post transplant hyperglycemia and insomnia, intense cramps

[Evanshope]

my son was transplanted on oct. 6th; my husband donated a kidney for him. He was not on dialysis at the time, was almost failed w/ dialysis being scheduled if my husband would've had any delay. The great news is that the sugery was a success, no rejection so far; however, I had no idea how complicated the post transplant process really is, there are so many side effects that are tough for him to deal with(not being ungrateful or negative, but as a parent it's hard to watch your child suffer....he's 16).
Any of you post transplant had high blood sugar or insomnia(like not sleeping for 2 days). My son is now on insulin injections which, we are told, should be temporary. He's been switched from Prograf to Gengraf to try and bring his sugar down(it goes above 600-700 w/o insulin). Hoping this will level out. But what about this insomnia thing, it's starting to depress him and he's lacking energy and messing up his schedule since he wants to nap. We think it's the Prednisone, which is still at 20mg for now until he weans further down(will end up on 5mg).
The other horrible side effect is the intense charlie-horse type cramping in his hands, feet, toes, neck, legs..almost any place. His doc is having a hard time figuring out why. His legs stay sore for days afterward. His labs look good, no deficiencies, but he's really suffering w/ paralyzing pain that twists him into wierd posistions and freezes him there until we massage it out or apply heat
Any of you already had these issues? Just want some advice and reassurance that there are better days ahead. So far my son doesn't feel any better than he did before the transplant because of the side effects. It's tough because he was pretty sick before the surgery and he had his heart set on getting away from pain. He now feels like a pin cushion w/ the constant blood draws, insulin shots and blood sugar pricks, plus he has no energy, not sleeping and the cramps. I know it's temporary.....but telling a teenager to wait hardly works Anyone out there can tell me how long it took to feel 'normal'? We are 4 weeks post transplant.
Thanks,
Lynne

[Gingerpkd]

It sounds like most of the reactions are from his medications. The sleeplessness should improve as his Prednisone dose is decreased. I hardly slept for the first couple of weeks post transplant. My prednisone was tapered from 20mg to 2.5mg over 2 months and sleep improved greatly once the dose was decreased even to 10mg. I only needed insulin for the first 3 days post transplant and that was due to the massive doses of steroids given during and immediately after the surgery. Steroids are known for raising glucose levels and that is also a common side effect of Prograf. My meds are Neoral, Cellcept and prednisone.

For the cramping, is there any chance that he is getting dehydrated? Are his Potassium, Magnesium and Phosphorus levels ok?

I felt fine about 2 months after being transplanted and really back to my normal self after 6-9 months. I had been on dialysis and just had a kidney removed 6 weeks before my transpIant so it probably took me a bit longer to recover. It does take some time for the body to adjust to a new functioning kidney. It is also hard for a teenager who may have expected to be able to be very active now with a new kidney. Have patience as things should improve soon as his medication doses are decreased. Patience is soooo hard for teens!!

My transplant was 2 1/2 years ago and I am much older.

[Evanshope]

thanks for your input and experiences..it always helps to hear from someone whose been there already.
His potassium, phosphorus and magnesium are all normal according to his labs...the doc seems baffled by it. It would seem like it would be some type of med reaction...although he had intense cramping before the transplant, but this is different because it's not just leg cramps..it hits him anywhere and leaves him sore for days afterward.
I know some of this will resolve in time...just hoping it's sooner rather than later