Double Lung Transplant–Ten Years and Counting

 

Father’s Day, June 15, 2014, started as a usual Sunday. I ate breakfast, did some last minute study on my Sunday School lesson, got dressed and went to church. After church, Barbara said we would get together with family later, so we ate barbeque sandwiches at our usual restaurant. We came home, and I watched the St. Louis Cardinals. I asked Barbara if I should stay in my good clothes, and she said, “Yes.”
She came dashing into the family room at 3:05 pm and declared, “We have to leave, right now! We were to meet the Arnces at three.” Perplexed, but obedient, I went along as she drove us to the church house. I noticed several cars in the parking lot. We entered the church fellowship hall. A crowd of people wished me congratulations on the ten year anniversary of my double lung transplant!

Yes, I was surprised and overwhelmed. With long-distance discussions with our son and wife, Barbara with our daughter and husband and daughter-in-law and their families had masterminded this surprise party without my knowledge or even suspicion. (Barbara found it exhausting to give me vague answers all the time and decided she is not cut out to be a secret agent.) It was a special day and a wonderful celebration for me. Everyone from our care group and our Sunday School class joined our family and a few other friends–a valuable support group of forty.

Barbara planned the celebration. Our daughter’s family provided the refreshments and decorations and our daughter-in-law made the cake. The cake had a picture of lungs with the heading “Breathing Easier for Ten Years” with the words, “The LORD has done great things for us; we are glad” (Psalm 126:3).

The day marked a significant milestone. We did not know if I would survive long enough to get the transplant. After the transplant, doctors told me that the average time of survival for persons with lung transplants was five years. Here I am, doing relatively well, at ten years and counting (June 15, 2004-June 15, 2014). What a privilege to have these ten years with my wife and family and friends. This extension of life has enabled me to continue my writing and teaching ministry.

I am blessed. I give thanks to God and the Lord Jesus Christ. I am deeply grateful to my wife and family, friends, and the medical persons who have served and supported me.

 

A Tribute to Barnes Jewish Hospital’s Lung Transplant Program

St.Louis photo

As I approach June 15, 2012, the eighth year anniversary of my double lung transplant, I want to express my appreciation to the staff at the Lung Transplant Program at Barnes Jewish Hospital in St. Louis, MO.

For years in the 1990s, I had a non-productive cough. The local pulmonologist sent me to get a chest X-ray which came back with a diagnosis of COPD. He believed I had pulmonary fibrosis and did not agree with the COPD diagnosis. He asked me to go to St. Louis or Denver to get a high resolution CT scan. On Valentine’s Day in 2000, I had a CT scan of my lungs at Barnes Jewish Hospital in St. Louis, MO. The radiologist reported that I had pulmonary fibrosis.

I went that summer to the National Jewish Research Center in Denver for a second opinion that included testing and a biopsy. Their diagnosis was idiopathic pulmonary fibrosis. They treated my disease. My Denver doctor wanted me to get on the list for a lung transplant and agreed that Barnes Hospital in St. Louis would be a good choice.

After four days of testing in December, 2000 at Barnes, Dr. Trulock told me that I was accepted into the program and would be put on a waiting list for a lung transplant. I continued my treatment in Denver and went yearly to Barnes following their instructions for preparation for a transplant. They gave me directions for the various requirements to be eligible to receive a transplant–immunizations, dental health, weight reduction, pulmonary rebab, transportation to the hospital within two hours of being called, etc.

In 2003 when my decline in lung function leveled off, they told me to go on the inactive list until I was closer to needing a transplant. That fall my declining numbers led my doctors to have me return to the active list. In the spring of 2004, my wife and I started preparing in earnest for moving to St. Louis for the transplant. The staff of the Barnes Lung Transplant Program helped us prepare for transplant–assisting in giving us suggestions for housing, pre-transplant education, post-transplant education, where to go and what to do when you receive the call to come for the transplant, etc.  Their preparation was thorough and professional.

In April 2004, My president and dean allowed me to leave my college classroom three weeks early, and we moved to a furnished apartment in St. Louis near Barnes Hospital. On June 15, 2004 Dr. Myers performed my double lung transplant. Dr. Trulock, head of the medical transplant team, Dr. Hashem, and others have given me excellent care both before and after my transplant. Barnes provides pre-transplant and post-transplant coordinators, including Jan, Stacie, Tracey, Laura, Carol, who can be reached twenty-four hours a day when needed. Being highly knowledgeable, they are helpful in assisting one in dealing with any problem that arises. Tiffany and others who answer the phone when I call the Transplant office help in any way they can.

During the first year after my transplant I faced many problems, ten times making the 300-mile trip to Barnes from my home near Joplin, MO. I had mild rejection two times, but medication took care of it. In spite of some limitations, I have been grateful for this extension of my life. I retired from the college classroom in 2006 to spend more time with my family and do some writing.

In the last few months, I have had some challenges. In December 2011, my breathing function declined significantly and was diagnosed as chronic rejection of my lungs–a scarring of the small airways in the lungs. I received four days of infusion treatment at Barnes and returned home. In March 2012, I was coughing and ill. A swab test indicated I had RSV–a respiratory virus that is extremely serious for immunosuppressed persons. Again I had four days of treatment in the hospital for this virus. This year has been an uphill battle.

I am deeply grateful to the staff at Barnes Jewish Hospital for my lifesaving transplant. They know what they are doing in dealing with transplant patients. They care for you as a person, not just as a patient to be treated. A week after my March hospitalization at Barnes, I got a call from a nurse asking how I was doing, if I had any questions, and if they could do anything for me. Later I got a card signed by workers on the floor of my hospital room wishing me well. The staff has been as interested in keeping me as well as possible after transplant as they were before transplant.

I write this to say thank you to each person at Barnes who has served me in any way these past twelve years. I give tribute for a job well done. It would be impossible to assess the significance of your work of saving and extending lives. Keep up the good work.

 

 

 

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.

Celebration of Life

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. Continue reading

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