Travels with My Reservoir … Or Gasping Across State Lines

Image For more than two decades, my family has made an annual pilgrimage to Sanibel, Florids. It’s our own slice of island paradise for one week a year — sun, sand, shelling and the luscious smell of sea air.  In the past, we also flew to Sanibel to maximize our short time there. But, since my diagnosis with PF, our travels have grown increasingly complex.

We were still able to fly for our first visit post biopsy. I rented a portable oxygen concentrator (POC) that worked for both the flight down and my activity while on vacation. At the time, I didn’t require oxygen while at rest, so the relatively low flow rate of a POC was just fine.

Six months later, we made a second visit to Sanibel. This time I was on oxygen 24/7, but my requirements were still fairly low — 3 LPM (continuous) at rest, 6 LPM (continuous) with activity.  Since portables offer only pulse settings at 6 LPM (and only a couple of models go that high), I knew a POC would not work for the entire trip.  We had to come up with a different alternative, and it was immediately clear that we had to drive.

While my husband and kids psyched themselves up for a 21-hour drive, I worked on piecing together my vacation Os plan. Usually, your home provider works with a provider at your destination to coordinate services.  My home supplier, however, is a local company with no ties to national suppliers. They said they were unable to arrange any support — I’d have to carry everything with me.  So, I rented a POC that we plugged into the car and provided me with a continuous 3 LPM for the drive.  We also brought my full-size 10L oxygen concentrator plus a home fill unit and 4 bottles of varying sizes.  I filled the bottles before we left, and used those for meal and potty stops along the way.  Once we arrived, the full-size concentrator met my needs at the condo, and kept my bottles full for jaunts around the island. All in all, it worked beautifully.

This year however, my oxygen needs were much greater — 6 LPM at rest and 8-15 LPM with activity. The same plan wouldn’t work. I still use my 10L concentrator at home, but I’ve graduated to liquid O2 for my portable needs because I get much more time out of a liquid portable (about 3 hours). Liquid isn’t perfect, though.  It boils off over time, so a portable bottle that was full the night before will be only half-full in the morning. So, filling a bunch of liquid portables for the trip down wouldn’t work.  Taking my full-size 41L liquid reservoir wasn’t an option either — it stands about 4 feet tall and weighs in close to 200 pounds when filled. There was no way we were going to heft that breathy beast into the minivan, and then drag it up a flight of steps to the condo in Sanibel.

Not my van, but this is what it looked like.

Liquid reservoir, concentrator, E tanks for reserve

Still, liquid was the only way to go to meet my breathing needs for the ride down. I borrowed a  21 L reservoir from my home supplier. It’s about the size and shape — and looks amazingly like — R2D2, and holds enough to last me almost 48 hours (1 liter of liquid O2 converts to 814 liters of gas).  Now, I just had to find someone near Sanibel to refill the reservoir during our week’s stay.

After a few calls to oxygen suppliers in the area, I began to understand why my home supplier had given up the year before. No one wanted to supply oxygen to someone who wasn’t their patient, especially someone from out of state. Many said they didn’t offer liquid O2. Finally I tracked down one supplier that grudgingly agreed to refill my reservoir, if and only if I gave them 24 hours notice, arrived at their location between 8 and 8:30 in the morning (the only time their driver was available), and agreed to pay cash.  A girl’s gotta breath, so I said yes.

When I called to make my final confirmation two days before the trip, the person who answered said they had no idea what I was talking about. Panic started to dance around the edges of my brain. After a bit of begging, she agreed to the previous plan.  But their office would be closed both Monday and Friday, and she couldn’t guarantee that the driver would even be there that week. With some more begging, I got the name of their O2 supplier.  While commercial suppliers can’t service patients directly, maybe they could suggest another retail supplier. I got two names and an unsolicited promise of further help if those didn’t work out. Finally, a glimmer of that famous southern hospitality! The first company I called was Rotech, and Todd said he could fix me up no problem. They even drove out to island to pick-up and deliver my refilled reservoir, and let me borrow one of their reservoirs for our stay. (Rotech didn’t show up on my initial internet searches for local suppliers — work on your SEO guys!)  The trip was a success, and breathed easy the entire time.

