Living Well with a Bad Diagnosis - Lung Disease

Friday, May 12, 2017

Pre-Testing for Lung Transplants

I had to be out of the house by 6:30AM yesterday so I missed writing the blog. The Lung Transplant Clinic had set up an 8:30AM appointment with the pulmonary function lab followed by a CT Scan then a meeting with a doctor I had not yet met who is part of the transplant team. A long day. A long day with a lot of walking, or limping, on my not-so-good knee.

It was an easy drive into the city that early and I found a close parking spot, though still a long walk through the garage to the elevators, a stroll across the street then into the hospital and up 13 floors. I am on Facebook with Andrea at the front desk, it was the first time I had seen her since having a baby so I brought along a little something. Baby cowboy boots and a little outfit. She loved it!

I met with a new tech who treated me like it was my first rodeo. Kind of irritating. I kept asking what my specific numbers were compared to six months ago. She replied that they were about the same but she wouldn't give me the numbers. I know my numbers and I track them! Irritating.

After having my blood taken for hemoglobin levels for adjustment to the DCLO, I got the report to take to the doctor in the Lung Transplant Clinic. I waited to review the numbers until I got to the CT Scan offices. (It was hard to find, I get lost every time so I walked so far that I began to worry about my knee.) I flipped out when I read the PFT numbers. Six months ago my Spirometry was 49% and it was 43%. That was a huge slide. My Diffusion rate was 12 and now it was 10.46. I have not had numbers that low since 2004.

After the CT Scan, I headed to the doctor's appointment in the clinic. Dr. S. was marvelous, I had seen him at the luncheons but we had never met before. He listened to my lungs then I shared my concern about the PFT numbers. We talked about the recent eight-weeks of the virus followed by the past two weeks of no exercise due to my knee. We talked about having a new tech give me the PFT, which can really make a difference. He then pulled up the recent CT Scan along side the Scan of 6-months ago and said he saw no changes that would prove the dramatic drop. He thinks the low PFT numbers were an anomaly.

The plan moving forward: I am going to have another set of PFTs in three months. If I feel worse or more short of breath sooner than that next appointment, I am to arrange a PFT through Dr. K.

One question he asked, which you might want to ask yourself was, "What would make you decide to go ahead with a transplant? How ill would you have to be?" My answer? If I had to rely on someone to get through the day. If I could not function out in the world. If I was housebound. If I couldn't do what I needed or wanted to do. I have a quality of life issue. If it was horrible, I would rather take the chance of dying on the table during a transplant than living on a couch on 10 liters of oxygen. We may see my actual tipping point, when that time comes.

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