Tuesday, October 29, 2013

Hard post to write

I've not posted much this year, having been taken by ambulance to the university hospital down in NC 6 times in 8 months (Feb 1-Oct 3) and then time at home to recuperate. 

My liver disease has finally become worse, after a long 'remission', and recently my doctors have diagnosed the beginnings of hepatic encephalopathy (HE) from high ammonia levels. My liver has quit making enough enzymes to fully digest proteins, and the undigested proteins in the intestines cause ammonia build-up. The ammonia affects the brain.

My plan is to move to Asheville, NC in the spring where good health care isn't a 2-1/2 hour trip each way (I'm going 1-2X a month now), and where there is excellent hospice when I finally need it. I lived in Asheville for years and still have many friends there, so I'll have support and a sense of community. Asheville is very alive, and has half a dozen natural foods grocery stores. The closest ones to me now are 125+ miles away.

I'll have to find shared quarters, and store a lot of stuff I don't sell here first, as the COL in Asheville is high, but the medical trade-off is worth it. Besides I have LOTS of stored foods and hopefully will find a place with room somewhere for my 2 full freezers.

If lucky I may have more than a year... a lot depends on a new med that's $1,000/month. I don't have the med yet as no local pharmacies stock it, but it IS now on order. The med I have to reduce ammonia is disgusting as it causes very abrupt diarrhea, but my ammonia level is slowly coming down. Maybe not enough soon enough, only Time will tell.

I WILL post from time to time, esp. in the dead of winter when I can't do much else except sort and pack (and that gets old quickly, not to mention it's tiring( but it won't be consistent. I have very little energy now and I'm losing weight.