WHAT?!?! NO TRANSPLANTS?!?!?

Well, hello! I have more news. Last week, Michael and I went to our meeting with Dr. S. at the Lung Transplant Clinic. He recognized me and we had a lot of fun with him. He was the father of a toddler and a 7-month old so not much sleep was happening at his house right now. From a teacher's viewpoint, I told him lots of good stuff coming up and we had a good laugh.

He asked if I would agree to lung transplants if approved today?

Yes.

He took a deep breath before asking about my quality of life. What I could and couldn't do. Example: I edged the shrubs along our driveway and parking slab, which would normally take me 20-minutes but it had taken 90-minutes. He laughed. "But, you still are able to do the work?" Me, "Of course!" He shook his head. After a few more question, he said that:

THE GOAL OF LUNG TRANSPLANTS IS TO GIVE A PERSON A BETTER QUALITY OF LIFE.

He said that if I had the transplants now, I would not have as good quality of life. Though my numbers are bad enough to qualify, all of my exercise, including pulmonary rehab six-days a week since 2005, has given me the muscles to support my lungs and I am TOO HEALTHY to qualify for lungs.

He also said that a person my age usually has issues following the transplants. Strokes. Still needing supplemental oxygen. Bedridden. The average life post-transplants is only 3.5 years. (I immediately wanted to ask questions about how healthy these people were going into the transplants or how many years they worked out in pulmonary rehab but I sat and listened.)

We then shared with him our secret goal - Dr. K., Michael and me - is to age out of the program at 70-years old. That, my friends, is only 4 short years away. If I can stay healthy enough, age out and stay alive for a few more years, I will have the same life expectancy as if I had the transplants.

He said that was a good plan as he noticed that every time I had a downturn, I improved. I shared that my secret weapon was exercise and that whenever I was feeling bad, I would kick up my level of working out. He shook his head. Wow.

So, he said we will put a hold on all testing and other plans, have another set of pulmonary function tests in three months then see where we are. I smiled at him. Three months. Let's see what I can do in three months.

I walked along the beach for twenty-minutes two days last week and will kick it up to thirty minutes this week. Eventually, I will work up to fifty-minutes two days a week on top of my two day of pulmonary rehab. I still do a bit of yard work on the weekends so I may add some chores to my routine.

It was remarkable how much better I felt after just the first walk. Somehow I felt I could breathe easier, fuller, walk straighter, stand taller and just had more energy overall.

I've got three months to see if I can improve my pulmonary function test numbers.

NEW LUNGS A'COMIN'

Well, hello Dear Readers! So much has happened since meeting with Dr. K. in January. On March 20, I finally had the Pulmonary Function Tests to determine the damage. I was feeling pretty good. After the tests, I always ask for a copy of the results.

I know my numbers. I follow my numbers. Taking one look at them, I knew they were very, very bad. Horrible.

DLCO Diffusing with hemoglobin - 10.52 or 44% of predicted
Forced Vital Capacity 1.25 or 41% of predicted

Others:
Alveolar Volume - 1.91 or 39% of predicted
Forced Expiratory Vol 0.84 or 36% of predicted
Forced Expiratory Flow 25-75% was 0.46 or 22% of predicted
Forced Expiratory Flow 50% was 0.61 or 18% or predicted
Forced Expiratory Flow 75% was 0.26 or 22% of predicted

Pretty darn low.

Dr. K. and I agreed we had a good run but it was over. We had both hoped that I could have continued on and aged out of the transplant process. The numbers also indicated that I needed supplemental oxygen 24/7 now (a pain in the butt). The up side is that I must have really needed it as I feel so much better, have energy and no longer feel the tightness in my chest.

She wants me to be listed for lung transplants as soon as possible. The process begins March 18 after I do the test to prove I need oxygen 24/7 for Medicare. That will be fun! 

In order to be listed, they examine EVERY ORGAN to insure one has no hidden medical issues. As 90% of my doctors and tests are at the facility it will be easy to have these other doctors’ sign off for transplants. But, any other testing takes time. Once that is done and after a financial review and an interview with a social worker (money, insurance and a two helpers must be interviewed and in place), they determine a number then submit my data to the State who applies their number. 

Once I am listed, I will not be allowed to travel more than an hour from the hospital. If I don’t get worse by then, the first listed number will probably be high. Not an emergency. Everything will be in place for the next downturn when my number will zoom to the top of the list. But, I am learning that this might have changed. One had to be six-months to death for transplants but I am hearing that has evolved. Maybe I am low enough...this is one question I will have for the lung transplant doctor when I meet with him on the 18th.

The surgery is done late at night. No one but the surgery team is there. Afterward, I will be kept under for 24 hours to adjust the medications without the complications of food. 

Then, the fun begins. The average stay is eleven days but for the first month, we will have to drive into the city five days a week for blood tests and a doctor appointment to adjust the medication levels. I will be unable to drive for six weeks and will sit in the back seat. 

To maintain these new lungs are a lot of work. Only 50% of lung transplant patients are alive after five years. This is not a slam-dunk. It is not a cure but a treatment. But, I am grateful for all the recent changes to the procedure including: no more breaking ribs and no three months in the hospital. 

I will post an update after meeting with the Lung Transplant Clinic doctors on the 18th.