Before that happened this morning, I did have my pulmonary function tests and a 6-minute walk test yesterday. I was rather surprised at the results:
- SPIROMETRY: Forced Vital Capacity- 1.34 or 45% of expected
- DIFFUSION: Diffusing Capacity with the hemoglobin excluded - 8.88 or 37% of expected
So, my lung capacity is about 45% and that 8.88 diffusion number is the lowest I have had since the very beginning of the disease in 2004. It explains so much. After a long day, I will sit down and totally fall asleep on the couch beginning around 5:30 or I will fight to stay awake until 7PM. I just don't have the quick flow of fresh oxygen going through my body anymore.
Today, I met with one of the transplant doctors. I was practicing how I was going to tell him that I wanted to move forward towards transplants and wanted to be listed. Nervous but feeling prepared, he walked in, recognized me, I reintroduced him to Michael and he asked, "What can I do for you today."
My quiet, soft-spoken Michael spoke up from the back of the room to say, "We are here for new lungs. We are ready."
Didn't need all my practicing!
This doctor totally got me and who I am. He did mention that something they refer to as "grit" counts and really can't be quantified but is so important as a transplant recipient. They want people with grit, not passive or people who are totally fearful. They just don't do as well. He told me I had a ton of grit. Loved that.
Through the conversation, I mentioned that I wanted two lungs. He said yes. He said he had never seen anyone with my 15-year history of pulmonary rehab and so fit. Apparently, that is very rare.
The problem: My numbers meet the minimum to qualify for transplants but barely. I do look too good but I did tell him that I really cannot do everything that I have been doing up to a year ago. It has been a difficult year, health-wise. I am done. My body is beginning to break down. It is time.
He recommended that I meet with the surgeons then he will take my case to the entire transplant group who will decide if I will be listed and what number.
I learned that my blood Type A only has 15 people currently waiting on the list. Compare that to the 60 people with type O and clearly I am in a smaller waiting room. The other good news was even after having a baby and blood transfusions, I have no antibodies that have to match. That alone will make is easier to match a donor.
To add drama to all of this, mom's assisted living owner phoned while we were waiting to see the doctor. Mom was having a reaction to medications again and was in delirium. Again. So, after our visit with the transplant doctor, we rushed down to see her. She was fine and denying any problem. According to the owner, she was hallucination again and we think it was caused by a new drug she began on Tuesday. I am waiting for a call from her cardiologist for help and advice.
AND British Don's plane just landed and is meeting Michael at Blue Bottle Coffee before they make their way here for homemade appetizers, dinner and dessert. He will be with us until Saturday morning. Did I mention I had to change my hair appointment because of mom so I will be in the chair at 7PM probably snoring as she colors and cuts my hair!
No comments:
Post a Comment