Ascites

roxie47,

I looked back through your posts and see that you are going to a major medical center in WA...if your care was with a local GI, I would have recommended you escalate, but I see that you are in good hands.

What is the average MELD for transplantation at your center? YOu can look that up on the UNOS site or the hospital may tell you.

My partner Mike, once affiliated with the TP center in Miami ggot on a good regimen of meds and his MELD dropped from 26 to in the teens like Chuck...and though Mike was sicker and sicker, there was nothing to do until he met that magic number for transplantation. This issue is always the availability of donors and who can really pray for some young person to be declared brain dead and be in good health otherwise...a sad sad business all around. He was transplanted at 22, than goodness. He is now 5 years post TP, 2 years post Hep C treatment, and not on dialysis (yet). Life is good. Actually he is playing golf this morning, Fathers Day, woo hoo.

Several of our members who have uncontrolled ascites have had a TIPS procedure. Look that up. It seems to work on teh ascites, but some have had really bad Hepatic Encephalopathy afterwards. It is a risk. They call this the bridge to transplant...making the patient more comfortable during the wait. Look up HE also.

Mike had the edema in his legs but no ascites and they used 2 diuretics, lasix and spironolactone (a potassium sparing med). Each day he was to weigh himself and depending on where that was his dosage changed. He has ongoing kidney problems afterwards...but, his nephrologist chuckles at this and says tey had dialysis and transplantation for that...they don't have any in between dialysis for livers!

Mike zoomed up on the list just 3 months before TP because they found a tumor in his liver. YOu get exception points I think. they have changed the rules since Mike's TP in 2011, but you still get tumor points. It was so weird, to be thankful he had cancer....that saved his live and so far has not recurred in the new liver.

Look back at some of "themiz" posts. Her hubby, we call "themister". His situation is about like Chucks. Once he cleared the Hep C (on Interferon...what a regimen that must have been!) his MELD stayed in the teens and he had the Tips and then really bad HE for a long time. Then he hit a plateau, felt better, no HE, and he still waits.

I'm sorry I couldn't be more encouraging.

Hugs,
Mama Lama

I have had TIPS for 7 years or so now. Chronic ascites and getting drained of 12 liters per week. It was miserable. That went on for about 4 months before I made listing status. I'm a alcoholic and the rules differ greatly for getting transplant or TIPS listing due to substance abuse. Initially took Diuretics but some pretty adverse effects and Kidney damaging resulted. I was taken off or decreased use and dosage to a minimum until my MELD reached 18 and completed sobriety and pre-transplant requirements. I became eligible for TIPS a week later.

Hate to say it but it's a "wait and see game". They weigh out your chances of TIPS as a last option as if you was to get a actual transplant. You have to be sick enough (actually high MELD which doesn't always reflect how sick a person is feeling). Sounds as if he's at the threshold of TIPS option. TIPS is not a transplant but allows you to make it to transplant when your score lingers below transplant and ascites is life threatening. Consequences are as ML mentioned. Average people with surgery and anesthetics risk death, He's sick so potential hazard increases. Although TIPS has become routine mistakes can happen while maneuvering the shunt into place. Once the surgery is done two other nasty things can happen. It doesn't take and wasn't placed precisely ( A hair width distance placement for it to work correctly. Perhaps the worse of the potential negatives is increased encephalopathy.

I have been fortunate. No bad problems. Well....... compared to prior experience with ESLD. Encephalopathy has escalated a bit but no ascites. No diuretics, No draining, No Bi-weekly hospital visits and MELD at last check was 8. Yes, I stumble around a bit. Head foggy at times and memory fades in and out but as long as I take my Meds I'm fine. Most people don't even notice. I have always been a bit of a loon anyhow. Hope this helps with your questions.


Ziff

No problem Roxie. Pop in and keep us posted when you can. There is always someone who has walked in your shoes here. My best to you and yours.


Ziff