Living Well with a Bad Diagnosis - Lung Disease

Wednesday, April 20, 2016

Fiddling About

It was a fun rehearsal of the Irish Fiddling group last night all in preparation of my first public appearance with them on Friday evening. We are playing in the area usually filled with four tables and chairs for people to eat in the local Organic Market - kind of like Whole Foods. From 5-7PM, we will be playing as people come through the doors right in front of us. Leslie was telling me that it is amazing to watch them as they are in a hurry after work and suddenly, they change when they hear the music. Smile. Relax. Pause, before they buy what they need and head home. Should be fun.

Today is going to be a wild day. I didn't sleep well last night and I have a long to-do list. By 8AM, I want to be out the door heading over the pass to food shop then back home to get my toe nails done. We found I didn't have some of the music last night so I will be making copies then bringing the originals with me to orchestra rehearsal tonight to give back to their owners. In the afternoon somewhere, I am going to need a nap to get through the orchestra rehearsal tonight.

Per Dr. K's suggestion, I called the pulmonary function lab to see if they could move up my appointment. Yes! Thursday at 1PM. I am expecting to hear from the transplant clinic today or tomorrow to make an appointment to see them. It won't be as scary this time as it was five years ago.

Other news from rehab: Do you remember Mitch? He was the tall, young sheriff who had a horrible liver disease. He had high pressure in the arteries in his liver, which also kicked in an interstitial lung disease. It was so sad to watch him struggle, sometimes bringing his young boys to rehab if they didn't have school. My university hospital turned down three of his potential donors and finally, after almost two years, he is having the liver transplant on Monday. He has been told that after six months, they are expecting his lung disease to abate. Wouldn't that be marvelous?

No comments: