Seventh Anniversary of My Double Lung Transplant

June 15, 2011 was my seventh year anniversary of my double lung transplant received at Barnes Jewish Hospital in St. Louis. I credit my generally good health to the following:

 

  1. My relationship with God and his healing and sustaining hand.
  2. My wife, family, and friends for their prayers and support.
  3. Excellent medical care from those at Barnes Jewish and in Joplin.
  4. Faithfulness in taking my prescribed medications and in regular exercise in pulmonary rehab.
  5. Keeping active in writing and teaching opportunities and in family and church activities.

 

For those considering having a transplant I can testify my transplant has been a great blessing to me. It is a very serious and important decision. I resisted the idea at first but I am glad I decided to receive a transplant. I am grateful for these extra seven years especially with my family and additional opportunities to serve others.

 

I had Idiopathic Pulmonary Fibrosis. This disease progressively scars the lungs rendering the person unable to breathe. At present there is no known cause and no cure. Annually 40,000 die of this disease—the same number as die of breast cancer. I am so blessed to have received a transplant and no longer have the disease.

 

September 18-25, 2011 was National Pulmonary Awareness Week. The Coalition for Pulmonary Fibrosis provides education and promotes research on this disease. The Pulmonary Fibrosis Research Enhancement Act (H.R. 2505 and S. 1350) has been introduced in congress to increase funding for a national patient registry and for additional education and research on this deadly disease. If this bill would be enacted it would accelerate efforts in finding an effective treatment for pulmonary fibrosis.

The Value of Regular Exercise

I do not write to lay a guilt trip on anyone, but I warn you this is a commercial. I speak not as a paid salesman but as a satisfied customer. My testimony is that regular exercise has paid significant benefits in my life.

This August 12, 2010, marks ten years of exercising three times a week at Pulmonary Rehabilitation at St. John’s Regional Medical Center. Because it is a priority to me I seldom miss. This exercise program has made a vital contribution in extending and enriching my life.

In 2000 doctors diagnosed me with idiopathic pulmonary fibrosis, a terminal lung disease. Regular exercise contributed to my being able to live long enough to receive a double lung transplant in 2004. My doctors told me that good muscle tone in my body would make the transplant more successful and enable my body to more efficiently utilize the oxygen it receives. Not only did exercise help me live long enough to receive new lungs, it has contributed to my generally strong health these past six years.

Medicine can only do so much. Exercise is something we can do for ourselves. Barbara, my wife, had breast cancer five years ago. She underwent surgery and chemo therapy. She has chosen to work on eating healthy and walking regularly as her approach to try to prevent reoccurrence. She walks two miles four or five times a week. I did not walk as a part of my regular exercise routine taking about an hour. But Barbara convinced me to add thirty minutes of walking and do it on the days I didn’t go to rehab.

The benefits of exercise to physical health does not tell the whole story. Barbara and I thank God that we have been able to continue to have a part in our children and grandchildren’s lives. Though retired we are happy to be serving God and others.

I Am Thankful for My Double Lung Transplant

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. Continue reading

National Pulmonary Fibrosis Awareness Week

Screen shot 2009-09-27 at 1.34.48 AMI 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.