This is the full article on the subject of holiday dialysis which is featured in the Spring 2019 issue of the WLKPA Newsletter.
Our very own Ray of sunshine!
You may have observed from the abundance of holiday commercials that we see every day, that many people are busy at this time of year planning their summer getaways to sunnier warmer climes. Just because we are renal patients, doesn’t mean that we should miss out on holidays with family, friends or even go on our own solo adventures. While it is very important to consider our health and any treatment that we may require, for some this is just another aspect of holiday planning just like making sure that passports and tickets are valid.
Meet Ray Ellis for example. Ray was on dialysis at Northwick Park Hospital for five years until he received his transplant in April 2018.
Former London Underground Area Manager, Ray is a proud father and grand father who loves his holidays. In fact Ray likes to get away with his family whenever he gets the opportunity. We met up with him and asked him if he has any words of advice for other renal patients wishing to plan their holidays…
So Ray, how long were you on dialysis?
“I was on dialysis for five years. I started in 2013.”
You enjoyed your holidays before starting dialysis. How did going on dialysis affect your holiday decision making?
“Before I started dialysis, my wife and I visited Egypt, Tunisia, Gran Canaria… those kind of places. Back then, I could tolerate 50 degree weather conditions but now I need to be careful. It didn’t matter how sick I felt. I was determined to continue to enjoy my holidays. It wasn’t fair on my wife not to go on holiday. “
So how did you go about arranging your holidays?
“I started to ask around to see what others were doing. I couldn’t find anyone going on regular holidays. Some patients were visiting the St Annes Holiday Dialysis Centre in Hampshire while other patients were mainly going to India every couple of years to meet family. I wanted to go on proper holidays and sit by the beach. I went to the travel agent and asked about holiday dialysis. He was very surprised as he had never had an enquiry like this before. He knew that dialysis patients were going on holidays and offered to do some research. He found a company called Freedom Travel.
I contacted them and asked them how to go about arranging dialysis abroad? They said to:
Choose a number of hotels at my destination and make enquiries about whether or not they provide dialysis.
Find a hospital that is nearest to where you intend to stay.
You don’t want to be traveling for many miles and several hours three times a week to get dialysis. You’re supposed to be on holiday after all! I would suggest a maximum driving time of half an hour should be fine. This is because, the local patients will usually get priority so you’re not always guaranteed which shift you will get. This is also true for holidaying in the UK! I went to Brighton recently and was only offered the twilight shift. So abroad, tourists will invariably get the ‘twilight shift.’ This is why I would also advise to book months in advance and to also keep asking if there is a more suitable shift for you. Sometimes they might have a cancellation and give you a preferable dialysis time. Basically, there are no guarantees!
Initially, my phone bills were sky-high due to the language barrier. Once I was there, I could ask doctors and other staff for their direct telephone numbers and email addresses. So, it was hard work at first but ultimately rewarding. If you don't fancy doing all this phone calling around, the travel agent can do this but they will charge a premium to do this on your behalf.
The first holiday we went on was to Spain. For the first two holidays, I had a Tesio line. I was told that most patients used a fistula. Our first experience was a bit daunting as we didn’t speak the language and had a lot of communication issues. Simple things like asking for a blanket was difficult. I was offered a good meal though which was nice. There was a TV above my bed but I had no option but to watch the local language programs even though the staff knew I wasn’t Spanish. I had my pre-charged ipod so it wasn’t all bad. They didn’t allow me to plug anything in to the mains. My wife accompanied me on the first session but was abruptly ordered to go back to the hotel. I learned afterwards that it was their policy not to allow visitors in order to avoid infection. So my wife stayed at the hotel from then on, for further dialysis sessions.”
What else should patients be aware of?
“Well, all of the machines are different to what we are used to here, so don’t be tempted to touch any buttons when the machines alarms. Cleanliness and hygiene can also be hit and miss. On subsequent holidays, I took cleaning equipment with me from my hospital back home which I had packed in my luggage. I insisted they use the cleaning equipment I had brought to clean my machine whenever I went there for dialysis. It took them a while to understand that I wanted the same treatment as the locals but as I became a regular visitor, things did improve over time.”
Did you carry an EHIC card with you?
“I strongly urge anyone to get an EHIC card before they travel to some European countries. The first thing they asked me for when I arrived for dialysis was my EHIC card. This card entitles you to state-provided medical treatment. This must be taken out in addition to your regular holiday insurance. Who knows how things will change after Brexit?” Always check with your renal team that you are well enough to travel and get a Holiday Letter before booking your holiday.
How do you get an EHIC card?
You just go on the government website and type EHIC card. You fill in the form and it comes through the post in about a week. You don't need to send them a photo. I'm surprised that so many people still don't know what an EHIC card is. Check the official government website for updates on the impact of Brexit on EHIC card holders. I think you need to have booked a package holiday to use the EHIC card so you're covered with ABTA or ATOL but please check before you book!
What were the other differences?
I did notice that there was always a doctor on duty there throughout the day. They would be there from 7am to midnight and therefore had the time to visit each patient and engage with them all.
