Living Well with a Bad Diagnosis - Lung Disease

Sunday, May 28, 2017

Questions and Traditions

During my niece's wedding last week, Michael was able to speak privately with my sister. Along with mom, we have been talking about changing our holiday traditions as it is becoming just too much for mom and me. We daydreamed about Thanksgiving take-out dinner from my organic market and enjoying Christmas lunch in a beautiful hotel dining room. No work. No two-hour each way traffic on snarled freeways. No hosting the event with days of preparation.

Earlier in the year, I had approached my niece to talk about this change of tradition. She totally understood and I asked if she could somehow mention how difficult it has become, especially for mom but for me, too. When Michael spoke to Lee last week, he talked about the traffic and the stress of the holidays and that now that Shelley was married, it was time for them to begin their new traditions. Lee replied that Shelley had mentioned this as well. Thank you, Shelley.

Michael offered that it might be nicer to spend non-holiday time together, to meet halfway when the freeways are not filled to the brim for a nice lunch some weekday during the spring or fall. I think the way he presented it, she understood. I hope. I feel a huge weight has been lifted from my shoulders.

In other news, I spoke with RN Christina at my rehab class on Thursday and told her the story about meeting the woman listed for lung transplants during my testing for the Lung Transplant Clinic a couple of weeks ago. It made no sense to me that her PFT numbers were so much better than mine - ever - and that she was already on the waiting list for her new lungs. How was that possible?

Christina told me that qualifying for lung transplants are not totally about hitting certain PFT numbers (which I did think) but it is also the level of the person's activities of daily living. Are they functioning? Can they take a shower? Can they pay their bills? Can they food shop? No matter the numbers, if the person is needing 10 liters of oxygen to sit on a couch, that is not living.

So, why were our numbers and activities of daily living so different? Christina grinned and said that it was my years of exercise. I have the muscles to sustain my activities of daily living. She then mentioned that even with the recent wicked knee injury, I was still at the rehab class and working out. That was what made the difference between the other woman and me.

That made sense. It also made sense when I think back to when the clinic's doctor said that I had been living with the horrible PFT numbers for years and asked what it would take for me to pull the trigger for transplants. I thought my numbers were still too high.

What I now realize is that when it really is the time, I will know it. It will be when I cannot function how I want to function. When it is so bad that I would be willing to take the chance of dying on the table than to live anymore at that level.

Somehow, the conversation with Christina settled it all in my mind and body. Pulmonary rehab is so much more than just exercising!

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