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THE JOURNEY - SHORT VERSION

December 21, 2016

Humor has always been vital to me.  Premature birth and a childhood of second-hand smoke, (Thanks, Dad), left me with lungs that would never allow me to be the star athlete, the guy that people admired due to his physical abilities.  Humor, the ability to make others laugh, to laugh with them and at myself, seemed to draw people to me, to make them comfortable around me.  It is hard to have a sour attitude if you are laughing…

Even though I myself smoked for 20 years, beginning at about 15, I was really quite active outdoors in the earlier years, hunting big game in the Colorado mountains, fishing and boating on Lake Powell in Utah, and tearing around the hills on a Yamaha dirt bike.

It was one of the Lake Powell trips that finally made me quit smoking.  A buddy and I were fishing and swimming, and I apparently inhaled a really nasty bacteria that landed me in a hospital bed with an oxygen tube up my nose for the first time in my life.  Double bacterial pneumonia.  As I lay there, I kept having a vision of a skinny old guy shuffling along, oxygen cannula in place, dragging one of those big oxygen bottles.  I had smoked my last cigarette.

Wasn't easy, but I was blessed with a fine case of the stubborns, and that got me through the withdrawals.  My attitude did suffer somewhat during the first few months.  My lovely and mostly patient wife, Mary, repeatedly offered to either go out and buy me a carton of cigarettes or kill me in my sleep.  My choice. 

THE VISION GETS NEARER

As the years went by, I found myself doing more fishing and less hunting, more traveling by motor home and less jumping over things on a dirt bike.  Like most, I was beginning to compensate for the deterioration of my lungs.  Finally, after repeated pulmonary infections over the next few years, the VA Hospital in Grand Junction, Colorado treated me to my first Pulmonary Function Test.  The results were staggering!  I was 55 years old by this time, and I hadn't smoked for 20 years, so there was always the hope that the skinny old guy would be held at bay.

Wasn't to be.  My lung function was dismal, 33% of what it should have been. I was diagnosed with severe COPD, the third of four stages of the disease.  Stage four is also sometimes called “end stage”, which is a bit of a misnomer, but nonetheless disquieting.  It was explained to me that I would continue to lose function, and that I really should begin using supplemental oxygen for sleeping and especially for exercising.  I listened, stubborns aside.

ENLIGHTENMENT

Predictably, the lungs continued to get weaker, the breathing more labored, the shortness of breath more frequent.  Western Colorado became a struggle.  Finally, at age 65, we sold our accounting practice and moved to Tucson for the lower elevation.  I was actually able to survive without the oxygen for a couple of years in Tucson, but then the progression again reared its head.  Back on O2 for sleeping and for exercising.

The stubborns took over again.  I set out to learn all that I could about my disease, in order to better deal with it.  In doing so, I became involved with the American Lung Association as a teacher and inspirational speaker.  I vowed to become, and have in fact become, the rare COPD patient who exercises religiously, talks about COPD to anyone who will listen, and who anticipated dying with the disease, rather than because of it.

I taught COPD classes and talked to patients, caregivers, and potential patients for their benefit, to try to help them understand and cope.  However, the big secret (maybe not so big....) is that it helped me more than it did them!

SALVATION!

One of the subjects in the classes was lung transplantation.  It is the only true cure for COPD, pulmonary fibrosis, and a host of other lung diseases.  It is major surgery, a massive insult to the body of the recipient, but it removes the offensive lungs.  It is a procedure reserved for those lung patients who are otherwise in good physical and mental condition, but who are obviously headed for the exit due to the deterioration in their ability to breathe.

A good friend attended one of my classes, and revealed to me that he had been diagnosed with pulmonary fibrosis.  He was facing an almost certain death, an eminent death, without the intervention of a transplant.  We kept in touch, and I was delighted several months later when he called to tell us that he had just received two new lungs!  He urged me to investigate the possibility of a transplant for myself, but I protested that I was 71 years old!  I had already done a bit of investigating on my own, to the point of being turned down by one transplant center.  Their age limit was 65.  Bob informed me that he was 72, and that I was being an idiot if I didn’t contact the transplant center at St. Joseph’s Hospital and Medical Center in Phoenix.

