ascities

hi raggadyann17 and welcome,
stage 3 fibrosis will not cause these serious symptoms. stage 3 fibrosis, means he has hepatitis. but not quite cirrhosis. but the few liver tests you posted are serious.. liver disease is also, very hard on the kidneys..

what has his transplant team told him so far? they should handle the ascities..

you gave me very little info, but let me know how it goes

Hi ra17,

Your other half is having a rough patch.

I wonder if he is getting care at a major medical center with a hepatologist who specializes in liver disease. My partner, Mike, was working with a community GI doc and he did not escalate Mike's care soon enough and Mike was one sick dude before we got a referral to U Miami Transplant Center.

Mike had viral Hep, Hep C...but he also had other liver issues: alcoholic cirrhosis, hemachromatosis, and liver cancer-heptocellular carcinoma. Any of those could cause liver failure. He did the 6 months sobriety thing while at death's door, reversed the hemachromatosis somehow (not sure, it just stopped...too much iron in blood), and at transplant they removed the cancer with the old liver. He still had Hep C after transplant, but he got meds for that when the new meds were finally available in 2014.
At the center they started Mike on a regimen that slowed down the progression of the disease. Xifaxan and lactulose treated his hepatic encelopathy (brain changes causing crazy and angry behavior), they put him on a potassium sparing that helped with retaining fluids (he didn't get ascites, rather edema from feet to groin that was pretty awful...they don't drain that kind, rather the meds help), and they put him in the hospital about once a month to balance his electrolytes. Some with ascites have a TIPS procedure (look that one up.) One of our members was able to stave off needing a transplant for years with that Tips surgery.

Mike, by the way, is 7 years post transplant now and doing very well. He has the opposite of your situation. He has a nice new liver, but has Stage 3 kidney disease that they track all the time...dialysis not needed at this time, but they watch him carefully. His nephrologist said she would put him on a transplant for that if it got really bad. I worry he would age out of that opportunity and just think he needs to make each day he has now be the best it can be.

Good luck with all this. If you have any specific questions, give us a shout.

Mama Lama

he is not a drinker at all, had kidney transplant back in augt, however had liver disease p\Prior but was stage 2-3 fibrosis of the liver and they had no idea what was causing it then & yes he see Dr's through transplant center so has Liver Dr with them also. She feels it's a complication associated with Kidney transplant since this is 1st time he ever had Jaundice. I believe his Body NEVER recovered from when he went septis 8yrs ago & almost died at least once a year since. And most people have Liver issues 1st & then Kidney disease but not him nothing normal bout him. Just makes no sense to me.

Now they know the cause of the ascities and jaundice.. I hope the change in meds will work. I read that transplant meds can be the culprit. azathioprine in particular.

As you said, it can be a couple different things. hopefully the ERCP will be definitive.

Fingers crossed for you and him..

So he had special procedure done ERCP & still no answers they thought anti reject meds were causing issues & now they checking into Heart might be possible cause all I know is this NOT knowing is NOT easy it's like watching him die a slow death,getting sicker & sicker & seems that theses Dr. now day don't know much of anything. I am so beside myself with all this been caring for my sick hubby going on 8yrs this July.