The Breathless Traveler
by Ed Long 1997

What's it like to travel with a respirator on an airplane? Ed Long shares his insights about a life-threatening flight that took him from San Diego to Boston and back again.

On previous trips, Ed Long traveled throughout the U.S., Canada, Mexico, India and Japan. But recently the weakening of his diaphragm muscles (due to Muscular Dystrophy) made it necessary for him to use a respirator to breathe.

Several bouts with pneumonia slowed Long down a bit, and he thought his traveling days were over forever, but in 1993 he decided he was strong enough to travel to Boston (his hometown). It proved to be a challenging but rewarding trip, and Long found his travel horizons broadened forever.

In January 1993, I began to think that maybe I could travel to Boston. My wife Sachiko was willing and my five-year-old daughter, Yuuki, was anxious to see her Nana. My sister Jeanne, who lives in Maui, offered to fly to Boston with us to make the trip easier.

While I wanted to go I was afraid. Traveling without breathing was very different. How could I get on the plane with a respirator and down those narrow aisles while keeping hooked up to the respirator? Where would the respirator fit when I was in my plane seat? What if it broke? I always have an Ambu bag near me. That's a small bag that is held to the trach opening, and when squeezed in and out enables me to breathe, but who could squeeze the bag for hours? I used a big tank of oxygen in my bedroom. Could I go without it for a week?

I kept putting off calling the agent, but one day I felt a surge of scorn for myself and my timidity. "I went to India for crying out loud!" I said to myself. "I'm not letting fear keep me from traveling!" I called a travel agent who specializes in disability. I told her I'm in a power wheelchair, and use a portable respirator 24 hours a day, can't get out of the chair myself and wanted four round trip tickets to Boston. I requested bulkhead seats as they provide more room and are nearer the front of the plane. I also requested non-stop flights so we could avoid changing planes.

I decided to take two manual chairs, one for myself and one for the battery and respirator. American Airlines said my respirator, a Lifecare PLV-100 was okay as long as it could fit under the seat. The travel agent was able to get us a direct flight with American Airlines along with the coveted bulkhead seats, but a sudden change in our travel plans forced us to take a flight that required us to change planes in Nashville on the way to Boston and in Los Angeles on our return to San Diego.

I then called Lifecare and asked if Boston could supply me with an alternate respirator in case something happened to my main one. I also needed a Gomco suction machine as a stand-by to my portable one. Suction is necessary to clear my throat and keep secretions from choking me. Lifecare assured me the necessary equipment would be awaiting me in Boston.

June 5th was a beautiful day in San Diego, but I was too nervous to pay much attention to the weather. As the van took off from our house though I felt the old familiar joy of taking off for the unknown, and the glorious feeling of a new adventure. I was on the road again.

Arriving at the check-in, we learned that there were no bulkhead seats available except ones that were on an exit row. Since I was not ' exit row eligible.' This meant we'd have further to go and a more difficult transfer into the airplane seat. The respirator was no problem, but the wheelchair batteries were wet cell and had to be removed from the chair and packed in spill-proof containers.

American Airlines was, however, confused about my needing two chairs, one for me a one for my respirator. A couple of days before leaving. I called to make that request and was passed from one person to the next. After a long time, I ended up in the Medical Needs Department. "We're not allowed to let anyone use two chairs," they said. "Someone else might need to use one of the chairs at the same time you do. After a big discussion, they said the check-in crew would find a cart for my equipment, as there was no way I could have two wheelchairs. At the airport, however, there were wheelchairs all over the place, and the check-in person motioned to the wall behind me and said," There's two over there. Why don't you use those?" As simple as that!

When we were ready to board the plane, Sachiko took the respirator off the chair, and placed it on the floor. I was still connected to it. Then she disconnected the respirator battery. Without an external battery the respirator transfers to its internal battery which can run for about 20 minutes. After those 20 minutes, the respirator shuts off and it's time for the Ambu breathing bag. Next it was time for Sachiko to transfer me from my power chair to the airport chair. This is difficult because neither the footrests nor the armrests are removable on airport wheelchairs. She disconnected the respirator, and quickly lifted me over then connected me again. I can do without the respirator for about 30 seconds. After that it's panic time.

