Hope

Michael is so much better this morning and is even going to work. Me? I didn't sleep well last night and will drag through a very busy day. The long drive into the city to meet with the nutritionist will be the first order of business. I am not feeling very confident to face the scale today. Since being on antibiotics, I have not been allowed to exercise. Hate that. After driving back down to the coast, I am seeing the dentist for a cleaning this afternoon. Dinner tonight is simple fish and veggies then orchestra rehearsal.

It is going to be a long day.

There is a bit of heaviness in my heart. At the first ILD Support Group meeting many years ago, I met the first person who also had Hypersensitivity Pneumonitis. Marty and I clung to each other, shared medication history and how we were diagnosed. We supported each other. We always shared our personal health with updates.

Over a year ago, he crashed. It happened after he flew to Hawaii. Suddenly, he needed supplemental oxygen 24/7 and he hated being tethered. I always assumed we were about the same age and I was shocked to learn that he was 70-years old. In good shape, he was approved for a single lung transplant at my mom's university hospital. The surgery went well. There were minor complications. He went home.

A few days ago, I sent an email to see how he was doing. The news was not good:
during June/July I experienced a decline--primarily short breath--and was admitted to **** Hospital three times, the last one entailing a major infusion of a superdrug (ATG) when, after three weeks of pricking and prodding, they couldn't figure out what else to do . . . apparently, it was less than helpful (incl commission of errors) and since discharge I'm on three litres of O2 (24/7) and VERY short of breath, especially on exertion . . . using a wheel-chair to get to my medical appointments-- with no change in sight . . . my mood is good

Just breaks my heart. He pursued the transplant because he wanted a better quality of life, including not having to deal with supplemental oxygen. It really was the primary reason he wanted a transplant. And now, he is worse than when he was transplanted. A wheelchair!

I am beginning to really understand what the doctors have told us in the support group: each transplant is different. There are no guarantees. Each lung, each body, each history is different. Transplants are not a cure, they are a treatment.

The closer I am racing towards them, the understanding of this becomes clearer. It is not a slam dunk. If you qualify then find lungs then survive the surgery, it is a challenge to maintain them. There is no skipping happily into the future. It could all go very badly very quickly.

The only thing we all really have is hope. Hope that we are healthy enough to receive the lungs, hope that we live a better quality of life because of the transplants, hope that we live to see our children grow up, hope we see the next generation. There really is nothing else to cling to but the hope that it all works out well. All good reasons to keep moving forward, taking care of ourselves and pursuing transplants.