transplant patients- any advice ?

[Evanshope]

My son is receiving his transplant in two weeks(he's 16)...I was just wondering if some of you who have already been through the surgery could give me any tips or advice. If there is something you wish you'd have known before the surgery or a side effect you didn't expect, anything in hindsight you would have loved for someone to tell you?
Also...colds and viruses are starting to make thier rounds here...anyone know if the transplant would be cancelled if my son had a cold? He's sniffling right now...should be over it in two weeks, just checking, though.

[angieskidney]

Re: transplant patients- any advice ?

My son is receiving his transplant in two weeks(he's 16)...I was just wondering if some of you who have already been through the surgery could give me any tips or advice. If there is something you wish you'd have known before the surgery or a side effect you didn't expect, anything in hindsight you would have loved for someone to tell you?
Also...colds and viruses are starting to make thier rounds here...anyone know if the transplant would be cancelled if my son had a cold? He's sniffling right now...should be over it in two weeks, just checking, though.

I had my first kidney transplant when I was 16 as well.

Here are things I learned:

It hurts. Remember it is important to cough even though it hurts. Why? Because you do NOT want fluid building up in your lungs while you recover from a new kidney transplant.

I learned the hard way. I ended up with Pneumonia for the first time in my life at that time. I have had it twice since because now my lungs are weaker from that experience.

Since I was sick since I was a baby I never had normal energy. With the transplant I noticed I felt alive for the first time in my life. I also got very hungry. I never had an appitite before. I gained a lot of weight and went over board. Went from 97lbs to 130lbs in 28 days...

I wish I had known what to expect from the Prednisone they gave me. I gained chubby cheeks and didn't like that.

The medication at first made my hands shaky .. but that was medication back then and meds have changed now that they use. This was back in 1990.

With a transplant, I was put on medication that lowers the immune system A LOT! So I got sick easily. At first I was told I could not go to school for a few weeks after I went home or to the mall because they didn't want me catching anything. I was also told that even though I had chicken pox already once that I could get it again due to low immune system.

Again things have changed with years so you might want to check on anything I have said here as this is only based on my experience back then.

I have photos from back then at the beginning of my photo album: http://kidneykorner.com/AK/FlipBook.html

Oh also the incision is smaller now then back then. I realized I should mention that after I looked back on my own photos. The 2nd transplant incision I got in 2007 was much smaller even though I got a much larger kidney the 2nd time around.

[Marilyn1947]

Re: transplant patients- any advice ?

First Angie, I loved your album.You have been thru a lot. I was 58 when My kidneys failed. A whole different story. You are one brave lady.

What I found out was that ,for me ,the surgery was a lot easier than I expected. I had had
2 c-sections and a hysterectomy before and this was far easier. I think the load of steroids help.
What I wish I had known was how hard it was to see my husband (my donor) who had never been sick a day in his life, feel so awful. But it passed quickly. The other thing I found was that it was difficult after they lowered the steroids. Each time they did I was one big swinging mood mess for a couple of days so be prepared. Also watch out for the hunger. It is easy to go crazy, so have lots of good healthy stuff for him to munch on. That said, everyone is different.

I am 16 months post now and other than a wicked cold I caught from a grandaughter I have been really good. I take normal precautions, wash hands (have a purell pump in car consel) and do not let anyone at parties etc hug me!! I volunteer a lot at different places(library, museum) and go to an exercise class 3x a week. And I am 62.

I always said the only thing harder than going thru this myself would be to see my children go thru it. My heart goes out to you and my prayers to your son. It will be a new life for him,

[Evanshope]

Re: transplant patients- any advice ?

thanks so much to the two of you who replied...that's exactly the type of advice I wanted..and so personal as well. I appreciate your openess and concern.
Blessings,
Lynne

[Marilyn1947]

Re: transplant patients- any advice ?

Please keep us posted and let us know how the transplant goes. We are all pulling for him, This site has sent a lot of prayers out to so many people . I am sure it helped me.
Marilyn

[jmaryz]

Re: transplant patients- any advice ?

Evanshope,

Please tell your son that even though he may not feel like it, that it's a good idea to try to walk around a little after the transplant. Also, the anti-rejection meds are not so bad - but there can be side effects. My ankles and feet swell from the Rapamune I take. Also I now have diabetes type 2 from the transplant. It is controlled with pills and hopefully won't get worse if I eat well and (UGH!) exercise.

One thing that I think is really important is to drink a lot of water. I have noticed that my creatinine is lower if I am well hydrated.

I had a transplant at the age of 55, and am now about 10 months out. I used to do PD with a cycler at night. For me, I had pain at the incision site for about 3 months but took extra-strength tylenol and that helped. They did give me loritab (sp?) in the hospital but it just made me sick so I stopped taking it.

I think because of his young age, your son will probably heal faster than I did. Just tell him to take it easy, and to follow all of the advice of the transplant team to keep from getting sick (because his immune system will be weak).

If your son has any specific questions about my transplant journey, have him PM me on this site. I will be happy to try to answer them.

Good luck with the transplant - it really made a huge difference in the quality of my life and I am thankful for it every day.

Let us know how how everything works out.