post transplant problems

[pumpkinpug]

a year ago my husb. aged 61 had a liver transplant. everything was great for first 7 mths. Then they changed his transplant meds from prograf and cellcept to rapamune and cell cept. Thats when it all went bad. He went into resp. arrest 4 times in 1 month, kidney failure, acted like he was drugged, twitched, and spent many weeks in the hosp. We tried to tell the docs that it was the new meds, he was also on vancomycin, and they would not listen they kept saying it was the pain meds he had been taking for years but we knew better. Finally after a lot of arguing and insisting they took him off the rapamune and in 2 days he was a lot better. He came home and then in about 2 months he started swelling, and going into resp distress and heart failure from all the fluid he would go into the hosp. they would put him on iv lasix and in about 10 days would lose 65 lbs of fluid come home and in aprox. 2 weeks swell back up and continues to do this. Last night we had to take him to the e.r. his oxygen levels were 57 and he had to be inhubated. One hospital tells us that everything points to the new liver, but the hosp where he got his transplant has yet to tell us anything. We are so stressed out and all I do is cry because just like last night I am so afraid he will go into resp arrest and die before we can get hin to a hosp. I have read lately about the rapamune causing many problems in transplant patients, but he has been off it for months Please any help would be so appreciated, the stress is just too much

[Thomas D Schiano, MD]

there could be cardiac dysfunction or liver outflow dysfunction.  rapamune can cause pleural effusions and edema.  generally there may be a multiorgan involvement--a little bit of renal dysfunction too.

[Thomas D Schiano, MD]

rapamune can cause a lot of acute lung injury issues but i am not aware of any long-term sequelae from its use.

[pumpkinpug]

thanks for so much help, just trying to figure all this out every doctor he sees has a different theory, all i know is that he did great for 7 months and i am not saying it really was the rapamune but thats when it all began, while he was on the rapa he went into resp failure 5 times in 3 mths, kind of scary, can the rapamune have long term effects, i know the fda has just put new warnings on the labeling or soon to put new warnings on.like i said thank you so much

[pumpkinpug]

He is a smoker, and has some problems, but are told that is not it. Just got out of hosp. once again lost another 30 lbs of fluid and when he went in his oxygen levels were 58, his lungs were filled with fluid along with swollen abdomen, groin, legs, feet still not getting any answers, doctors avoid us, said maybe its too much salt, he has been home 3 days and cut salt almost out and once again is starting to swell, and showing same signs.They did a biopsy but told us the results were not bacy yet

[Thomas D Schiano, MD]

rapamune can cause pulmonary problems and is difficult to tolerate but i do not think what is going on currently is related to the rapamune.  could be an opportunistic infection.  does he have emphysema or another chronic lung disease?