Has anyone traveled on a train with their NxStage? I am having issues with Amtrak because they say they don’t carry anything over 50 lbs.
I am on the phone with them right now and haven’t been able to check to see if there is a CFR or some other guideline that requires them to transport it.
I know about the airline travel page. I specifically am looking for information on train travel. The homedialysis travel page is only for airline travel.
The situation is I am scheduled to travel on Amtrak tomorrow. Being, the organized individual I am, I always call ahead to make sure they are aware I am traveling with my machine, and to arrange any type of assistance I can.
When I called Amtrak, I repeatedly was told that their baggage limit was 50lbs, and my “life saving equipment” had to be under their weight limit. It was not the size that was the problem, but the weight!
I called Amtrak customer service three times, and was told by the representatives that answered, the same, that I couldn’t transport my machine. Two of the three representatives put me on hold for really long periods of time, and then said their supervisor said that it couldn’t be transported.
I called the regional NxStage representative, the NxStage customer service, and the Federal Railroad Administration Office of Civil Rights.
The FRA office of Civil Rights made a few phone calls to a contact at Amtrak in DC, and there is supposed to be someone calling me with instructions. It is now 5:15 pm eastern and I haven’t heard from anyone. I hope they call before tomorrow morning.
I am going to show up at the train station two hours early, armed with all of my ADA documentation and insist that I get on that train.
I dread to think what I would have gone through if I decided to take the bus.
Hi Folks
Hi Headbandgrrl
Your post comes at very good time. I had just posted on another thread about is there a message board for people with disabilitys. I wanted to find out just how disable people (not just dialysis) go about day to day life. There are people who are working just as hard to take away rights, as people working hard for the disable.
How much time did you have in advance of train trip? Can you drive, if so why not rent a car?(if you don’t have one?) Have you been on the trains before and don’t trains have baggage cars? We (wife and me) had looked into a trip to the west coast. We looked at air (I won’t fly), bus(greyhound) and train. I would have l’ll loved to take a train or bus but the cost was just out of range.
I wish best to you. And if you can post and lets us know how things work out.
[QUOTE=Headbandgrrl;16770]I know about the airline travel page. I specifically am looking for information on train travel. The homedialysis travel page is only for airline travel.
The situation is I am scheduled to travel on Amtrak tomorrow. Being, the organized individual I am, I always call ahead to make sure they are aware I am traveling with my machine, and to arrange any type of assistance I can.
When I called Amtrak, I repeatedly was told that their baggage limit was 50lbs, and my “life saving equipment” had to be under their weight limit. It was not the size that was the problem, but the weight!
I called Amtrak customer service three times, and was told by the representatives that answered, the same, that I couldn’t transport my machine. Two of the three representatives put me on hold for really long periods of time, and then said their supervisor said that it couldn’t be transported.
I called the regional NxStage representative, the NxStage customer service, and the Federal Railroad Administration Office of Civil Rights.
The FRA office of Civil Rights made a few phone calls to a contact at Amtrak in DC, and there is supposed to be someone calling me with instructions. It is now 5:15 pm eastern and I haven’t heard from anyone. I hope they call before tomorrow morning.
I am going to show up at the train station two hours early, armed with all of my ADA documentation and insist that I get on that train.
I dread to think what I would have gone through if I decided to take the bus.[/QUOTE]
Thanks
Bob O’Brien
Hi Headbandgrrl,
Oh my gosh, we truly hadn’t thought about trains, and I’m afraid we’re not familiar with their policies. Since they don’t need to lift off, I can’t imagine why they feel a need to restrict life-saving equipment to 50 lbs. (It’s not as if you had a choice in the NxStage System One’s weight).
Besides getting to the train station early, you might also arm yourself with contact information for your local TV station, just in case…
If Amtrak’s policy is they don’t accept any luggage over 50 lbs then it would not be discrimatory to not accept the machine. If they allow extra weight and charge for baggage over 50 lbs then they must accept the machine without additional cost.
If there policy is they don’t accept any bags over 50 lbs that may not be an ADA issue.
50 lbs is not a lot, I think my suitcase weighs almost 50 lbs empty!
Good Luck!
Follow up to my original post.
Well, I made it on the train and had a lovely ride to beautiful Upstate NY at the peak of the leaf turning season. After I posted here, I called Amtrak’s customer service three times, and received no assistance at all. Do not be fooled by their Disability Coordinator office listed on the website. The number they provide is the toll free general customer service number. I asked the representative for a Disability Coordinator and they all said they WERE the Disability Coordinators.
To make a really long story short, I called the DOT, who called Amtrak in Washington DC, who called the local Amtrak office and a very nice and information Amtrak staffer called me that evening to tell me I wouldn’t have an issue transporting it on the train.
Yes, Amtrak’s normal weight limit is 50 lbs., however they CAN transport medical equipment over 50 lbs. Especially live saving/supporting equipment.
The red caps all told me that they are able to help travelers with their machine, and that the customer service agents are not as knowledgeable as they need to be.
So, one more question to my peers. Anyone try to transport their machine on Greyhound? LOL.
Good for you for calling the DOT, Headbandgrrl–that was a great idea, and it obviously did the trick for you! I’m so glad you had a nice trip. 
I’ve traveled on Greyhound and I would not even consider trusting them with an 18,000 dollar dialysis machine. On a trip from Indiana to Saskatchewan (Canada), which was about 2000km, I had to have special assistance tags on my baggage because I have a sight problem (this was before I started dialysis), and the dimwit baggage handlers would not acknowledge my claim tags, leaving me to lug two suitcases, a case with my disassembled bicycle in it, and a guitar case through unfamiliar stations where I had some trouble seeing the correct gate numbers for my next bus. Plus they would literally throw the bags, no matter what was inside them, into the baggage compartment on the bus. If I attempted to travel on Greyhound with a dialysis machine, I would expect to get to my destination and find broken dialysis machine pieces falling out of the carrying case. Puke!