after transplant problems?? - Kidney Disorders Message Board

kidneytranspat · 01-22-2006, 11:32 AM

I had a kidney transplant and was feeling great. Then, 3 months ago I tested positive for CMV which is now under control, but have not felt good since then. Some of symptoms still include fatigue, itching, cold symptoms, slight fever, occassionally loss of appetite, headaches, low white count, high liver (ALT) count, elevated creatine. Does anyone know what this could be??

feelbad · 01-23-2006, 08:31 AM

Just what did they do to try and treat the CMV? were you on at home IV gancyclovier at all.My son developed this about three months post liver Tx and he spent about a week in hsop with the Gan thru IV then they placed a pic line,we took him home and my hubby and i had to take turns,twice a day giving him the IV gan that came in these little balls that were like the size of a softball or something.we did this at home thing for 14 days and then he was followed up on oral Gan for about six weeks.the thing is he really never seemed to be all that 'sick" thru all of it.have they checked out and ruled out other possibilities besides the possible CMV?

you DO have alot of rather ominous symptoms that need to be much further evaled.have you told your docs or transplant co ordinator about all of these symptoms?if so,what are they telling you?you could possibly be reacting to one of the many meds you are probably on.what exactly are you taking at this point?i know when my son was first discharged post Tx,he was on nine different meds which thankfully is now only five actual tx related meds.unfortunetly,some of the very meds that make it possible for you to live with the new kidney have some very bad side effects.but at any rate,they should be treating you much more aggressively than they are.you really should be in hosp and getting tests done to get those enzymes back into range,really.i would talk with your co ordinator and your neph or the tx surgeon and start asking some questions about your overall condition and what the possibilities are here for a rejection episode.this should not be happening if everything is okay.demand some answers from those who are supposed to be caring for you and keeping a close eye on things for you.this just does not sound right to me at all.are you currently taking any sort of prednisone or medrol?keep pushing it with everyone til someone finally sees you and what is going on.Good luck and please keep me posted on anything you find out,K?hang in there,Marcia

slseem · 01-23-2006, 08:42 PM

Are you on predisone?? I had some of the same problems until they weened me down from 30mg twice a day to 5mg once a day. What anti-rejection drugs are you on? One of the drugs I take is prograf and if the levels are too high, I experience similiar problems.

slseem · 01-23-2006, 08:49 PM

How much anti-rejection drugs are you taking?

When I first had my transplant, they had me on 750mg of cellcept for about 3 months and then decreased it to 500mg. I got really sick about a year later with suspect CMV but they are not really sure. Tests show I was recently infected and they treated me for it but they still are not sure because I was going into heart and lung failure and one day I just came out of it.

During that time they increased my cellcept to 100mg and I felt like crap. Once I came back down to 500mg, I felt normal again.

If you have a low white count and your creatinine is high, fever, seems to me that your neph would be turning over stones trying to figure out whats wrong....What are they telling you??

Quote:

Originally Posted by kidneytranspat

I had a kidney transplant and was feeling great. Then, 3 months ago I tested positive for CMV which is now under control, but have not felt good since then. Some of symptoms still include fatigue, itching, cold symptoms, slight fever, occassionally loss of appetite, headaches, low white count, high liver (ALT) count, elevated creatine. Does anyone know what this could be??

kidneytranspat · 01-23-2006, 10:37 PM

I am on the lowest dose of cellcept i can be on and gengraf, prednisone. My neph. has done a lot of test and basically nothing shows up. I did test positive for the BK virus and had to have a biopsy but it showed that it was not affecting the kidney. I have been complaining about it a lot for the past couple months but since they can't find anything I am just trying to find ways to deal with it.