John's kidneys are 40 times the size of normal kidneys and ech weigh 9kg.
John suffers with polycystic kidney disease (PKD) meaning that his kidneys are 40 times the normal size and each weigh 9kg. As a result, he has only 10% kidney function and is on dialysis. John has a machine, which he uses to dialyse at his home in Manchester. John is also a member of the Kidney Research UK Lay Advisory Commitee (LAC).
John says, “Having been told by my consultant some years ago that my future (with a capital F) lay in dialysis, I was dragged down a long dark corridor, kicking and screaming, by a nurse and shown two machines, one large, imposing and scary, the other somewhat smaller and looking much more user friendly.
The smaller one was described as “portable”, well if you had a native bearer and elephants it was portable, and could be taken on holiday. Holiday destinations were of course assumed to be within mainland Britain, however, as my family has a property in Spain, that was what sprung to my mind as a “proper” holiday destination!
Who could have foretold at that point that two years later I would be the first person from Salford to take a holiday abroad with a portable dialysis machine for company?
In the summer of 2015 I began training on the smaller machine, the Nx Stage version, in preparation for home dialysis. The training took place over a period of weeks but this timescale is obviously variable depending upon the aptitude, confidence and capabilities of the individual concerned.
My first home dialysis session took place on 3 August 2015, a somewhat nervous session admittedly, but with full support from the Home Dialysis team at the Hospital my confidence quickly grew and I was soon self-dialysing to suit my calendar and lifestyle.
Home dialysis became second nature to me, but it still was “home” dialysis. Psychologically I knew my next big step was to travel and the trigger for that came about following the death of the wife of a close friend and his comments that he wanted to take a break abroad in the early Spring of 2016.
A decision was made that 1 March 2016, five months after the funeral, would be the best date for him to take a break. That suited me as it was about this time each year that I would normally have visited the apartment in Spain to ready it for the family.In short, flights were booked, the Dialysis team was informed, and arrangements were put in place.
These arrangements are simple enough, but somewhat convoluted as there is a balancing act to be performed between the physical transport of the machine,(relatively simple) and the fluids and cartridges required, which have to be delivered separately to the destination.
We arrived in Spain with the machine and associated paraphernalia, the fluids had been delivered as arranged, and all was well with the world.I was aware that the staff back in Blighty had arranged with the local renal unit so that if there was a problem I could present there, very thoughtful of them but I am a home dialysis patient and will move heaven and earth to stay out of hospital!
The bottom line is that I was able, with a little help, to enjoy two weeks in the sun with very little inconvenience. That break did wonders for my well-being…. So much so that we arranged a return trip two months later.
John’s tips for travelling
- Forward planning is essential. The more notice your Dialysis team has, the better, but six weeks should be viewed as the minimum.
- You may require a couple of days extra training prior to your journey so make sure you discuss the timescale of this with your Dialysis team.
- The transit box for your machine will arrive about a week before you travel. The box is approximately two feet square and with the machine packed inside it weighs 44 kg (97lbs) which sensibly requires two people to lift it. So transport to the airport, or wherever, needs to be arranged, possibly along with assistance at your destination.
- The airline needs to be informed beforehand that you are carrying medical equipment but there is no facility to do this when booking online. Advise the airline at the earliest opportunity by phone or email.
- When we arrived at the airport, the ground staff denied all knowledge but as it is medical equipment, and clearly signed they have a legal obligation to carry it, and you should politely explain this obligation to them. The weight of the box exceeds standard airline acceptance weight, but again, this is essential medical equipment so they will deal with it for you.
- Be aware that at the destination airport it may well be that the box is delivered to a different carousel to other luggage due to its weight.
- Make sure that someone at your destination is available to receive the fluids the day before your arrival. They are bulky and take up a lot of space. We were lucky enough to have them delivered in batches to a local restaurant that was happy to take delivery on my behalf. Hotels should be equally obliging.
- During your dialysis, extra bags of fluid may need to be attached so make sure you have some assistance, as you will find this difficult to do by yourself.
Remember, it is your holiday and you should enjoy it. The more planning you put into the journey, the easier the whole holiday will be. But bear in mind that whilst the helpline for the Nx Stage is 24/7, you may have to be more independently pro-active with any minor problems that may occur during your treatment, possibly improvise, than if you were at home.
- Don’t forget to suspend the waste collection.
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