Living Well with a Bad Diagnosis - Lung Disease

Monday, October 17, 2016

Ready for the Week

My weekend plan was perfect. I took care of myself, stayed in while it rained outside and rested. Boring yes, but I think I dodged a bullet because I was really not feeling well on Saturday. I have another crazy week ahead, in fact, I could be out every night this week and have packed days.

Saturday afternoon, I had an hour phone conversation with the uncle of an RN from the other rehab. He was told he had an ILD but nothing had happened in six years. No diagnosis, no workup for GERD, no mention of pulmonary rehab. Nothing. He also didn't want to deal with it and was just now beginning to feel shortness of breath.

He wasted years that he can't get back. I suggested several things: He needs a proper diagnosis, he needs to be seen in a research/university facility, he needs to begin pulmonary rehab ASAP, he needs to consider the new anti-fibrotic drugs if he has IPF. He got it. His niece will check in with him at the end of the week and was thrilled that I was able to move him forward.

I felt pretty good after our conversation and hoped I really helped him with information from my ILD Support Group and my personal experiences. Made my weekend.

Tonight, Michael and I are hosting British Don at one of the best restaurants in the city for his birthday. It's deep in the city. We will be dealing with rush hour traffic and the stress of getting there on time. A late night.

Tuesday, I have an Irish Fiddling rehearsal, Wednesday is an orchestra rehearsal, Thursday is the Summer Strings rehearsal and Friday. Well...

Every summer, mom and I would meet Barbara's Day Care kids at a ranch owned by a large university. We loved watching the kids catch and hold chickens, brush the goats, feed the sheep, avoid the llama (he spits), pet the rabbits, card wool and just hang out. A wonderful place for kids. The head of the ranch is retiring Friday and they have asked my Irish Fiddling group to play in the large barn (with the sheep) for the party of 25 people. Fun. A pleasure.

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