Contributed by Jim Nelson, consultant to CAIRE Inc. ~
It has been suggested that I interview someone with lung disease as a subject for my blog posts. I decided that, as a beginning, I tell the story with which I am the most familiar… ours.
Jim and Mary Nelson – Our story – Part 3
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 no idea whether he was able to offer other of his organs, but 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.
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, no 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.
We have since traveled from coast to coast and to London to speak to patients, caregivers, and medical professionals, educating and hopefully inspiring them. We write about everything to do with breathing for several Facebook support groups and for a blog.
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 Mary
Jim Nelson is a double lung transplant recipient and a patient advocate for COPD patients throughout the U.S. and around the world. He and his wife, Mary, are well known patient advocates and brand ambassadors for those organizations who tirelessly endeavor to help those individuals who suffer from a variety of respiratory diseases and the caregivers who support them.
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