Traveling is getting more complicated and requires a lot more planning, but it is still possible. With a little tenacity (and a bit of human kindness), I know I’ll be able to continue traveling as long as I have the strength to go.  I look at my oxygen as I do eye glasses, a pacemaker or a wheelchair — it’s a tool that helps me live my life to the fullest.  It’s my choice, not my circumstance, that dictates whether I use the tools available.  And I choose to enjoy what I have with whatever support makes that possible.

TRAVEL TIPS:  Start early to make plans for traveling with oxygen — at least 4 – 6 weeks out:

  • Airlines do not allow oxygen in liquid or gas form. You can, however, use a portable oxygen concentrator — contact your airline to get specifications and necessary paperwork.
  • If you use a national oxygen supplier, they should be able to coordinate your oxygen needs at your destination, and run the costs through your insurance. Keep a copy of your oxygen prescription with you at all times.
  • Make sure to plan for more than your estimated travel needs (airlines require 150%) so you will be covered if you get stranded or waylaid.
  • Call to confirm before you leave.
  • Plan early, then enjoy yourself!

12 thoughts on “Travels with My Reservoir … Or Gasping Across State Lines

  1. You have always been such an inspiration to me. Everything you write about in your blogs, I use as advice to pass each and every individual I work with who has a special need of some sort, and it always works. Never stop smiling as much as you always do because that’s truly what makes you, you. Danny called me every night of the trip to tell me how you were Doing because I was so worried about you. Every time he called he said something that made you very happy to just relax and enjoy your family vacation, which is great. If the 4 of you go next year, I’ll be more than happy to take care of Mac for free. I’m always here for you and your family and remember to come to me if you just need to vent, need a laugh, or want my mother’s chicken pot pie and chicken soup. I promise I will learn how to make it. I love you Lori, keep on staying as strong and beautiful as you always are. Your words of wisdom travels everywhere, I go.

  2. Once again I am spellbound, as someone already commented, by your incredible writing! And inspired by your positive outlook and determination…you are one of my heroes! Thank you for sharing your journey! Did you have a good time?

    • We had a great time, as we always do. There is always an almost audible “hiss” when we step into the condo for the first time as the stress and tension releases. Love you guys!

  3. Rotech has been an amazing company to me through the years. Even after we lost our insurance and could no longer pay, they continued to service all my oxygen needs above and beyond. Even transferring me with the same no cost provisions when we moved to FL. Since being sent home from the hospital on hospice, I had to have my supplier switched to the hospice one. The new one has been great too but I will always have a special place in my heart for Rotech.

    We live only 40 minutes from the beach but it takes a lot of planning and organization to make that trip. Two sizes of tanks with different regulators and two poc’s later and we got it. Thank God I have an electric wheelchair to get me to the island’s edge and a cute lifeguard with a beach wheelchair to greet me there. It does make hauling the tanks a bit easier.

    But there’s nothing like the warm smells wafting on fresh Gulf breezes, a good book, a beach umbrella, a cold drink, sand between your toes and some good looking eye candy to peruse from behind over-sized sunglasses to have made it all worthwhile. Yep, gotta love the beach ~ traditions and all. ((Hugs))

    • Ahhhh…. you’ve described beach paradise to a T! The condo we stay in is right on the beach — across a couple of hundred feet of decking (the photo above). So I can take my time getting out there, open a chair close by in the sand and plop myself down. The world kind of melts away around me then…

  4. You inspire me, Lori. We take our breathing for granted. It is a blessing to have body parts and health and we continue to think of you and pray for you. All the planning does read like a suspense novel. Kudos also to your loving family. Aunt Wanda Lou.

  5. Wow, that was like reading a suspense novel. I bet that was nerve wracking when 2 days before they did not know what you were talking about. SO glad you got to go…I know how much you guys love it down there. Keep up the Traditions.

    • I should have known something was up when they never wanted my name or number. The good news is I have a new home supplier and they are national, with an office in Ft. Myers. So — next year should be easy-peasy 🙂

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