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??

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

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.

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??

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??

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.

have they actually done any real in depth testing on your liver?Have you had an ultrasound done on the liver?Marcia

As far as liver test go, they have only done lab work no ultrasounds or anything. I don't want to keep getting on them about not feeling good but i mean something is causing me to feel this way. They say as far as they can tell everything is good with the kidney and I am not sure if that is all they are really looking at or what.

well,it would make good sense that if everything is just wonderful with your kidneys to actually consider that maybe,just maybe,it might be something else that is actually causing the problem???duh.some docs really never cease to totally amaze me.i would THINK? that they would be at least looking much more closely at the liver and trying to rule in or out other possibilities here considering the way you are currently feeling.i would start demanding that someone really take this a bit more seriously and start doing at least a bit of testing on other organs or doing some much deeper bloodwork or something??i mean geez,havent you suffered enough already?i would be demanding answers right now form them.this really is ridiculous.start kickin some doctor butt.and keep kickin til someone responds.hang in there.Marcia

I had a kidney transplant last June and inherited CMV from the kidney. It only took a few weeks for the symptoms of CMV to show themselves. I can best describe the symptoms as like bad flu, extreme fatigue and weakness, increased creatinine levels, intolerance to hot and cold temperatures and depression.

I was treated with the usual medication but it took at least 5 months before I started to feel well again. I didn't have these symptoms continuously, the CMV would raise its head for a week or two then I would feel better for the next month only for the CMV symptoms to come back again. I was checked regularly for CMV levels with the last test coming back inconclusive in Nov last year. I have been CMV symptom free since last November and hope I have seen the back of it...

I hope you get past this soon I know how debilitating it can be... :)

I didn't realize that CMV could repeat like that,thats gotta really suck.The wierd thing about when my son had this was that he really didn't feel or actually act like he was really even sick.and more or less was that way thru out the duration of treatment with the at home two a day IVs of the gan.maybe they just happened to catch it really early.he was ,at that time still getting the bloodwork every other week as he was still prEtty recently transplanted.or maybe it shows itself differently in the kidneys vs when it is in the liver,like my sons case.inter****ng tho.glad you are finally 'free" of it.Marcia

Ta Marcia

I think it's possibly different for everyone in regards to how CMV affects them. My CMV was stubborn and didn't want to go whereas in others it's treated easily and quickly. When I was in hospital and on a drip there was a man in an opposite bed who's CMV figures was in the millions and mine was in the low thousands. I felt really bad but he felt OK, work that one out. I have seen him on a few occasions since and he tells me the CMV hasn't recurred...

Apparently CMV is officially declared beaten when the CMV anti-body is produced, my anti-bodys just took a little longer than some to develop. It was explained to me that the high levels of cyclosplorine I was on at the time resulted in a very dampened down immune system therefore making it very difficult for my body to produce those nice anti-bodys...

Hope your son is OK :)