This summer I rather optimistically planned two holidays- the first a week in Devon with all of Hubby's family and the second a week in Germany visiting friends. I was obviously too greedy because on Monday (just 3 days before I was due fly to Germany) I was admitted to hospital with a suspected infection in my Hickman line. I know I should be grateful that I managed to have the week in Devon but going to Germany was a big thing. It was going to be the first time I had flown since having a Hickman line and it's taken endless emails and hours of telephone calls with the airline and my healthcare team to organise. You see going abroad isn't just a case of taking a bit of extra medication in the suitcase...the feed I have through my Hickman line has to be refrigerated so travelling with it is always problematic.
When we went to Devon I froze a million ice blocks and put them in the cool bags with the feed and then put the feed in the fridge at the other end straight away. We stayed in a caravan in Woolacombe and arranged with the site for an extra fridge to be put in the van. It took up part of the living room but that didn't matter.
Traveling by car meant I could take all the other items needed to hook up (the wipes, sterile paper towels, flushes, connecting sets, gloves, hand wash, alcohol gel etc) including extras for that 'just incase' moment and spare bags of saline incase I got dehydrated. But when you fly you don't have that luxury. I would need to take at least six 2 litre feed bags, each weighing 2kg, and all the extra bits mentioned earlier so if all that went in my case it was practically all my luggage allowance gone without packing a single item of clothing!
Wondering how other people on TPN flew and went on holiday I got in touch with PINNT who have a helpful holiday section plus lots of chat threads from other members asking questions and offering advice.
http://pinnt.com/
From there I learnt that the airline should check all my medical items into the hold for free. I got in touch with Eurowings who we were flying with before I booked the tickets to check that this would be the case and they confirmed it would be. I just needed to get back in touch once I had booked the tickets. Sounds easy. Wrong! I tried calling them but their customer service number is 10p per minute and typically I was on hold for 20 minutes before speaking to anyone. After a few attempts I managed to speak to a real life person who told me I needed to email them with the details of the medication and a photo of the fluid bags. I did that but got an automated reply saying that they aim to answer all email enquiries within 3 weeks!! After two weeks I emailed again but I started worrying that I would turn up at the airport and them refuse to take all my medications or make me pay a baggage charge so I decided to try ringing again. When I got through I was told that there were notes on their system with details of my medication and they confirmed that it could be checked in for free. I got an email confirming it as I wanted something in writing as a guarantee. So I was all set with the airline.
I had numerous conversations with my healthcare team who provide the feed bags and worked out a plan of how to get the feed to Germany still cold. They package it in special polystyrene boxes with huge ice packs that have been tested to keep the feed at the right temperature for 20 hours. I would get it delivered to the house the morning of the flight all packaged up and check it into the hold with our luggage. I could have had it delivered to the airport but I wanted to have it in the car and know that when we set off for the airport that I had everything I needed and wasn't worrying about meeting up with the delivery driver at Stansted. But all that planning turned out to be fruitless anyway.
I had ten days between Devon and Germany and worked like a Trojan to get the clothes unpacked, washed and ironed ready to be repacked again. However last Thursday I woke up and didn't feel right. A friend had come up to visit and we had done the sights of Nottingham the day before so I wondered if I had overdone it. I spent the day on the sofa but instead of feeling better I felt worse. I spent Friday in bed and despite having one of Big Girls friends and her Mum come to visit over the weekend I couldn't get myself out of bed. I felt terrible that I had guests and couldn't do anything with them but it took all my energy just going to the loo or turning over in bed. With the trip to Germany looming I thought that if I rested then I would get over whatever bug I had got but in the back of my mind I was starting to panic. What if it was a line infection? All the symptoms were there- the body aches, the severe fatigue but I didn't have a temperature and I felt better when I was hooked up. In the past when I've had line infections when I've started my feed my temperature has rocketed and I've had the rigors (uncontrollable shakes and teeth chattering) but I had none of that. Maybe it wasn't a line infection?
When I woke up on Monday morning I still felt really ill so I rang and got an appointment with the GP but it wasn't until 5.40pm. Another full day spent in bed followed and I went to the doctors surgery in my pjs. I didn't have the energy to get dressed and must have looked a right sight! The GP took one look at me and told my Dad to take me straight to hospital. I could barely stand so went and laid down in another room while he called ahead and wrote a letter for me to take with me.
By the time Dad had got me home Hubby had a bag packed with hospital essentials- he's done it so often now he knows exactly what I need. Hubby took me to hospital and Dad took the kids back to his house. And that's where I am. In hospital waiting to find out if I have a line infection or have just been taken out by a virus or flu bug. Sometimes life just isn't fair.
NB x
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