Posted 1/11/2014 3:09 PM (GMT 0)
Lena, I agree with David. My husband is the one with the disease. Themister watched the HE documentary prior to TIPS. Thank goodness I had a clue what HE was...and was not. My husband does know what HE is...but he can not tell when it is happening. This week he could not make a pot of coffee, work a remote, nor use a phone. He is not angry and mean, nor wanting to do risky things right now, just sleepy. Luckily, themister knew HE was bad when the coffee maker got the best of him. That is one of the few times themister could tell. If I was not a year into HE, I would now take him to a hospital. Since I am 24/7 with him, I am managing meds, increased Lactulose, and making certain he is safe. We knew it would get worse, not better. But we still may wind up in hospital before his Mayo appt.
Lena, themister had a really hard year when he had to quit work. He knew he could no longer support us, and felt his worth in his head, slip away. Sold everything, gave away animals he no longer could care for, put house up for sale, and started planning for what was inevitable. It is three years now since themister filed SSDI. He was 60. I can not imagine what that feels like with a teen at home and being younger than retirement age. So I can understand his feeling of giving up "right now", and depression, and some denial as to how long one may have to wait as I watched that in my home. Themister decided he would treat the Hep C, but was not going to transplant. But as he learned more he changed his mind after seeing the long term transplant folks with decent lives.
about your insurance sitch'. My husband's SSD put our household over the limit for Medicaid, but we had too many assets, as well. So we found a policy (Pre-exiting....one of the first Obamacare health insurance plans GEHA, PCIP). It cost over $435 per month. But, themister had over $100,000 in hospital, medical, and medication bills. So, it was worth it. We still had about $6,000 out of pocket on his SSD income, plus the costs of travel and hotels from our rural location to a proper hospital. We would have been bankrupt without that insurance, but it was still a great financial sacrifice. Moving where we had in-state insurance and did not need to pay hotels, plane fares, rental cars for every crisis was the smartest thing for us.
I don't know which transplant center you are looking at, nor Jeff's latest MELD. I would not count on Medicaid if you were told it will not jive with the SSD income. Look into the Idaho exchanges and check with the transplant center to be certain they accept that network. Mayo denied themister twice, out of state transplant network. And there is some way to get a special contract. Mae's brother did that with Mayo FL.
Big hugs. Keep hope!