Hi, my husband, Gary, and I live in northern Vermont. Gary is 51 and has hep c. He has cirrhosis and was put on the transplant list at Mass General in August of this year. His MELD is 21. His diet is lots of fresh veggies and fruits, cranberry juice, water, oatmeal, cream of wheat, fish, eggs, protein powder, and one cup of coffee every morning. He takes lots of meds: xifaxan (1200mg/day), furosemide (80 mg/day), spironolactone (200 mg/day), lactulose (15 ml 3x/day), prescription zinc, prescription vit D with calcium, prescription magnisium, multivitamin w/out iron, hydricodone, tylenol, and insulin (nova log, short acting 23 units premeal and lantis 55 units every morning).
Gary is dealing with all the same things that everyone else is. Hepatic encephalopathy, low red and white blood cells, high ALT and AST, low albumin, low platelets, low eGFR, etc. . . He sleeps a lot, has abdominal pain, leg swelling, headaches, itchy skin, red spots, weight loss, leisons on his liver, nausea and more.
He was first diagnosed with Hep C in 2002. He has a tatoo, but he also was in a bad accident in 1975 and believes he had a blood transfusion then. So how he contracted the virus?, not possitive. We started seeing a hepatologist in Burlington Vt, in December of 2007. His viral load was 1.3 million. His Dr. recommended treatment, but left it up to us when we wanted to start. At the time, Gary was an owner/operator of a tractor trailer. He had a contract with Home Depot. He was doing well, working hard, making plenty of money, our third child was a senior in high school and our youngest was on her way to Chile in Sept. of 2008 for an exhange year thgouh the Rotary for her junior year in high school. The other two were in their 2nd and 4th year of college. Things were going quite well. The kids are still hanging in there, so things are still going quite well, just not for Gary. My life is not so "nifty" either, but I am hanging in there.
So anyhow, I wanted him to start the treatment as soon as possible. His strain is 1b, so that means that he had a lower chance of the treatment working, but at the time, we were told at least a 50/50 chance, maybe higher. So we started the treatments in May. By July first, there was NO WAY he was safe driving, so I forced him to quit, I filled out all the disablity paperwork and Gary continued treatments. Unfortunately, by this time last year, his blood cells were so low, platelets, hemoglobin, etc. he had to stop treatments. His viral load was down to 2500. So I had hope, but within a month after treatments stopped, they shot back up into the millions. In December he was approved for SSD (but that was a huge, huge, huge, huge ordeal. Pretty much a books worth of b.s., but we got it without a lawyer. I think I should be a consultant I learned so much!) Financially, we are hanging in there. Since we still had kids in school, we got a little extra, so that made him feel better. Gary is a proud hard working wonderful husband and father! I am so lucky to have him my life. This is a second marriage for us both, but our blended family has worked out great for us all. We met in 1997 and got married in 2001, so his son and daughter and my son and daughter all grew up together, basically.
Well that pretty much brings us to the present, give or take a lot! lol. He is now a man that is very sick. I am very worried about his survival. We have worked on our Advance Directives together. We have spent many hours crying and worring. As like everyone else, I keep hoping I will find information online that gives me a time line on his life, chance of survival, when to expect a transplant, etc. All I have found was statistics or case studies on MELD values. If you google MELD 21, I found quite a bit of disturbing information. At the MELD calculator page, I think its the Mayo one, there are other calculators to use that give you an idea of what to expect.
I guess I should stop, this is already turning into a large post, sorry. I have really enjoyed reading and getting to know some history on all your lives. My daughter would call me a "facebook stalker
" lol. It has helped me to read about
everything you all have been through. Our stories are very similar. I look forward to becoming part of this community, it looks like a good one!!