I had my transplant evaluation

[Adam_W]

I had my evaluation and first round of tests today for transplant, and I have a lot of mixed feelings about it. Everything went well with the tests (EKG, chest X-ray, and lots of labs), and we had a group meeting (about five patients total), and heard from the coordinators, social worker, and primary transplant surgeon, who happens to be the same doctor who did my graft. I still have mixed feelings because I'm still not 100% sure if this is what I want to do. I do feel like I'm under a lot of pressure to do this, and I want too, but at the same time I don't because I'm doing really well on home dialysis and I'm finally comfortable with it. I know there are advantages to a transplant, and if there was a guarantee of success and no complications or side effects, then I wouldn't hesitate to dive right in. When I say I'm comfortable on dialysis, I must strongly emphasize HOME dialysis. Home hemodialysis is so much different then in-centre. I guess I just want to make sure that if I go through with this, I'm doing it for myself and my own health, and not just because everyone and their momma wants me to get a transplant. I'm afraid that some people in my family and even some of my my friends will be seriously mad at me if I turn down getting a transplant and choose to stay on the machine. I don't want that to happen because I've finally reached the point after what seemed like a very long time where my stress level has dropped to very tolerable levels, and I'm comfortable with my treatment, despite the occasional problems (NxStage cartridge problems). I just don't want anyone to put me down or say there's something wrong with me if I elect not to go with a transplant, and I want people to realize that a transplant isn't for everyone. All this being said, I'm not hesitating to complete the testing and get on the list, that way if I DO chose to go with transplant, I'm already on the list. OK, I think I'm done now.

Adam

[Roxy]

Adam, it's totally your decision and I think it's great that you're really taking the time to weigh out your options. The last thing you want to do is go through with it and regret your decision. That's awesome that your tests went well and you're going to try to get on the list so you have the option if you do change your mind. 

[George Jung]

Adam, I just want to comment if I may.

You know,....... there are no guarantees in life,..... period.  Even dialysis, of any kind, is not guaranteed.  I respect the temporary level of comfort that you feel but if you are ever to have a transplant, the sooner the better while you are in better shape.  Please don't use your health to prove any kind of point to friends, family or anyone.  Do what is right for you regardless of what anyone thinks.  

I have my first round of evaluation next Monday, so I'd be interested in anything else you would have to say or any advice you might have.  Anyway, don't feel as though I am telling you something you don't already know, sometimes we just need to hear it come from elsewhere.

[Wattle]

Adam, You have the right attitude.   

Do what you think is right for YOU, not your relatives or friends. Jump through all the hoops and get on the list. If and when the call comes make the decision that feels right.

 

[livecam]

You are doing the right thing.  You can always change your mind right up to the moment the transplant begins and it is no harm, no foul.  They simply call the next person and give the kidney to them.

Side effects of medications for most people are minimal to nonexistant these days. The immunosuppressants used now tend to target the area needed while leaving the rest of you alone.  I speak from 6 years of experience during which I have had very little wrong in terms of cold, flu, etc.  I fight that stuff off better now than I ever could on dialysis or in the years preceeding it.

There is the possibility of various side effects and the chances of getting cancer are greater after transplant but by and large you are much better off with a transplant than on dialysis.

Keep going in the direction you moving in now, you can change your mind at any time so there is no pressure to complete the transplant should you decide not to.

[okarol]

I think it's a good idea to get listed. It expands your options. It would be unfortunate if
you weren't tolerating dialysis, but some other obstacle delayed your getting on the list.
Good luck Adam!

[goofynina]

It's your decision my friend, and whatever you decide to do, remember one thing, we are all here for you    Take Care Adam

[Romona]

I think you are experiencing normal feelings. You'll know when the time comes if it is right for you. When I got the call I tried to think of a good reason to say "no". It just felt right and I did it. What ever you decide will be the right choice for you. 

[Sluff]

It is your choice and only your decision my friend. Whatever you decide you will have all of us by your side.

 

[bolta72]

I am up for my evaluation next month and like you Adam have second thoughts,but I agree with the others in so far as getting on the list and making a choice when the time comes.

[paris]

Adam, it all sounds so simple when the team explains the process, but you have plenty of time to sort through your feelings before you have to make a decision.  It took 8 months to finish all my testing, because they always have one more thing they want to test.  Even now, after two years on list, my feelings go back and forth.  I must have a living donor, so I am limited with my options.   Go though the steps, have everything in order and when the time comes, you will know if it is right.                George, where are you going for your evaluation?  UNC by any chance?   Let me know if I can help in any way.

