By Barbara Holden

People living with PH often have special travel considerations that require extra planning. The quickest route – flying – isn’t always an option. Sometimes the choice to not travel by airplane is made by recommendation of a patient’s doctor and other times it may be due to personal preferences. Planes and large airports can be difficult to navigate, for example, if someone uses a mobility scooter like I do. For long distances, driving can also be a challenge. Some people with chronic illness find long car rides especially exhausting, and making stops to take the time to get up and move around to prevent blood clots can add hours to the trip.

That’s why when my sister in Boston asked me to visit, I decided to make the journey by train. It turned out to be my great PH adventure!

Booking my train ticket was easier than expected. When I visited Amtrak’s website I noted that I was disabled. The next prompt allowed me to specify my level of disability (e.g. I can walk, I walk with a cane, I use a wheelchair).  I personally use a mobility scooter.  The system then determines if assistance is needed at the train station.  I requested the assistance, and it proved to be invaluable to me. The staff helped with my bags and made sure I got to the right location on the train platform so I could board the correct car.  They even helped push me and my scooter to my sister’s car when the batteries died.  I honestly don’t know what I would have done if I had to do all that all on my own.

The room I booked was a sleeper car with a private bathroom and shower. This is a more expensive option and something that must be specified when booking the ticket. When traveling with oxygen you must call Amtrak and let them know. The booking agent asked how many tanks I was bringing and noted that I was renting a portable oxygen concentrator (POC) machine in my reservation.  The booking agent made sure a special service team member from their Red Cap program was waiting for me at each location. The Red Caps help people with disabilities, senior citizens, large groups and offer general assistance.

With a long journey ahead of me, I also needed to plan my meals. Passengers can bring their own meals and snacks on the train, but it must be eaten in the cabin or seat (depending on which you purchase).  My train had a dining car.  Because I selected a cabin that was large enough for my mobility scooter my experience was essentially the same as going first class, so my meals were included.  You can go to the dining car or have the attendant bring you whatever you choose from the menu to your cabin. The meals also included water, soda and dessert.  The food items ranged from hot breakfast, to burgers and surf and turf.  Also, there is a cafe car which has snack type foods.

The biggest hiccup of my adventure was not knowing and not being told by my oxygen provider that although the train does have electricity it doesn’t produce enough electricity to give me oxygen AND charge the batteries on the POC machine that I had rented.  I ordered two extra batteries and it was a good thing that I did. Had I not planned for this, I more than likely would have had a medical emergency because I would have run out of battery power.  During the trip the train also makes several stops.  At some stops the train shuts down and doesn’t produce enough electricity to operate the POC, so I would have to switch over to battery power.  I am on 6 liters and the batteries don’t last very long on this volume.  When I contacted my oxygen provider from the train to ask why the batteries weren’t charging it was then that they told me about the train not providing enough power to do both.  When ordering the POC machine I told them I was traveling by train, so I was a little frustrated that they did not warn me about this potential issue in advance.

When I reached my destination, I called my oxygen provider and asked them about a desk top charger so that the batteries could be charged by a different device.  I was told they don’t have them, but persisted in advocating for myself. I asked that the please check the inventory again and was told that they do have them, but don’t make this widely known. I would think that they would tell their patient about it so all potential issues can be addressed before leaving home.

Also, my advice for those traveling with a mobility scooter would be to bring it in for maintenance prior to a big trip. Don’t assume everything is ok.  I didn’t think about it and I should have because my batteries died and I had to find a place away far away from home to fix the problem.

I kept all of my bags with me on the train in my cabin.  You can check them so you have more room, however all I traveled with was my carry-on bag, an overnight bag, the POC Machine and my scooter.

The train ride from Orlando to Penn Station in New York was 21 1/2 hours. The train from Penn Station to Boston was 4 1/2 hours. I traveled more than 1,200 miles to my destination, and I would absolutely do it again. Although it took much longer to get there than it would be to fly, for me, it was a much better option than driving.  I was a little tired from the train rocking back and forth and the noise. Between that and worrying about my oxygen situation I didn’t sleep much. However, I wasn’t as tired as I would have been by driving.  Plus, I could get up and walk around therefore helping to prevent blood clots.  In a car, you can’t do that or you’ll never get there.  LOL!!!

I will also say this.  While on vacation, even if you feel good and rested, don’t try to pack too much in.  Rest!  I didn’t do that and I became very sick when I got back because I was worn down from the trip. All in all, my sister and I had a wonderful visit. Now that I know what to expect when traveling by train, I may just plan another trip soon!


Barbara Holden poses next to an ad featuring PHA celebrity champion Traci Braxton. These ads were targeted towards commuters along Amtrak’s Northeast corridor.

This post is part of PHA’s The Right Heart blog series. Find out how you can share your story. Click here.