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roxie47
Regular Member


Date Joined Oct 2011
Total Posts : 86
   Posted 6/18/2016 11:37 PM (GMT -6)   
Its been a long time since I visited this forum. My husband Chuck has gone through the Harvoni "cure" and has been non detected for almost a year. Since about 3 months ago, he has had Ascites. He has been getting tapped every two weeks and they are getting 6-8 liters of fluid every tap. He has developed bad ascites in his feet and legs. All they tell him is to wear compression socks but the trouble is that he is so swollen I can't get the socks on. They took him off his diuretics because they said they were damaging his kidneys. about a month ago I asked the doc what his MELD score was and she said 18. Does anyone know how to compress the legs without the socks? I think I'm going to ask them to do bloodwork to check amonia levels, I see signs that there may be something going on there. Thanks for reading. Pat

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 6/19/2016 9:00 AM (GMT -6)   
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
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

roxie47
Regular Member


Date Joined Oct 2011
Total Posts : 86
   Posted 6/19/2016 10:02 AM (GMT -6)   
thanks Mama Lama, they won't let Chuck take his diuretics, they say if he does his kidneys will fail. As to the TIPS I've asked about that to and his doc says that that is a last resort? How bad does it have to get? I'm slowly going crazy.
Only in the darkness , are you able to see the stars.
- martin luther king

Cirrhosis, Hep C, Type 1 Diabetic

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 6/19/2016 8:23 PM (GMT -6)   
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
"The truth will set you free, but not before it pisses you off."

roxie47
Regular Member


Date Joined Oct 2011
Total Posts : 86
   Posted 6/21/2016 5:57 PM (GMT -6)   
Ziff, sorry for not getting back to you sooner, been at OHSU and have to go back tomorrow to see liver doc. I do appreciate your post, I should be grateful that Chuck isn't as bad as what you described. I will be checking in more frequently now, will need the support I get here. Thank you so much. Pat
Only in the darkness , are you able to see the stars.
- martin luther king

Cirrhosis, Hep C, Type 1 Diabetic

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 6/21/2016 7:04 PM (GMT -6)   
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
"The truth will set you free, but not before it pisses you off."
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