The Prognosis #4

The Prognosis #4

On January 13, Elaine and I meet with Dr. Raghu at the UW Medical Center. Earlier in the day I had a high resolution CAT scan, pulmonary function testing, six minute walking tests where the technician monitors the oxygen saturation levels of my blood with and without oxygen supplementation and blood hemoglobin test. The news wasn’t good on any front or a surprise either for that matter.

The CAT scan showed progression of the disease. The pulmonary function testing showed that my lung function had dropped to ~30% of normal. The walking tests showed that while walking for six minutes without oxygen supplementation that the saturation level in my blood dropped to the high 70s or low 80s percent. (approaching the levels where you pass out) At rest it would hover in the low 90s percent. Normal is high 90s to 100% at rest and high 80s to low 90s percent under stress. Oxygen supplementation bumped the levels to safer range but still below normal.

All this suggested that everything went to “hell in a hand basket” as they say. Dr. Raghu stated the obvious. It was time to focus 100% of my time on my health. He told me that I was now qualified as 100% disabled, it was time to quit working, get into the UW transplant program and follow his instructions completely.

He promised that if I did what he told me, that my prognosis would improve. The survival rates of their transplantation program is greater than 80% after one year and greater than 50% after five. Last year they had 50 lung transplant patients with 60 lungs coming available. (some received one lung, other two) Because I am otherwise pretty healthy, I could expect to be in the high end of the survival numbers.

I was sent home with a ton of papers to read. He asked that I join a FDA sponsored study he was heading, (study to look at whether blood thinner Warfarin, had a positive effect on Idiopathic Pulmonary Fibrosis patients). The first step is to attend a 3 hours class on lung transplantation on January 20, (tomorrow).

I was sent home with hope that I can survive. I was also in shock that if I followed his instructions that I could not continue to work. Not working presents problems with insurance, income and all the other things we take for granted.

Ironically, my employer laid off 2/3 of their sales force, 717 people, on January 4, yours truly included. The severance includes keeping my insurance for 6 months at employee rates. After that, COBRA comes into play. The Catch-22 is how does one pay for COBRA when not working? That’s still unresolved.

So tomorrow’s class begins the official process of “applying” for the lung transplant program. Tons of tests will follow to identify whether I “qualify”. Ongoing blogs will document this process, the challenges I face on how to pay for this without a job, the application process for disability and supplemental social security insurance et. al. It’s going to be interesting and educational for sure. Wish me luck!

Bob