Aside from a liver transplant (which I wasn’t sick enough for and many die waiting for) there was nothing. That was in 2015.
Luckily my disease remained stable for 2 years. I made some lifestyle changes. I stopped drinking sodas and eating foods with preservatives. I walked as much as my body would let me. I starting seeing an Endocrinologist and a Rheumatologist. I prayed- a lot!
In 2018 I learned of a clinical trial for my form of liver disease and began the screening process in March. The clinical trial is a double-blind trial. That’s means I would either get the actual trial drug or I would get placebo- a sugar pill. I wasn’t worried about getting the placebo. I wasn’t taking anything anyway so it wouldn’t be a loss of anything except my time, and I was getting paid for my time too. $150 each visit to cover my commute, gas and parking. I was 100% in if they would accept me. And they did.
That was 6 months ago.
Since then I’ve developed drug side effects. I have a mean rash on my face, chronic constipation, bloating and joint pain. I was pretty certain the pills I had been taking was the actual trial drug and not just placebo.
Last week I had my month 6 ultrasound, fibroscan, blood work and scans. (The scans I had had before the trial showed a very cirrhotic inflamed liver. Dr. G said there was “progression.”)
The scans last week showed a smaller, healthier liver. I was elated. The drug is working. While I look and feel a bit sicker- my liver is getting better. It’s a trade off right now I guess.
Research is so important. Don’t be afraid of clinical trials! Clinical trials and participating in clinical trials will help scientists find the right dose and right combination to treat and possibility cure certain diseases. They can also be viable treatment options for people with untreatable diseases- like me!