I dialysed on the NxStage portable dialysis machine!

I went to the US for a month-long holiday recently. Satellite Healthcare (now merged with US Renal Care) was kind enough to agree to train me on the machine and enable me to travel with it. Training on this machine typically takes six weeks. However, since I was already dialysing at home in India, albeit with the help of a tech, they estimated it would take about two weeks. That I was doing cannulation helped reduce the training time significantly. Eventually, I finished the training in a week!

Here are a few thoughts about the whole experience.

Ease of use

The NxStage System One is very simple to use. The dialyser and the blood and dialysate lines all come pre-attached as one single cartridge. You simply insert the cartridge into the machine. The machine does not require a water treatment plant or even a tap with running water. You need to hang fluid bags that contain the dialysate, which are connected to the cartridge and the dialysate flows from there. The setup takes about an hour but if you follow the instructions carefully, it is a breeze. Thankfully, the nurse who trained me gave me a very easy to follow set of handwritten instructions which made it very easy for me to do everything.

Traveling with the machine

The best part about this machine is that you can travel with it. It is portable. It is about the size of a desktop printer. It comes with a case for flights that you put the machine in and the case has to be checked in and cannot be carried as cabin/carry-on baggage. The case with the machine weighs 99 pounds. So it was not something that I could carry myself. I needed help at the airports to get it on the trolley and to get it into the cab.

US regulations require airlines to allow passengers who are on dialysis to check-in the dialysis machine along with the consumables it needs free of charge. However, most of the time, the airline official at the check-in counter did not know about this regulation and I had to show them the printed copy of the regulation to be allowed to check this in. They would need to always get the authorisation to waive off the charge from their superior. So I made sure I got to the airport significantly early to allow for this delay. It also helps to call the Disability Desk of the airline in advance and have them make a note on your reservation that you will be carrying this machine and that they need to not charge for it.

Hotels

I had the dialysate bags shipped to the hotel a day or two before I was scheduled to reach. NxStage and US Renal Care did a wonderful job with this. This saved us the hassle of having to lug 30 kgs of fluid for each treatment during our trip. While the hotels often messed up and the boxes were kept in a place that they were not supposed to resulting in them telling you when you arrived that they have not received the boxes, if you persist and make them search a little, they will eventually find it! I had this problem in two of the four hotels I stayed in. Again, always better to call them in advance and let them know the boxes would be coming and call after the boxes are supposed to have been delivered.

When there is trouble

The machine works very well and is trouble-free for the most part. However, a couple of times during the sessions on my trip, I ran into some minor problems. The NxStage Customer Service is absolutely brilliant. They know their stuff really well. They guided me on what to do and in a matter of a minute had me back on track. This can be such a blessing when you are in a remote location with no assistance at hand!

What would I do differently?

If I were to plan another trip to the US while using the NxStage, one thing I would do differently would be to not do so many places. I had probably overestimated the ease of traveling. Apart from the problems with checking-in the machine while flying, every time we went to a new place, I would have to disassemble the machine before we left and then assemble it back when we reached. While it is not too much of a hassle, it can be a little irritating to have to do this 4-5 times in a month. So, next time, I will probably pick one place and stay there for a longer duration.

Summary

I had the most fantastic trip ever, thanks to the NxStage machine and Satellite / US Renal Care. I was able to spend two weeks in Los Angeles with my brother, Karan and his wife, Myra. The five of us (my parents, Karan, Myra and I) were able to spend a week in Yellowstone and Grand Teton National Parks. I was also able to attend the aHUS Community Advisory Board meetings in Orlando. I am really grateful for being able to do all this.

Here are some pictures from the trip: