Three years ago at Rollercon I found I couldn’t walk to and from the exhibit area without having to stop to rest. I just attributed it to getting old.
When I returned home, it was time for my annual physical checkup, and after running the usual tests Dr. Mishra suggested I see a pulmonologist, and he set up an appointment with Dr. Massoumi. After a thorough examination it was determined I had pulmonary fibrosis; I was shocked, I have never smoked in my life, and allergy tests could find no really source, so I have ideapathic (meaning they don’t know why) pulmonary fibrosis. My immune system thinks my lungs are being attacked, so it is shutting down the openings that let the good stuff in and the bad stuff out. My lungs are operating at far less than they should….a thorough examination at UCSF Medical Center in San Francisco confirmed the diagnosis.
There is no cure for the disease. I am on oxygen 24/7 and the amount I need is increasing; luckily there are portable units so deliver it. I have been taking a “miracle” drug Ofav, which while it doesn’t cure, it is supposed to slow the disease. I take two pills a day, at the cost of $157 each (or about $9500 a month) which luckily is covered by Medicare and a grant.
At my last visit to Dr Massoumi a few weeks ago my weight was down to about 145 pounds, reflecting a loss of about 50 plus pounds…..I have to force myself to eat. Tests results reflected what was happening, and I asked if I should assume I am in my last year. He said that probably would be a good idea.
With the help of my family and others, I have been getting all in order.
I am not changing my behavior at all. I won’t dwell on this and have no fear of death. I will continue to try and help others as well as remain my usual personna on social media. I love all my friends and will try to keep it interesting for you, but my main objective as always is to reflect my personal feelings at the particular moment I am writing.
I am in no pain and just have to be aware of the low oxygen level of my blood, and how to keep it raised. Eventually the complete oxygen starvation will occur. Lungs transplant are out of the question, and there is no stem cell treatment.
I have had a great and interesting life (check out posts on rollerderbyjesus.com, see promoting always), and love my family, children and grandchildren, and the others who have brought me to this point.
Do not feel sorry. Please do not avoid me; that would be terrible. But don’t expect me to be anyone different.
Just thought you would like to know the facts.