Thinking my body is mad at me for getting rid of my hep c

Haven't been here for a while,it's been a year of ups and downs just like everyone else here,but I needed to vent for a minute since I can't sleep again.i actually started on the new hep c drugs this time last yr and had greats results,undetected after 2nd week thru the next 6mos(Yeah).I did have a few problems along the way,I never do anything the easy way,like bili levels to 6,etc screwed up lads that sometimes made me go in twice a week and I did have to talk my Doc into not stopping the meds,by promising him I would drink a gallon of water a day to get bili level down.ANYway now that I'm cure my body has liver and spleen and varicles and lungs all are taking turns acting out,I really think they miss their hep c,they had him for 17 yrs.from 2bouts of pneumonia,plates let hanging out in the 50's/60's,and this week while I finally got well enough to go on vacation and checked in,I had my first bleed and spent the week in the ICU.im wondering if I should have left the hep c alone.

I am sorry to hear about the bleed, Hep 97. Cirrhosis stinks. Are you seeing a hepatologist with a transplant center?

Like you, themister also had cirrhosis prior to treatment. He had bleeds, and a TIPS was done when he was dx with varices in the cardia. That was just 6 months after he obtained SVR.

Nothing about liver disease is easy. Know we care and are here for you. Big Hugs

Glad to hear you are with a good doc. Unfortunately, or fortunately, one can live with decompensated liver disease for a long time...and wait a long time for TP once listed... as there are not enough livers to go around. Note "living" is a broad term. The fatigue and other symptoms can be very disabling. Mike was exhausted for years. Even now, post TP, he is alive, but he has to rest more often than in his younger days, he is active, but gets injured easily (various tendon problems keep cropping up), he has other problems that were never a problem before...cardiac, skin cancers, kidney disease...so he is not perfect. He is glad to be with us in his reduced capacity...or maybe he is just getting old. He plays golf, enjoys his football games on TV, reads like crazy, and cooks all our meals (thank goodness). And he is a good sport.

Hoping the best for you,
Mama Lama

Your gi dr should offer you a referral to hepatology. Period

You need a detailed evaluation, and a action plan.

Don't fall in love with your Drs.

I am sorry, Hep 97. I remember going through this similar situation with themister. I don't like hearing the bands could not all be placed. Did anyone mention a possible TIPS? Also, have you calculated your MELD score from your recent labs? Here is a link for that:

www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-na-model



From the VA website:

Decompensated Cirrhosis : If you experience any of the problems below, your disease has progressed to decompensated cirrhosis. You are at risk of dying from life threatening complications of liver disease, unless your sick liver can be replaced by a healthy liver.

Bleeding varacies (Internal Bleeding)
Ascites
Encephalopathy
Jaundice



You can file online for Social Security Disability. Here is a link to the application to open a claim.

/secure.ssa.gov/iClaim/dib

You must be disabled 5 full calendar months in a row before you will be eligible for benefits.

There is a question that asks if illness is expected to end in death. You say yes. (The only cure for cirrhosis is a liver transplant).

This will give you a screen that says, "Illness Expected to End in Death". It advises you to call the SSA office to speed up your claim. My husband did this and his case was expedited. His claim was filed during an April. He received his Award Letter that July. His first check was Sept of that year. Medicare is a two year wait.

I hope this helps you get started with your claim, Hep 97. I know this is not what you hoped for after curing Hep C. Big Hugs

Hep 97,

Here is a really important piece of the puzzle: /www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm

Mike was too ill to work for years. And when he tried to work it ended badly more than one time. He would miss because he was having bad days, or would get confused or grumpy at work and not perform well or get in arguments that my REAL Mike would not have. He had increasing episodes of HE that were not diagnosed.

And his labs weren't BAD enough.

By the time his labs WERE bad enough he could hardly stay awake or find the toilet by himself!

And by then he had not worked in a long time and they disqualify you if you are not working so many quarters. It is a disgrace to work your whole life and then not be able to look after yourself.

One thing worked well for our family is our marital status...partners for 35 years, but not married. He qualified for Medicaid as a single person. No car, no house, no job.

It is a hard decision you face.

My heart goes out to you,

Hugs,

Mama Lama

What do you labs look like?