sunny]

I would recommend he at least go through the testing process to get on the transplant list. He can always turn one down if he's not ready, and it takes so long to get through the process anyway. If it is overwhelming, just take little steps and spread out all those doctor appointments. Also, it takes so long being on the waiting list he'll have plenty of time to educate himself as to whether it is truly what he wants to do. I didn't think I'd ever want a transplant, but after dealing with ESRD for nine years and waiting on the transplant list for six years, and now feeling lousier and lousier everyday, I'm sure glad I put myslef on the list.