Hello, I’m Emma and I’ve been on parenteral nutrition (PN) since January of this year. During the previous six months I was making daily trips to the hospital for IV infusions of phosphate, magnesium and saline (among others) through my PICC line.
In January, my team and I decided I needed to go on full parenteral nutrition. I was admitted into hospital so my PICC line could be replaced with a tunnelled line (also sometimes known as a Hickman line).
Eventually I was assigned BBraun as my homecare company. They provide all the equipment, medication and feed, and the best bit is I can do it all at home.
A couple of months later my husband and I were invited to a wedding in Northamptonshire, taking place at the beginning of June 2022. We live in Norwich so we decided we would stay over for the wedding and make a little holiday out of the extra days.
I hadn’t been away before with all my PN equipment, so we decided to have a trial run – staying at my in-laws in Lowestoft. We knew that if there was a problem, or if I had forgotten something, we could go back home easily enough.
We bought a camping/travel fridge, which holds a lot of the PN bags. The fridge was kept running in the car by plugging it into the cigarette lighter, and once at the house it plugged into the mains power. The fridge had its own LED temperature display and controls, so this could be set to keep in range, and we also had the thermometer that was provided by BBraun to use . The trial run went well. We were all set for the wedding and looking forward to it.
The month of June came. For our time away we got a medical cool box from BBraun to transport the PN in while we travelled to the Airbnb we were staying at. We wanted to transport it safely. If we wanted to stop or take a break while travelling, we knew the temperature was stable in the cold-chain boxes. We didn’t want to worry about the fridge temperature rising above the correct temperature due to having the car engine turned off and not powering the travel fridge.
We soon realised, however, that the one cool box provided wouldn’t hold all the PN we needed to take, so we decided to get a rechargeable battery power block to plug into the fridge while the engine was off. As we were keen to start travelling, we were determined to ensure we do it safely and find our own way to make it possible when transporting compounded PN. We had lots of advice, which helped us find what worked for us.
We arrived at our Airbnb without any problems and the wedding was great. We were so pleased we had made the journey and hope it’s the first of many. On the last day we decided to go to Shepreth Wildlife Park on the way home. Due to worrying about the PN in the fridge again (buffer/spare bags), I decided I would run one bag of PN during the day instead of night. This meant there would only be one bag in the fridge if something went wrong and we had to discard it.
The good news is nothing went wrong! We had the fridge plugged into the car cigarette lighter whilst traveling home, and when we stopped at Shepreth we ran the fridge off the battery power block. It was a hot day, but the fridge kept its temperature the whole time we were going around the wildlife park.
Overall, a good travel experience, even if it did look like I was moving into the Airbnb with all my equipment and luggage!
Anyone considering travelling with their PN should seriously consider it. Take it at your own pace, start locally to gain confidence if you wish, then go further afield. For me the practice run allowed me to think about what I needed to take and what to take in case I had a problem, but the main thing to remember is that having PN should not stop anyone enjoying travel, especially if it means attending special occasions and making special memories.