The crew showed up to dismantle my power chair, and then we had to rush for the plane. We took off at run, Sachiko pushing me, and an airline attendant pushing the chair holding the respirator. My sister Jeanne carried the bags and my daughter Yuuki trailed along behind.

At the boarding desk, the last passengers had gotten on, so we hurried down the boarding passageway. The aisle was too narrow, so I transferred to an aisle chair. This is a narrow seat with a high back and wheels. There was plenty of help to transfer me. Sachiko disconnected the respirator then re-connected it when I got on the aisle chair. This is always the most crucial part of any plane flight, even without a respirator. The airline people are nervous about the flight being late. This is the time the disabled passenger must stay calm and speak up, making sure their needs are met. When we got to my seat, Sachiko took the respirator from the helper, and put it on the middle seat, the battery went next then she transferred me and reconnected the machine. As the plane took off, I felt pure joy. We had done it! The hardest part was over. I had to be suctioned a couple times during the flight and got some funny looks, but other than that there were no problems.

In Nashville, Sachiko transferred me to the aisle chair, and I remained in it as we headed for the next gate to our Boston flight. We made quite a parade, me in the aisle chair being pushed by the flight attendant, Sachiko in front holding my legs, walking backwards, someone else carrying the respirator, trying to stay as near to me as possible, Jeanne loaded with bags behind us and Yuuki running around, talking to anyone who would listen. This time we got the bulkhead seats and everything was much easier.

Arriving in Boston, everything went smoothly, and it was exciting to see the skyline again. All this changed when they brought me my power wheelchair. The modulet containing the electronics was bent, the chair arm was also bent, and one of the batteries looked completely destroyed. Fortunately, two mechanics from plant maintenance put an automobile battery in my chair and it worked!

We took the Handi-Trans into Boston and drove to my mother's house. The equipment awaiting me didn't work well, so I had to depend on my own machines. In spite of all the tension created by the technical hassles, I had a great time in Boston with family and friends.

Six days later we were back at the airport going through the same process, and it all went smoothly. In Los Angeles, we only had 30 minutes to change planes and catch our San Diego flight. Fortunately, they held the plane for us, and even put us in first class which made things easier.

It's only a 40 minute flight into San Diego, and about 10 minutes into the flight my respirator began to creak, the signal that the external battery was running down. That creaking alarm meant that in a few minutes the respirator would switch over to its internal battery, and then three minutes later it would shut off completely. We landed okay, then tried to charge my chair a bit before taking a bus back to our home as a van cost $40. Jeanne and Yuuki took a cab.

We made it to the bus, and got on, but then the respirator alarm sounded the alarm and went over to the internal battery. The ride to our home would take 40 minutes, but the respirator would only last 20 minutes. The simple mathematics were frightening. Sachiko was ready to grab the Ambu bag and give me air, but getting off the bus while using the bag would be very difficult. She wanted to get off the bus, find a store and recharge the battery, but I kept saying, "Don't worry , we'll make it."

The bus seemed to take forever, and it was becoming more difficult to get breath. Even though I was in a desperate, life-threatening situation, I still felt a joyous exhilaration. I was on the edge, pushing the envelope, pushing my limits as far as they could go. This was the old Ed Long, the man who went to India, the man who went white water canoeing, the man who climbed half way up Mt. Fuji. Finally, we reached the bus stop near our home, but it was getting harder to breathe. At last the driver lowered me on the lift to the sidewalk. We still had five blocks to our home, too far for me to make it. We looked for a store where I could charge the respirator, and quickly drove into the North Park Coffee House. Sachiko found an outlet and plugged in the respirator battery. I breathed a sigh of relief. I was safe. I ordered a cup of coffee and relaxed, feeling powerful and unafraid of whatever challenges the future held for me.

I learned a lot from this trip. Try to rent dry gel cell batteries as they needn't be removed from the chair. Allow at least an hour to change planes. Carry a restraining belt for airport wheelchairs without belts. Disconnect the respirator battery when boarding or leaving the plane, and make sure the respirator is always charged. Last and most important: Don't let fear keep you from enjoying the richness and glory of this life.

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