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Post-transplant Bumps in the Road and Rewards: Part 8

Note:   Readers should always consult their physicians before taking any action (or inaction) which may affect their health or involve decision making.

“Hmmm . . . still don’t like going to the doctor, but do so now more willingly (whatever that’s worth!)”

“Two bouts with rejection, the usual side effects of the meds, weight gain. Have had a very hard time keeping my cyclosporin levels consistent.”

“Aspergillas and adenovirus, a week and a half in the hospital with IV antibiotics.”

“Worrying about ‘catching’ something . . . it’s a whole new ballgame!”

“You need money for drugs, a good drug plan or be prepared to ask for help.”

“Perhaps, it’s a lesson in humility to accept that sometimes we need help and we must learn how to ask for it when needed.”

“There are those around you that would prefer that you remain sick so that they look strong. Be ready to ignore them.”

“And then there are the friends that disappear because they cannot deal with your illness or that you are preoccupied with your wonderful new re-life.”

“I have had some minor bouts of rejection, but nothing major. Some of the other complications I’ve had since transplant include: a hip replacement, cataracts in both eyes, gall bladder, gout, and arthritis.” (10 years post)

“With all this good luck I’ve had, there were a few weeks where I suffered a bit. The first or maybe two weeks out of my transplant were very good, but after that the heavy bombardment of drugs took their toll. The prednisone wasted my muscles away quite a lot and finding a suitable indigestion medication took some time. I would wake in the middle of the night with pains I can’t describe from indigestion. It felt like what I think having a heart attack would feel. Along with that I had some very scary nightmares that were mixed in with reality. So I didn’t look forward to sleeping at all. I would wake and then try and stay awake for the rest of the night, Literally being too scared to go back to sleep. That only lasted about three weeks fortunately.”

“Losing my hair.”

“Have had two bouts with rejection which zapped my energy and made me realize that even Super Woman has a few bad days.”

“Three weeks after transplant I went into a grade-4 rejection. I didn’t know a thing for a week! I was very close to death or so the doctor told me anyway. . . . Since then I’ve had a grade-3 rejection, a grade-2 and a grade-1. I have to do things the hard way you know. My last clinic from two months ago, I was clear of all rejection. Hurray!”

“My hair has always been thin, but since my transplant it seems to be falling out and getting thinner.”

“Yep, I too noticed . . . many other changes such as [my] dry scalp/skin of  [the] past is no more. That was one of the first things family noticed after transplant was the complexion/color. Calluses also disappeared and now have baby soft skin from feet to my ‘Chipmunk Cheeks.’ I believe it’s combination of the post-transplant meds, but mostly the body is finally getting oxygen to parts it has lacked for years.”

“HAIRY HAIRY HAIRY!!!! Cyclosporin does it!”

“Hair growth from meds.”

“ Predisone ‘mood swings.’”

“And don’t forget the FAT . . . Prednisone usually the culprit here. VERY hard to control and get rid of! Shows up everywhere, but most noticeable in the face and your body’s favorite place (mine is my gut!). Plan on a good solid 20–30 pounds!”

“Horrible indigestion. Oh yeah, gall bladder quit and had to be removed.”

“Something is wrong with my leg. It’s got the doctors puzzled. Circulation is progressively decreasing to my lower leg and foot. From the sonograms and MRIs and MRA (like MRI only Angiogram— with dye to see the arteries), I have no significant clot. I was worried and still am about deep vein thrombosis. But it’s not profound enough for conclusive diagnosis as such. In these situations, according to what I read, the underlying disease is usually cancer.”

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Updated May 24, 2005