Writer and Teacher
Posts tagged Pulmonary Fibrosis
Celebration of Life
Apr 21st
A Celebration of Life service was held April 20, 2010, at St. Johns Hospital in Joplin, Missouri to honor donor families, recipients and those waiting for the gift of life. Midwest Transplant Network and Heartland Lions Eye Banks sponsored the event. To inform the community about the importance of organ and tissue donation a front page article in the Joplin Globe (April 18, 2010) told the story of Lynn Gardner, double lung recipient. The article can be found at the following link:
http://www.joplinglobe.com/local/x1687715437/Lung-transplant-gives-local-man-new-lease-on-life. You can also Google Joplin Globe and go to Local News.
Representing organ and tissue recipients, Lynn Gardner gave these comments to those present for the April 20th service.
Does an organ donation make a difference? I can say it certainly has in my life. In July 2000 at the National Jewish Research Center in Denver I was diagnosed with Idiopathic Pulmonary Fibrosis, a terminal lung disease. Idiopathic means the cause is unknown. Pulmonary relates to the lungs. Fibrosis means scarring. At that point my life expectancy was only three years. On June 15, 2004, I received a double lung transplant at Barnes Jewish Hospital in St. Louis. Today I am doing well and plan to return to Barnes in June for my six-year check-up.
Between 130,000 to 200,000 Americans suffer from Pulmonary Fibrosis which is a scarring of the lungs leaving the victim unable to breathe. Each year at least 40,000 die of this disease, the same number as die of breast cancer. The Coalition for Pulmonary Fibrosis said of those proven by biopsy to have the disease only .8 of one percent receive a lung transplant and survive the disease. We do not know the cause of the disease and no cure has been found apart from a transplant. I stand here tonight before you as one greatly blessed to have received new lungs.
If I had not received my lung transplant, these things would be true:
- I’m sure I would have died in 2004 and my obituary written and my funeral a matter of history.
- My marriage with Barbara would have ended at 43 years. I would not have been alive to help my wife deal with her breast cancer in 2005. We would not be anticipating our 50th wedding anniversary in February, 2011.
- My grandchildren would have been only seven and three years old and I would have missed out on all the great times we have had together in the last six years, especially our Bible club.
- My ministry through teaching and writing would have ended, without these last six years of teaching in Sunday school, care groups, and in our Bible club, various opportunities for speaking, and writing articles and books. More >
I Am Thankful for My Double Lung Transplant
Nov 28th
In July 2000 at University Hospital in Denver I had a lung biopsy. Immediately after the surgery the surgeon said my wife, Barbara, “Have you considered a lung transplant?” We had not given one thought to a transplant.
I began having a non-productive cough in 1995. In the fall of 1999 I was checked out for shortness of breath with asthma, apnea and other things ruled out. My local pulmonologist suspected idiopathic pulmonary fibrosis which a CT scan at Barnes Hospital (St. Louis) confirmed. However, my doctor wasn’t sure what treatment to pursue.
I went to National Jewish Research Center, a top respiratory hospital in Denver. They agreed with the diagnosis of Idiopathic Pulmonary Fibrosis. Idiopathic means the cause is unknown. Pulmonary refers to the lungs. Fibrosis means scarring. IPF, as it is called, is a progressive scarring and deterioration of the lungs leaving the victim unable to breathe. My doctor said, “You don’t have cancer, but you have something just as bad. You have a life expectancy of about three years.”
More than 128,000 Americans suffer from this disease with about 48,000 diagnosed annually. Each year 40,000 die of IPF, the same number as die of breast cancer. Despite these facts, little is known about IPF. It has no known cause or means of prevention or FDA-approved treatment—outside of a lung transplant. More >
National Pulmonary Fibrosis Awareness Week
Sep 14th
I want to call attention to this week because I had idiopathic pulmonary fibrosis, a generally fatal disease. June 15, 2004 I received a double lung transplant that saved my life.
“Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring known as fibrosis — and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).”
September 14-21 is designated as National Pulmonary Fibrosis Week by the Coalition for Pulmonary Fibrosis, a national advocacy seeking to accelerate research efforts to find a cure for pulmonary fibrosis. They are promoting the passage of the Pulmonary Fibrosis Research Enhancement Act (PFREA H. R. 1079) that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.
“The urgency of the campaign is that the disparity of federal investment in PF compared to other diseases that realize far fewer deaths and have longer life expectancies, means a far longer wait for a possible cure. The wait for funding is costing 40,000 lives each year, the same number of lives lost to breast cancer,” said CPF Chief Executive Officer.
Any efforts to encourage members on Capitol Hill to pass this legislation would be appreciated. For more information see http://www.coalitionforpf.org/ or call 888-222-8541.
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