Traveling for the First Time

Traveling is a challenge. Because of having no immune system, I cannot fly on a plane or travel on a cruise ship. If I get a cold, it can be dangerous. If I get the flu, it can be fatal. So, we had to learn how to travel in a way that would not put my health at risk.

We failed the first time we traveled after the diagnosis. Michael’s mom lives in Las Vegas so we went for visit. On our way home, my ankles swelled to at least four times their regular size and Michael had picked up a virus to shared with me while we drove home for nine hours. I lost a lot of lung capacity with that virus.

I swore I would never travel again.

Luckily, the rehab nurses said that they would teach me how to travel in a safe manner. I learned to stop often, get out of the car and do my rehab stretches. I was also told to drink plenty of water, snack on fruit and wear compression hosiery to keep the fluid moving in my legs. They said to wipe down the hotel rooms with Clorox wipes, wash our hands and keep Purel in the car. With these tricks under our belt, we took a short trip to visit our son to see if I could travel without getting sick. It was a success. We then tried short trips. Great!

The other problem with traveling is that I need oxygen to sleep every night, in high altitude, walking uphill and stairs. In the beginning, we ordered the oxygen to be delivered to the hotel where we were staying. That was fine if we were staying somewhere for several days but it is problematic on long trips with different nightly stops.

We are travelers. We have been to most of the states and many cities throughout the world. But, we like to wander, not always knowing where we will be the next night.

Some wonderful person invented a portable oxygen system that is a concentrator. It takes room air and transforms it into supplemental oxygen delivered at a specific level. I need 2 liters. It is on wheels and can be used in the car, on airplanes, and in hotel rooms. Originally, they cost around $5,000 and were not very dependable. After three or four years, they have become smaller and much more refined. They now run about $3,500. The good news is that they can be rented for around $350.00 a month. Bingo. We have taken two long cross-country trips in the last two years. I have never gotten sick.

Here is a photo of one of the systems:


It feels so good to be able to get out and see the world. We still can’t fly, still avoid crowds, but we follow the advice taught to me by the rehab nurses so we can travel safely.

We are planning our next trip up the coast from Key West to Maine.

Next: Playing the Hand I’m Dealt