I know I've bet "quiet" for awhile, there just hasn't been much to report, other than my condition seems to be getting worse, at a higher rate than I would like. I am now at the point that even the briefest effort (standing up) rapidly depleats my Oxygen levels, to the point that I must stop and recuperate. Very discouraging. However, with adequate Oxygen my levels do come up fairly quickly, and then I'm just fine.
But it's making everything exponentially more difficult. So fixing food is a strain, which only compounds my lack of desire to eat. That in turn of course gives me less energy, and only exacerbates the whole situation. A good Friend, Dan Snyder, has been very attentive and a big help, and deserves a big tip of the Hat - THANK YOU DAN.
I met with my Pulmonologist, Dr. Kahn, yesterday - for a follow-up appointment. She is well aware of my declining status, and for the first time we (she) actually noticed that my fingernails had turned blue... extended period of low Oxygen levels. On my visit last month she prescribed a treatment of PREDNISONE. It's a steroid treatment and lowers the immune system, but also is supposed to stimulate the appetite, so we gave it a go. Well it didn't do much, either for my lungs or my appetite. She did however also prescribe the PIE DIET, which has been a huge success. 3 slices of pie a day, any kind, any way. Now that's been great.NOW - The BIG NEWS from yesterday, Dr. Kahn is applying for me to be part of a new Drug Test (I'll be the first in Hawaii). So we did all the paperwork yesterday, I also had a couple of blood tests to check my Liver and such (all there were just fine). So, I hope to be hearing from them soon. The drug is called ESBRIET (Pirfenidone) and is a $200+ pill!! Hopefully Insurance will cover most of it and I've also applied for medication assistance - so we'll see. The first 45 days are free, which is good, but also the program is subject to change or cancellation at any time.
"Let go of what was,
accept what is, and
have faith in
what will be."
- Sonia Ricotti
