Living Well with a Bad Diagnosis - Lung Disease

Saturday, May 13, 2017

Two Women Connecting Over Our ILDs

While I was waiting to being walked back to the pulmonary testing lab Thursday, a mother and her daughter also checked in. We began to chat. They had driven three hours for their appointment and were going to be on the campus until mid-afternoon so they faced horrible traffic returning home. Mom was on supplemental oxygen. The daughter was lovely and dealt with the office staff while mom and I chatted. I thought she spoke English really well but she apologized for it. When the daughter joined us, she would speak in Spanish to her then her daughter would translate. Mom had questions so we really had a nice chat and enjoyed each other's company.

After the PFT testing, I continued to the CT Scan offices and bumped into them arriving when I was leaving. We all greeted each other again. Up in the Lung Transplant Clinic, I checked in but had to wait a bit. A nice gentleman began a conversation with me and I learned that he was 58 days post transplant. He only spent 10 days in the hospital and the only complaint was some nerve pain at the surgery site. Not too bad at all. He took off after dealing with his business and suddenly, there were the mom and daughter checking in. We waved at each other then they joined me.

At that point I learned that the mom has been on the waiting list for transplants since October and was currently listed in the low 30s (I don't want to share the exact number). She told me that one of the reasons that it has been a problem matching her with a donor was that she had a blood transfusion years ago. Yikes! I had one, too, when William was born. Again, it has to do with the antibodies. Later, I began to wonder if she also had a rare blood type.

Mom asked me why I was not on oxygen. I explained that I had done so much exercise that my muscles were able to support my lower saturation levels. She was amazed.

Then it happened.

I told her that I had an ILD and showed her my PFT report. Again, it was horrible. She pulled hers out of her purse and gave it to me. She also had an ILD and I can't remember the exact numbers but I was shocked. Here was a woman listed for transplants and I would kill for her numbers. Lung capacity was in the 60s and her DLCO was like 40 something. A reminder: my numbers were 43 and 10.46.

She looked at me in shock. She got it. I looked at her and shrugged my shoulders. I really didn't and still don't understand. Maybe she has been dealing with being really ill for a long time and was more housebound. Maybe her quality of life was so impacted that they approved her for transplants. Who knows? I am still rather shocked at her numbers but I also remember what the doctor asked me, "What would it take for you to go forward with transplants?" Thinking of all that I have been through, especially the past two years, I think I have maybe a higher level of what I am willing to adjust to before taking such a drastic step.

Gives me food for thought.

No comments: