It started with a persistent cough in 2017 that I just could not shake.
Trips to the ER would result in a diagnosis of bronchitis, a prescription of antibiotics, and an inhaler yet the cough would persist. After months, a chest X-ray was ordered which revealed scarring of the lungs and led to a series of events that led to a referral to a pulmonologist, my first pulmonary function test of many, and a CT scan. It revealed that I had pulmonary fibrosis, growths in my lungs that reduce both the capacity to breathe and the ability to extract oxygen from the air. After a referral to Stanford Medical Center, we soon learned that I suffer from a rare autoimmune illness called Dermatomyositis, which in a small number of cases has lung involvement. It also affects the muscles and the skin, causing me to be weak, fatigued, and have chronic pain, along with the occasional rash.
Updates (8)
February 26, 2022
Here we go again. I got the call again to head to Stanford where a set of lungs are waiting for me. If all goes well I should head into surgery late morning or early afternoon Saturday.
I am nervous and anxious after the last time which I am still recovering from having been home only a few days.
May the Force and my gods be with me.
February 24, 2022
I am home after 16 days of recovery from the surgery where I was prepared for transplant before the clot was found in the donor lung at Stanford Medical Center. It was the most difficult thing I have done in my life. But now I know what to expect when I get my transplant, and the recovery should go better with healthy lungs than with my ill lungs. I consider it training, and now I know I have the strength to see this journey through completion and more prepared than most lung transplant patients for the recovery process as I have been through it once already albeit without new lungs.
The staff and care at Stanford were exemplarary and I always felt well cared for in the hospital.
Photo Galleries (1)
Guestbook
March 25, 2022
Go Sir Zen!
Jacqueline Jacobson
March 2, 2022
I don't know you, but I liked your book very much and I hope everything goes well for you.
Kelly Brown
February 18, 2022
Looking forward to your first easy breath, dear Zen!
Jenine Abarbanel
