Pulmonary Fibrosis

hands on book

Pulmonary Fibrosis by Elaine Walton

My husband and I had established a pattern of traveling for my work as well as for pleasure long before the diagnosis of pulmonary fibrosis. We’d been all over the world together. He was a family history enthusiast who had recently published three books about his ancestors.

One summer his research took us to England, Scotland, and Northern Ireland. We’d been traveling a few weeks gathering information for what turned out to be his fourth and last book, when I noticed that he was slowing down and needed frequent rests.

On our next excursion, a month before the doctor’s diagnosis, we traveled to Colorado with his daughter and son-in-law. We two couples had often traveled together in the past and the trips had always been very enjoyable, but this time I saw how difficult it was for my husband to keep up. To climb a flight of stairs fatigued him. This wasn’t like the man. He was a big, strong fellow who never complained. I became very concerned.

His Diagnosis

We both knew something was wrong, so the diagnosis of leukemia and pulmonary fibrosis a few weeks later did not take us completely by surprise. But when we found out, it meant we had some decisions to make. We had to take stock of how to spend the little time remaining. At that critical juncture we decided we would not stop doing the things we loved, and travel was one of them.

The leukemia diagnosis accounted for much of his fatigue, but the diagnosis of pulmonary fibrosis meant he would be dependent on continuous supplemental oxygen. That made travel tricky, but not impossible.

Additionally, my husband was determined to finish the book he was currently writing. A visit to the little town where his ancestors had been some of the original founders was central to this goal. To take this trip, I needed to do a new kind of planning. There would be time outside of the car and the hotel room, such as the hour or two while we were in a restaurant or at an historical site, when he would need portable oxygen. But I knew that oxygen tanks wouldn’t be enough; it would take too many.

Even though the bottled oxygen was easier to carry, I also needed a portable oxygen concentrator. A concentrator pulls oxygen out of the air on a continuous basis, so there’s an ongoing supply. I was able to obtain a concentrator from a local medical supply provider (at no charge because of his insurance). The down side is that the machine weighs 22 pounds, is quite noisy, and I had to carry it. But it fit conveniently in the back seat of the car and I could plug it into the cigarette lighter. In the hotel I plugged it into a regular electrical outlet.

Other changes were necessary, too. For one thing, we walked more slowly than before and all other physical activities took longer. For another, we were more selective about how we spent our time. At the beginning of every day we decided in advance exactly where we wanted to go and what we wanted to do. Prioritizing activities became essential because we knew his energy would soon be depleted each day.

My husband wanted to take pictures of the area where his ancestors had lived to include in this fourth book. The very best view for a photograph required a little hike of about a quarter-mile on a trail to the edge of a precipice overlooking the little town. That picture meant a lot to him. He felt like it was key to his book, and the hike was worth it.

With a carefully honed itinerary, every day was fun. We’d go to a nice restaurant for lunch and dinner, and we were able to do everything we wanted to do as long as we allowed ample time. We enjoyed the time together with more intensity than perhaps ever before.

A Beloved Retrospective

Our last trip together was something of a beloved retrospective. Over the years he had done amateur theatre whenever he could and he loved to read the famous Shakespearean monologues. So we made the effort to attend his last Shakespeare festival. This trip required a wheel chair because his energy had dropped so low. His daughter and son-in-law came with us because of our past experiences traveling together and so they could help me carry the apparatus that made the trip possible for my husband.

I found that when you’re pushing someone in a wheel chair, or when you’re with someone who is pushing an oxygen tank, people tend to be very gracious. They go out of their way to be helpful, to make room for you, to open doors for you. I noticed a common, gentle goodness in people’s attitudes and I was grateful.

My husband was weak and tired, but that didn’t stop him, and the oxygen helped. Everything he did was an effort, but it didn’t mean it wasn’t a worthwhile effort. We were grateful to be able to get out and do what we wanted to do instead of sitting at home and watching TV. It was truly a lovely experience that I’ll always cherish.

He lived twenty months from diagnosis to death, which was longer than the doctor expected him to live, given his age of eighty years. But I believe his life was extended because he had purpose. He had a project to finish.

Two weeks after my husband held his fourth book in his hands, he slipped quietly away from us.

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