Also, some hotels provide a coach or bus to transport dialysis patients to and from the dialysis unit but in instances where this isn't available, I would definitely recommend taking a cab. Always set aside a budget of say, £100 for taxi rides to and from the dialysis unit. I found that my taxi rides cost me around 15 Euros each way.
Where else have you been on holiday?
Spain has always been one of my favourite destinations but I have also been to Madeira. I would definitely recommend Spain and Madeira. My advice would be to travel to countries that are a few hours away by plane just in case you have to return home unexpectedly. Having said that, I know other patients that have gone to India too.
Later this summer I'm planning on going to Crete but as I've had a transplant now, I'm looking forward to my first dialysis-free holiday! I'll only need to be careful of spending too long in the sun. You have to make adjustments. I always either pack or buy a wide brimmed hat when I go on holiday. The wider the better. I don't care if I look silly or what people say, I need to look after my kidney. I shall also be packing and slapping on a lot of sun cream.
How do other patients react when you tell them you're going on holiday?
Well, other patients noticed that I go away a lot and have asked me for holiday advice. So I'm glad I'm inspiring others kidney patients to enjoy a holiday while on dialysis.
When you finish your holiday, do they give you a report?
Yes, I was given a thorough report to give to my dialysis unit back home. This detailed how well I dialysed while on holiday, my observations, issues with my blood, heart, this and that etc. However!… my first report was in Spanish! So I asked them what it said, I couldn't read it? They were surprised at this oversight. The doctor seemed surprised that I wanted to read the report however, after a couple of days, I was presented with a translated copy in English. However, I felt like I was a trailblazer in this respect. When other patients noticed that I was asking for certain things, they also began to make similar requests. On subsequent holidays, I was always given the report in English as I had set this precedent.
What did you do about travel insurance?
Insurance is a crucial part of holiday planning. You need to have it, make no mistake. Don't go on holiday without travel insurance. Tell the insurance company that you are on dialysis and/or you have a fistula – the premium will go up. They will tell you what they won't cover etc. These days most people have high blood pressure and cholesterol so stuff like that is often covered. I use All Clear Travel or Avanti travel insurance. I've used Insure & Go but they're a bit expensive in my experience. With most travel insurance companies, if you tell them you have high blood pressure, cholesterol, hernia… nothing. The moment you disclose dialysis, Whoosh! Then the agent says they have to go to another page. That's when you know it's going to cost at least an extra £200. I've had to pay between £300-£400 extra for insurance. £450 on one occasion. However the other day, I was looking for insurance and I got quotes for £59 because I'm not on dialysis anymore. I stated that I had had a transplant too. For some reason the word dialysis prolongs the application process. PLEASE PLEASE do get travel insurance! It's worth it if you fall sick and have to be returned home in an emergency. That way, you'll be covered for up to £10 million or whatever your policy says. That will pay for a private plane to get you home. They will send you back home without insurance, but you will have to pay, I'm guessing £10000! Insurance will get you peace of mind. The one time you don't have it, you may end up needing it.
How about medication? What happens with your meds?
This is very important. You've got to take your medication with you. Tell your dialysis unit that you're planning a holiday in, say July, you will be given enough needles, a letter explaining who you are and what you will be carrying with you. You show the travel agent, the airline or other authorities. Once you show the airline, they will tell you where to put the needles etc. You carry them in your hand baggage. If you happen to break the needles, you're stuffed! The needles they use abroad are different to the ones they use here. Your dialysis unit will give you enough EPO and you must remember to put them in the fridge when you get to your hotel room. You must always tell officials that you're carrying needles. They will want to know why and you just show them your letter. I always carry my pills and tablets with me in case my luggage gets damaged (which has happened).
All in all, I've enjoyed my holidays… I remember on my first dialysis holiday (I had a Tesio line) and I was sat in the sea one day and all of a sudden, from the corner of my eye I saw a massive wave coming my way. I panicked! As soon as it hit me, I jumped out of the water! When I returned home, my priority was to get a fistula. An appointment was made very soon after that. With a fistula, I was very happy to enter the water on subsequent holidays. With a Tesio line you HAVE to be careful not to get it wet otherwise you may find yourself on the first plane back home! I did have those Tegaderm dressings to help keep the line dry but I normally wore a vest or tshirt to conceal the patch. It wasn't very nice being the only person in the water wearing a tshirt!
What about patients going on longer haul destinations?
Well, the EHIC card is only accepted in some European countries. If you're travelling elsewhere, say Jamaica, then you will have to arrange private treatment because they will only treat their own citizens. Find out if the UK government has any deals in place with your holiday destination country. Florida – America is another destination where you'll have to pay for treatment. Australia and New Zealand though, I think dialysis treatment may be free in one or the other country, but please check with the uk government website.
If there is anyone reading this article and they have further questions, how can they get in touch with you?
I would encourage everyone to go on holiday if they can. I'm happy to help and offer my own, personal advice to any other kidney patient who wants to enjoy holidays while on dialysis treatment. They can contact me by email at firstname.lastname@example.org
This article has been paraphrased from the original recording in good faith. All information presented is to be considered as a guide and is based upon the experiences of Ray himself. WLKPA doesn't provide any guarantees to the accuracy of any statements made. Readers must conduct their own research when planning holidays.