What are some things u wish u were told BEFORE transplant?

[gothiclovemonkey]

What are some things u wish u were told BEFORE transplant?

If you had to do it again would u?

[rsudock]

you may get high blood sugar resulting in the use of insulin b/c of the Prograf....that was a bit of a slap in the face....

xo,
R

[sutphendriver]

the weight gain associated with the steroids.  I gained 70lbs over a few years.  When my transplant failed and they took me off the steroids, I lost 81lbs.  It didnt matter how hard I excersised,  I had to eat constantly or get sick.

[gothiclovemonkey]

yikes with diabetes running in my family, this is no good.
also weight gain, after it took this long to get the weight off FOR transplant, that would make me a bit angry! lol

[natnnnat]

"...that the medication would give you cancer.  That I would have trouble with my bowels. That getting the transplant is just the start.  I had to find that out for myself.  Cos I thought that once you got it that would be it.  But it was just the start of a very long road," says Gregory, from another room.  I know from asking him other times, that he is glad of his transplant and yes he would do it over again.  Just to check, I ask him again:  "Yes, definitely.  It's worth it, every minute of it.  Even though you go through a lot of pain and bad experiences, its worth every second of it."

[Brightsky69]

This is my 2nd transplant so not much was a surprise. Somethings were new...like the drain line they put in after the transplant. Never had that before. Yucky.

[RightSide]

Two things:

1.  That I would have to travel back to the transplant clinic every week for blood tests and consultations, at least for the first three months.  (For me, that's a very long drive and a very long time to wait before eating anything, since I must take my anti-rejection meds before eating like I do on the other days.)

2.  That it's practically expected that I'll catch at least one or two low-grade infections in the first 6 months after transplant.

My transplant was January 26, 2011.  And already I've picked up jock itch (haven't had that in 20 years) and now I just got a mild sinus infection (stuffy nose and discolored yellow post nasal drainage).  I haven't had time to tell my transplant team about the sinus infection yet, but I did tell them about the jock itch. And they said "Sure, topical fungus infections are quite common."  They didn't tell me that before I got the transplant though.

[Sugarlump]

Rightside I am 4 months post tx and still on weekly visits (150 miles roundtrip) due to medication problrms.  Takes big chunk of day.

[Ang]

pretty much knew what to look for,was given plenty of reading material re: anti rejection meds and what they can do.
do it again- won't have to i hope

[rsudock]

Another thing be careful about going to public gyms. (Rightside's comment about jock itch reminded me about something) Post transplant like 7 or 8 years when I was in college I kept going to this gym and and working out on this machine you had to put your thigh on and push. Well I got RINGWORM!!! At first I couldn't figure it out and I went to the gyn doc and as soon as he saw it he was like, "Gosh you never seen ring worm before?" SO I STOPPED using the college's gym asap. It took forever to go away and I even had to use some type of liquid metal stuff to rub on it to make it go away...the over the counter stuff wouldn't work....nasty!

Oh I make sure to paint my toenails before transplant b/c it might me awhile before you can bend over and do it yourself!!

Again yes I would get a tranplant again.

xo,
r

[wj13us]

I wish they would have told me it would last 38+ years.  Would have saved me a a LOT of worry.

Bill

[Brightsky69]

wj13us - 38 years is awesome!!
Mine is plugging along. I worry too about some stuff like when my socks leave a slight impression. I start to think OMG the kidney isn't getting rid of all the fluid!!!!
My doc always checks for puffy ankles and said to me if you notice swollen ankles then let us know and we'll prescribe a diuretic....like it's no biggie.