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.
On my first visit to see my Stanford Pulmonologist, Dr. Raj in 2018, he brought up the possibility of a lung transplant, and it looks like that time has finally come. In May of 2021, I was evaluated over four days at Stanford Hospital being subjected to every test I have ever heard of, and quite a few that I had not. It was determined at that time that we were a little early for transplant and I would be monitored closely to determine when I would be in the transplant window where I am sick enough to need the transplant, but well enough to survive the surgery… and the wait.
January 10, 2022
I am officially on the Lung Transplant List with a score of 35.8657 which I am told is a pretty good score in the transplant window to begin. The higher the score, the higher the priority with scores of about 54 and higher being the top 10% of the list and scores in the 50s needing or being near to needing hospitalization.
My score will increase along with my oxygen needs and as my walk test distances decrease.
The wait really can be short or long as my blood type of B+ is rare. It can be long as B+ donors do not come up very often, but it can also be short as there are not many B+ lung donation candidates in the state so any B+ lung that becomes available in the State even outside our area I have a good chance of being matched with.
Thank you for your prayers, spells, energy, and work on my behalf as they have sustained me on this difficult #TransplantJourney but do not let up now. But today I received the news that I have the chance to survive a terminal disease.
December 28, 2021
I just got the call from Stanford.
They are going to list me for Lung Transplant!
There are just three things that need to happen:
1) I need a new echocardiogram
2) they need to find my results from my 24 hour urine study back in May
3) Insurance Authorization
After that, I will be given a score according to my medical need. When a lung becomes available if it is not compatible with anyone with a higher score than me, and is compatible with me (mostly based on blood type & chest cavity size) I will get the call and need to make my way to the hospital within 4 hours.
Once on the list the wait can be a day, or it can be a year. The average wait is six months.
Photo Galleries (1)
January 3, 2022
We love you, Big Guy.
January 1, 2022
May you breathe freely - An Mórrígna and Dagda and Brigit go with you xx
December 31, 2021
Sending thoughts and energy for your health.
December 31, 2021
May The Morrígan and the Force be with you! Much love and support from Einmariya~ <3