Living Well with a Bad Diagnosis - Lung Disease

Thursday, September 22, 2016

Research Coming

The 8th Annual ILD Luncheon was lovely. Besides the choices of chicken, beef or vegetable kabobs, there was rice, fruit and salad. All the pulmonary biggies were there and gave short updates before answering questions. The entire transplant team was present, most of the PFT lab techs, clinic managers, head of research and the pulmonary chair all were introduced. There were also approximately eight lung transplant patients present, all looking fabulous.

Research. I was able to get a list of ILD studies happening at my university hospital but most are for IPF patients only. I vow to you, dear reader, that I will attend the October meeting of the ILD Support Group when the latest drug trials and research will be presented to the group. I LOVE these meetings as it gives me hope, not only for myself but for my son and his future children. My disease must have a genetic predisposition. I swear, every time I hear William has been sick or has a lung infection, I panic. He is a bit young as this disease usually presents itself when one is around 50 years old but I still worry.

At the rehab class on Tuesday, Sherman was told that the founder of our rehab program was "on vacation" for six weeks. Sherman and I think something is up. She has been struggling with liver and lung cancer, has been doing well but we have a feeling she won't be returning. She already trained another person to take her classes but when the visionary is gone...look at Apple. We hope we are wrong. We hope she is traveling or cleaning her house or just resting.

I peeked ahead on my calendar looking for a day off. My schedule for the next week is as packed as this week. I need a break! The orchestra rehearsal was grueling last night. Sight reading pieces I had never played before really gave the old brain a workout. Even though I think this is my last concert with the orchestra, so I can focus on the Irish Fiddling group, it became clear last night that reading music was good for my brain and maybe I should re-think leaving. But, it was a late night for me and I am dragging this morning.

Crazy day ahead. I have to drop Michael off so he can take a friend's car to a mechanic at 8:30 this morning then I have an appointment to visit my glaucoma doctor before the rehab class. After class, I am meeting Michael then we are going food shopping together. I still will need to make some dinner. Long, busy day. I am so grateful that I am well enough to do it all!

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