[stauffenberg]

Keep in mind, Adam, that there are clinically silent pathological processes going on in your body because you are on dialysis, and that these will become more and more evident the longer you remain on the treatment.  Rapid development of arteriosclerosis, loss of bone mass, damage to the pituitary gland, sub-optimal metabolism, abnormal hormone levels, will all continue to diminish your health and eventually manifest in serious overall deterioration.  In my own case, while I felt reasonably healthy for the first five years on dialysis, after eight years of dialysis I had developed multiple diseases from it, not all of which go away after transplant.  So the dialysis you now find acceptable is a changing thing, and someday, sooner or later, will look much less acceptable to you.  My advice would be to get out of it before its subclinical damage sneaks up on you, since you can't just snap your fingers and escape dialysis when you decide you need to!

[Adam_W]

Thanks for all the support, everyone. The coordinator said that the average wait time in Indiana is 1 to 1 1/2 years. I also have a few perspective living donors, including my brother (I know siblings are usually the best living donors). I'll have plenty of time to really decide if it's for me, and if I get the call and I'm ready, then I'll go for it. If not, then I'll just tell them I'm not ready yet, and that will make the next person on the list very happy. I'll keep everyone posted as things develop.

Adam

[Adam_W]

Well, I found out that my two most promising living donors, my mom and my brother, cannot donate. My mom has a risk of seizures, and my brother is hypoglycemic, and has a high risk for diabetes. My dad is the only one in my immediate family who is considered healthy enough to donate, but we are not sure yet if he is a good match. The uncertain feelings continue, but I'm still pushing forward with all the testing.

Adam

[Romona]

Good Luck to you Adam. You'll do what's feels right when the time comes. Don't pay attention to average times. For me it was 5 years. I was listed less than 6 weeks before I had a match. .

[paddbear0000]

Adam, I know just how you feel about the pressure from family and friends. My mother's boyfriend is the same blood type as me and is REALLY pushing me to do the transplant thing. He is so eager to donate (which is great), but I'm still not sure what I want to do. We just discussed this option for the first time less than a month ago, and he's already gotten his preliminary blood work done! Talk about pressure! And I'm not even ready to start dialysis yet (and it could be a while)! Everyone keeps asking me why would I even bother not getting a transplant. It's gotten very tiring having to go through all the reasons and argue about it with everyone. They seem to think that life after transplant is completely normal and, physically and mentally, you go back to the way you were before your kidneys failed (ie no side effects, etc.)! It's very annoying.

[Romona]

Everyone thinks you can just march in and have it done. You guys are all handling this well and supporting each other.
I wish I would have found this board before I had my transplant. 

[angela515]

 

[st789]

whatever ur. decisions, we r here to support u. all the way.

[lola]

Adam I'm glad your at least going to get on the list you can always turn it down when the call comes. We are all he for ya

[stauffenberg]

Statistics show that as long as the transplanted kidney comes from a live donor rather than a cadaver, the matching of the HLA groups is not very important for the success of the graft, so there is no reason for your father not to be your donor because of matching problems.  The only exception, which would be extremely unlikely in a patient who has not had a previous kidney transplant or a very large number of blood transfusions, would be if you have pre-formed antibodies to your father's tissues, yielding a positive cross-match.

[donnia]

Adam, only you can make this decision. 

I got listed on June 9th, and I did not even think about not trying to get on the list.  I am 35, due to so many abdominal surgeries.... home dialysis is not an option for me.  Also, I have small veins, so my surgeon has told me that I am not a good candidate for long term dialysis... so transplant is the way to go for me.  However, if you are content with home dialysis I say only you know what is best for you.  Good luck with your decision.

BTW.... I read all of your post, and respect you highly!

[icecream]

I am in the process of getting on the list.I had a stress test which came out good and they did an ultrasound on my carotid artery in my neck.I finally got my fistula to work.I kinda of feel that i am just getting adjusted to dialysis.I have mixed feelings about having a transplant.

[Joe Paul]

Good luck Adam, whatever you decide 

[icecream]

Hello..I went thru my transplant evealuation and as of last Monday i am on the transplant list.
i am feeling alsorts of mixed feelings.I am scared to death about everything. .Is there anyone in the same situation as me.