Months before my idiopathic pulmonary fibrosis (IPF) diagnosis, my wife Rebecca and I met a young engaged couple. Stephanie was a teacher at the school where I worked in Ohio. She’s from Kansas, so I affectionately refer to her as “Dorothy.” Her fiancé, Connor, was in his third year of medical school. They planned their wedding for July 2015 in Kansas and invited us because we’d become their Cleveland parents, sort of.
Before my health took a bad turn, my wife and I had discussed making the trip. At the time, my oxygen needs had increased, so flying was out of the question. We decided to drive.
During the trip, we also wanted to see my daughter Angela, who was living in Clarksville, Tennessee, with her husband, Joe. Angela and Joe’s would be our final destination before returning home.
In preparation for the journey, my good friend Mark made a contraption capable of holding 24 E-sized oxygen tanks. The construction ensured the tanks’ protection from the elements and easy accessibility. I got some extra oxygen rack holders and Mark built a wooden box to surround them. The box was insulated with foam and covered with a type of insulation cloth. It was so well put together that the tanks didn’t make a sound while in transit.
We put the box into the payload of my pickup, and it was the correct height to be protected by the truck cover. We predicted that temperatures in Kansas would be extremely hot, and we were correct.
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Apria Healthcare was my oxygen supplier at the time. I needed to refill my tanks several times per week to ensure I had enough at work and for other activities. The workers were helpful, emptying and loading the truck as required. The company also has a travel support department.
I notified the travel support team of my plans to travel in the Midwest. They told me they would place an order and I could avail of refills at any of the Apria locations in the U.S. I mapped out our route and found convenient stops along the way.
When traveling with oxygen needs, it is crucial to plan your trip carefully and prepare for any unexpected events. On this trip, one tank lasted for two hours of driving, so I knew I would not need another supply of tanks until we got to Kansas. (We brought my home oxygen concentrator for use in the hotel room.)
I planned our trip, factoring in designated stops to avoid exceeding eight hours of driving. Packing up the truck was tedious, as everything had to fit under the truck’s cover, including my wheelchair and a 50-pound home oxygen concentrator. Rebecca had just recovered from a shoulder separation — I found it difficult to watch her struggle to load the gear.
With each item finally placed neatly into the truck like pieces of a jigsaw puzzle, Rebecca, my dog Lucy, and I set off. I wondered if it would be the last time I would be able to do something like that. I wasn’t willing to let my limitations stop me from attending the wedding and visiting my daughter. The trip lasted 12 days. We didn’t encounter any problems picking up my oxygen tanks and although the heat in Kansas was severe, Rebecca was a trooper, loading and unloading the truck at each overnight stop.
Looking back at the trip, I am glad I did it. I hope you don’t let your disability prevent you from pursuing your heart’s desires.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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