The Time I Took a Road Trip with My Oxygen Tanks

Mark Koziol avatar

by Mark Koziol |

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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.

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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.

Comments

Cathy avatar

Cathy

how many tanks did you use on this trip??

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Mark Koziol avatar

Mark Koziol

Hello Kathy, thank you for reading and responding to my column. Over the course of 11 days I went through approximately 65 tanks. At night I used our home concentrator and of course through out the day I used an E sized tank. We tried to keep busy during the day. We also had a wedding to go to. I stopped at three locations to replace my tanks. My wife is very interested in presidential libraries and museums, we went to 4 of them on our trip. Like I said she was a trooper but a funny story; at the Andrew Jackson museum in Nashville, my wife and daughter almost lost me on a downhill walkway. They lost their grip and away I went. They ended up catching me but I went for a little ride. Thank you again. Hope I didn’t bore you with my little anecdote.

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Kelly avatar

Kelly

This is what I used to tell my mom. As her caregiver, I didn’t care that I had to plan every minute detail, things I would never dream of. Things like ‘does the hotel have chairs she and dad can sleep in because she can’t sleep in a bed’. How many tanks do we have and add a few more for traffic issues. Are there alternative routes Incase there is an accident? It was always worth the extra work, the extra planning. It meant she was still living. So go ahead, make the extra plans, make the trip.

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Mark Koziol avatar

Mark Koziol

Thank you Kelly, your comments are valuable to me and others who are reading this column. Especially those who are thinking about taking a trip. I’m happy your parents had/have a caregiver as yourself. Look at the memories that were created because you went the extra mile to be there for your parents. As a person with this disease I thank you from the bottom of my heart for being there for your parents.

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Blair avatar

Blair

what flow are you on? why didn't you use a POC of liquid oxygen if it's available?

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Mark Koziol avatar

Mark Koziol

Thank you Blair for reading and commenting on the article. I was on 2 lpm at rest and 6-8 lpm at exertion. The prescription was written for using the tanks and I really didn’t mind using them. I had a safe place to transport them and they were readily available for pickup.

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JUDY KRASOVEC avatar

JUDY KRASOVEC

I'm hoping to go to Ark in the fall a little anxious about it and how to travel with the tanks. ( bullets) I just got out of hospital with a COPD flare and blood clot to lung. Any thoughts ??

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Mark Koziol avatar

Mark Koziol

Hello Judy, thank you for reading and commenting on the column. I assume you will be driving? First of all make sure your tanks are stabilized and away from a heat source. Make sure you have enough tanks. Hopefully your oxygen provider is nationwide. If they are; call their national number and inquire if they have a travel program. While you are driving, try to stop every hour or so and get out and stretch and maybe take a short stroll. I am posting a couple of websites to assist you in your trip.
https://www.1stclassmed.com/blog/24-travel-tips-every-oxygen-patient-needs-to-know
https://www.sparkpeople.com/resource/fitness_articles.asp?id=2054
https://www.healthxchange.sg/fitness-exercise/exercise-tips/exercises-you-can-do-car
Judy it is very important for you to keep active on this trip especially since you recently had a blood clot. Do as much as you can but don’t overdue it. If you are traveling by plane, please comment again and I can provide some other tips for the plane. Thank you
Mark

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Diane avatar

Diane

Recent dx of COPD. On O2 24/7 at a flow of 4 resting and 5 on extertion. I don't know what all the different tanks are named. Or how to figure out how much I am going to need for 11 day trip .

Is. There any way to send lame a picture of the item your friend built to hold the tanks upright. In your truck

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