Well things aren't wonderful.
I'm a stubborn person. Have been my whole life. I'm opinionated and I know what I want. That can make me a difficult patient. Don't get me wrong I have an EXCELLENT relationship with my team of doctors. So great in fact I have personal cell phones I can call if I ever need anything. With that being said we've had our go arounds with what is "right" for me. Everyone is different.
A few weeks ago I went out to Cleveland for a transplant follow up. Things did not go the way I hoped. My lung function was way down. 15% from my baseline actually. Immediate red flag. My blood work also showed signs of new "bugs." These things called Donor Specific Antibodies (DSA) popped up. These are not good. It means my donated lungs are creating antibodies to fight my natural cells - basically rejection. SO I have to go back to Cleveland on the 9th of November for another lung function test, more blood work, chest x-ray, and a bronchoscope. During the bronch they will biopsy my lungs and be able to tell how serious the rejection is. Acute rejection is the "good" kind. Chronic rejection is harder to treat. But i won't really know anymore until then. In the mean time I'm on high dose prednisone, which is a steroid. Prednisone makes me hungry all the time, along with keeping me awake at night cause my brain wont shut off and makes me moody. I'm very grateful for Brian for dealing with me the last few weeks. Its been crazy.
On top of that stuff, the past few days have been rough. Ive been more short of breathe and extremely tired. So off to the doctors I went. Well thanks to the high dose prednisone my sugar levels have been sky high - which we have decided is the root of this latest issues. They also made do a "walk test," which is where they hook you up the 02 monitor and make you walk around to see how your 02 levels do. We discovered doing this that my 02 level drop down when I'm exerting myself. SOOOOOOOOOO I been banished from working until I go see Cleveland and get this rejection under control.
Most people would love a letter from the doctor saying they can miss work for a little bit. But Ive already put in that time - years for that matter. I want to work. Don't get me wrong there are days i wake up and grumble about having to go to work BUT I'm glad I can get up and go work. It gives me some purpose in my day. So it drives me crazy that I'm not allowed to go to work. I HATE being told that. I'm all about proving you wrong. Don't put limits on my life. I'll break them every time.
So reluctantly I'll listen to the Drs and stay home for a few days and soak in my puppy therapy. But i cant wait to get back out to Cleveland and figure this mess out. I'm ready to feel good again and get this back on track. Tired of being sick and tired. I'll update again as soon as I know more.