Living Well with a Bad Diagnosis - Lung Disease

Thursday, May 5, 2016

Sad News

It is with such a heavy heart that I have to share that my rehab boy Dick died yesterday. His son phoned last night. He died at home surrounded by two of his sons. My heart just broke but I know his pain had ended. I had just seen him in rehab class three weeks ago. Awful. I had to break the news to Sherman. The son promised to phone again when the services are set. I will miss that very funny, naughty, thoughtful, incorrigible, sweet man. He was a joy.

We are up having coffee at 5AM and will be ready to hit the road by 7Am. We have a long drive into the city, again. We visited Dr. K. yesterday, we reviewed why I am moving forward with lung transplants and was given the information that I probably will not get them soon. I just don't have the numbers. I'm not sick enough.

I do have some changes to my activities of daily living - Michael helps me in the gardens and laundry and food shopping - but not something like needing supplemental oxygen 24/7. She did set up a test to see if I do need to begin using oxygen full time and also to check a protein. Apparently, since I have been on prednisone and azathioprine for so many years, it suppresses a protein, which allows me to get ill easier. She thinks that was why I have been so ill for such a long period of time the past two years. Dr. K. said that if those numbers are low, she can bring them up.

The orchestra rehearsal last night was brutal. There was a part in the "Selections of West Side Story" where I am featured. I love that except the conductor kept slowing down. The orchestra members kept complaining. Finally, they all said to me to keep the rhythm, ignore the conductor and they will follow me. OMG! I am going to do it during the dress rehearsal next Wednesday night and we will see if it works or falls apart. No piece is clean. No piece is ready to be performed. It is going to be interesting.

So, when I got home at 10PM, I was exhilarated and just could not settle down for sleep. With less then five hours of sleep, I hope to make it through the rough interviewing process at the transplant clinic, food shopping afterwards then home for a long nap.

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