Writer and Teacher
Posts tagged Health
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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