Living Well with a Bad Diagnosis - Lung Disease

Saturday, July 1, 2017

Waiting for a Donor

It was, after all, a frantic week. Each day was a push. Each day ended with unfinished business. Each day felt like a marathon. When I walked into the house on Friday late afternoon, I began to relax. The goal this weekend is to try to do some paperwork, connect with my niece, connect with Christien, connect with my brother, pull some weeds in the garden and poison the rest of them. A nap is listed on my "things to do."

Groceries are in the house and we are ready for the holiday. But, Monday is going to be another grind. More doctors for mom, her sunglasses are ready for pickup from Costco and she needs to FAX her will and trust to a new attorney so she can produce changes to mom's will. But, I'm not going to think about that all weekend.

I am going to think about the possibility of some sunshine - doubtful - and some reading out on the swing and listening to the birds sing.

Sunday morning, I have a special date to chat with a woman on the phone. She has my disease and was also a teacher. She is a friend of Bob in my rehab class, who is currently listed and is waiting to get a set of new lungs. I really like him. She is newly diagnosed and is being seen at my university hospital. I will encourage her to join the ILD Support Group, be tested for GERD and sleep apnea, ask about pulmonary rehab class, talk about supplemental oxygen, travel safely and just share information. I always say that I am just further down the road of having an ILD with lots of experiences along the way that I am willing to share. I hope I am able to help her.

Bob and I were talking about how mentally strange it was to pray for new lungs when, in your brain, you realize that you are praying for someone to die. I told him a story about a man I met in the ILD Support Group who told me that when he got listed, he bought and lit a candle to give thanks to the person who was going to give him the gift of lungs. He said he believed that we all have paths and lessons to learn in our lives - like being ill with an ILD - and that this gift of lungs was part of his donor's life path. Bob thanked me. It had been bothering him and this made him feel a bit better.

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