Well things are still going better, felt pretty good for the past few days. Only had one occasion of being completely out of breath in the past few days and that was this morning.
Penn transplant team finally got back to me today, it took awhile, but I got registered and set up an interview. I will be meeting next Tuesday with the coordinator and my new specialist Dr Denis Hadjiliadis. I am so glad to finally have a name to research. I have now read several of his published papers and presentations. One I found quite interesting was his slide pack from on the legacy of Hippocrates. Since I have always been a proponent of a sound mind (let the comments begin) in a sound body I really like this historical tie in.
Another not so rosy paper he authored has a few interesting stats. The 1-month, 1-year,
3-year, 5-year, and 10-year survival rates are 92.4%, 80.6%, 65.2%, 53.8%, and 32.1%, respectively, and are statistically better than rates for patients with other diagnoses. It also stated that transplants occurred for 20% of people on the list in one year and 40% in two years
Something to keep in mind when I'm making the decision to do this or not.
I had a Dr appointment with my Endocrinologist today also, my averages and blood glucose was good. My weight is down 13 pounds since my last appointment though. I asked him a ton of questions about appetite stimulants or anything he can do to help me get back some of the weight. He did not have any ideas other than marinol or megace but will talk with his peers. I have tried marinal before (derived from marijuana), megace is progesterone (no thanks don't want boobs) so neither are much help. He did set up a blood testosterone test to see if that supplementation may help, sometimes levels drop in people with diminished respiratory.
So a big day today after several really easy ones....
Glad you got a name. Definitely something to keep the Sheldon in you busy. Knowledge is power, right? Sorry to hear the weight has dropped again. This may sound like a stupid question, but would Ensure drinks help at all? Obviously you're not going to gain a bazillion pounds from it, but maybe it may help just a slight bit.
ReplyDeletebtw...are you sure you don't want boobs? ;)
Yes, I do use nutritional shakes to add calories here and there. The issue is still
ReplyDeletethat I need to little by little add more food to my diet. I know historically when I'm sick I lose weight due to fever, labored breathing, coughing, etc., plus I just don't feel like eating. So it takes me a little while to get back on track.