Figuring that I had little to lose, I made the phone call that was to totally change my life…turns out that all of the research, the exercise, and the stubborns that kept me going all of those years were to finally pay off!  Mary and I had tried our best to stay healthy, to keep our bodies and our attitudes in good shape.  We had the first of many meetings with the transplant team, and were approved for the amazing variety of tests that were to determine that, despite 70 years of things like bacon cheeseburgers, I was in remarkably good shape.  The lungs, not so much, but that was what we were determined to fix!

One of the things that is vital to a successful transplant experience is a loving, selfless caregiver.  It was soon obvious to the team that I had exactly that.  Mary and I were working on our 49th year of marriage, and have one of the best relationships anywhere.  Ever.  Our relationship had of course changed over the years, as my lung function interfered more and more with my abilities to carry my end.  As it is with COPD patients and caregivers everywhere, it was a gradual process.  We adapted physically, mentally, and socially over the months and years.  If there is an advantage to a slowly developing chronic disease, it is that it gives the participants in the little scenario time to adjust to the “new normal”.

The excitement and terror and the nervous anticipation of the testing period, the endless interviews, the determination to exercise really, really hard and stay healthy, even though it took 9 liters of oxygen to manage the treadmill, finally paid off with the call informing me that I was listed!

More exercise, packing our “go bags”, keeping the car gassed and ready, and jumping every time the phone rang took over our lives.  I figured that it would be several months at the minimum, given that I still felt fairly good.  I was obviously losing ground, but the relentless exercise had assured that I could still manage most daily tasks, albeit slowly.

Then, 39 days later, an unfortunate young man met an untimely death.  He had expressed his generosity, his love for others, by signing an organ donor card.  We know only that he was young and obviously healthy.  We have since learned that he was able to offer other of his organs to other recipients.  The lungs were healthy and uninjured and beautiful!

After an incision that ran from underarm to underarm, a severed sternum, the opening of my chest like “the hood on a pickup truck”, as one surgeon put it, my old failing lungs were replaced with the fabulous new ones!  A titanium plate to rejoin my chest bone, 68 surgical staples, and a literal web of wires and tubes later, I woke in Intensive Care to see Mary’s tired but smiling face.  Standing beside her was our daughter, Wendy, grinning as widely as it is possible to grin!

Ten days in the hospital, two months in temporary quarters in Phoenix, and we found ourselves back home.  It is truly impossible to express my feelings when I again looked out on our view of the Tucson Mountains.  My outlook, our outlook, had changed from the resignation of a continued slow slide toward death to the uncertainty of a life of handfuls of antirejection drugs, a limited immune system, and increased susceptibility to infections and some cancers.  However, there were, are, also the possibilities of more years, maybe many more years, with my lady!

God, the possibilities!

We are back to exercising, socializing, and generally living our lives.  We are now involved with the national COPD Foundation as Arizona Advocacy Captains.  We have developed classes on living with, dealing with lung disease for patients and caregivers that we present to anyone who will listen, under the auspices of the American Lung Association in Arizona.  We act as Arizona Ambassadors for EFFORTS, the international online support group.  We have received the Chairman’s Award, the highest award given by the ALA in Arizona for volunteerism.  I was recently honored as Volunteer of the Week by the national ALA, and we were asked to travel to Washington, D.C., to meet with legislators about respiratory therapy and lung disease awareness.

Since the transplant, we have presented at COPD conferences for the COPD Foundation and for Pulmonary Horizons, doing our best to spread awareness and to improve communications between the medical community and the COPD community.  We have traveled to Chicago (twice), San Diego (twice), Miami, New Jersey, and London, England.  We were also invited to participate in the COPD Town Hall at the National Institute of Health in Bethesda, Maryland.

We are trying our best to give back.  Again, we know that we are helping a lot of people with our efforts to spread awareness about lung disorders to help them get through their days with compromised breathing capacities.  However, we would be less than honest if we didn’t admit that it still helps us as much or more!

Uncle Jim and Aunt Mary

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