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Oct 16, 2014
Welcome to our CaringBridge website. We've created it to keep friends and family updated about our journey towards a much needed lung transplant for TJ. She was diagnosed with idiopathic pulmonary fibrosis(IPF) in January of 2006. The diagnosis was later changed to Familial Pulmonary Fibrosis due to the fact that both my brother, Gary, and paternal grandfather had Pulmonary Fibrosis, a deadly disease that is only "cured" by a lung transplant. Only 5-10% of people diagnosed with pulmonary fibrosis have 2 or more family members diagnosed with this deadly disease. An additional diagnosis was added to TJ's when she became a transplant candidate at the University of California at San Francisco (UCSF) in October of 2013. The UCSF team from the Interstitial Lung Disease Center also added the same diagnosis to Gary's in September of 2014 when his lung biopsy slides were delivered. The clinical information about TJ's familial pattern is being used in a new study of familial pulmonary fibrosis that includes researches from the University of Texas and UCSF. We all hope it's going to cast a new understanding of the disease process and help to find a cure for this debilitating and deadly disease.
TJ received a bilateral lung transplant on July 9th, 2014 at UCSF and is so excited and humbled about the possibilities for her life this organ donor and their family have made possible.
Get started by reading the introduction to our website, My Story.
Please feel free to visit often to read the latest journal entries, visit the photo gallery, and write Les and I a note in our guestbook. We love hearing from you!
I was given the green light at the University of Washington Lung Transplant Clinic yesterday(Dec 23, 2011) to go through evaluations in preparation for a lung transplant. The disease I live with and my brother, Gary, died from five years ago, is Idiopathic Pulmonary Fibrosis (IPF). ) Gary and I happen to have manifested the familial, or genetic, form of the disease in our 50's. (My grandfather, who fought in WWI, also had pulmonary fibrosis.)
"Idiopathic" means no one is sure what causes it. Over 40,000 people die a year from pulmonary fibrosis that basically suffocates a person as the lungs stiffen and are unable to process oxygen. A lung transplant is the only treatment for this disease right now. There are no FDA approved drugs to treat it, although the future looks promising in 10 to 20 years.
I have been very fortunate to have survived 6 years post diagnosis. Many people do not. Within the last six months I have experienced a more rapid deterioration of my lung function and it is time to go through the evaluations to see if I qualify for a transplant. The pulmonolgist, Dr. Jeffrey Edelman, at the U of W believes I will. Other than this lung disease, I am basically a very healthy person.
The lung transplant is no walk in the park as you may imagine. The lung is the only organ that is constantly exposed to the air and possible contaminants that can cause infection or rejection. There is about an 85% chance of surviving the first year of a lung transplant. By year five, there is a 50% chance of survival. One is basically trading one condition for another. Sadly, my brother only survived his lung transplant for 16 months.
It is better for me to attempt the transplant, although I know many wonderful people with pulmonary fibrosis who have decided they wouldn't want to have a transplant or do not qualify due to age or physical condition. It comes down to being a very personal choice with no choice being more noble than the other. There are no guarantees on the outcome or whether one will actually receive a lung. Rejection is a constant concern as are other lung conditions that can develop in the donor lung which would make continuing to live very difficult.
Then again, there are no guarantees in this beautiful life. Everyday is grace and a blessing. There are many challenges ahead accompanied, I'm sure, by many gifts no matter the outcome.