liver transplant complications?

[jimbo1951]

I had a liver transplant 2 yrs. ago.  At that time, I was diagnosed with polycystic kidney disease.  I have a 25 yr history of kidney stones.  About a year ago, my urine started getting progressively darker.  I then noticed that there was a sandy, crystal type sediment which has increased in amount over time.  About 4 months ago, I started passing a mucousy like substance that almost has a flesh like quality to it with loose skin attached.  I asked the transplant clinic about this, and they said they had no idea what the problem is, but to follow-up with a urologist.  I have made an appointment, but it is two months away.  My urine is now the color of dark amber to a thick, mud like color, which seems to improve after I pass the mucous material and sandy substance.  The latest symptom is that my stomach is swollen on both sides and I have tremendous bouts of pain in the abdominal and back areas.  I quite often run a low grade temperature, and have a general feeling of fatigue.  I have hep C and have always contributed the fevers and fatigue to it.  My viral count is now 6,000,000+ but the drs. don't want to treat because of the damage it would do to my liver.  I have monthly labs done and there are some points of concern with them.  GGT=449, Alkaline Phosphatase=689, Eo% = 12.7, BA =2.1, RBC=3.62, HCT-34.7, LY-30.9.  Post transplant, my bilirubin dropped to .08, and stayed there until about 4 months ago.  It is now at .42 and appears to rising.   All of my other tests are within normal range.  I am on 1 mg. of prograf 2 X day.  

Do you have any thoughts as to what could be going on?   Could this be my liver or some type of complication from the transplant?  The transplant clinic seems very concerned about the GGT and Alkaline Phosphatase levels.  I have researched both of them, but cannot get it clear in my head how important these two tests are post transplant.

I am really worried about all of this, and would appreciate any insight.

Jimbo1951

[Thomas D Schiano, MD]

i think that you might need a liver biopsy to work this up further.  the elevated alkaline phosphatase could be related to a bile duct problem which itself could cause cholangitis and fever/right sided pain.  this occurs in 15-20% of liver transplant recipients.  in addition this elevation could be due to recurrent HCV which might then warrant treatment.  Its unlikely you developed significant cystic disease of the kidneys post-liver transplant.  the dark urine could be due to the liver if the bilirubin is abnormal.

i hope this is helpful