We never said this would be a simple process. Since we started traveling, two years before this project and soon after starting treatments, we noticed something was missing: information!
This became one of our missions with the all aboard project: What can a dialysis Patient do when travelling? What type of hemodialysis will I find, and what do I needto travel?
First of all, let me explain why I chose not to do peritoneal haemodialysis: the main reason is that I would have to turn my house into a hospital. I, for one, want everything to be in its place and home is the place where I can rest and enjoy my family. I don’t want Guilherme to grow up watching his father plugged to a machine, I don’t feel it’s necessary. The second reason is the treatment´s frequency. If every other day is already hard on me, having to perform treatments on a daily basis didn’t seem to be the best option for my lifestyle. The third reason is related with the fact that I love surfing and it would scare me to dress and undress my wet-suit with an “open wound”. I know it’s possible, and maybe it’s just in my head, but Irather play it safe. For each it’s own. I have nothing against PD – much on the contrary, I believe in freedom of option between every treatment modalities – but in my case, it wasn’t the choice.
Now about the booking process: Dialysis clinics havenurses and/or social workers who will give support when it comes to planning a holiday, but things are far from perfect. Not because of the professionals themselves or because of the dialysis service providers, but simply because a simple fact: As patients don’t travel often, information on the matter is scarce. When patients go to clinic which is different from where they usually get their treatment, there is no network in which people can share their experiences. This was my biggest fear when I realized I was going to start hemodialysis: “I will never be able to travel again.” There was no information! Not in national (Portuguese) or in international websites. The information available was scarce and explained almost nothing about how I could travel with this condition.
Meanwhile I understood that my not being able to travelwasn’t true! I could continue to travel. The process by which I could, though, took some time to clarify itself in my mind! One of Diaverum’s mottos (the company that accompanies me since my first day of treatment), is that we should be more a person and less a Patient. Have you ever thought about this in that way?
Now let’s go through it step by step:
1 – Before deciding on where I want to go, I have to check if there are clinics or not, in my destination. Choosing thedestination and checking if treatments are available there, ends up being two parallel searches. With our trip around the world, I’ve been able to unlock this process a little bit and, fortunately, there are more places where we can go than I thought in the beginning;
2 – After checking the treatments, I have to check how farwhere we’d like to stay is from the clinic. We don´t like to stay one hour away from a clinic. I would say that 30 minutes is the maximum acceptable for me. At the most! At this stage I ask the nurses or social workers for support on finding a clinic and getting in touch directly with them.
3 – Once the destination and the clinic are chosen, it’s time to book everything. I’ve asked nurses and social workersfor their support during this stage and I’ve also done it myself. We have to inform them when we are planning to go and which shift we prefer. We can’t always be assigned to the shift we want, but, in general, they try to meet what we ask for.
4 – Sending the documents (by the clinic’s nurse or social worker or by myself): Then comes the time to send every document to the destination clinic – lab results, HIV and Hepatitis test results, amongst others. The tests and documents needed vary from country to country as well as from clinic to clinic.
5 – Once everything is booked, documents sent and treatments confirmed, we just need to go! If you’re travelling outside of Europe, where there’s no European Health Insurance Card, you have to pay for hemodialysis, so you should always ask about the costs before you go. Usually treatments are around 250€. There are some countries where it’s 70€ per session (India) and others where it’s 550€ per session (USA).
The most challenging step to work out with the nurses or social workers is that they normally only contact the clinics after you book the trip. So we only know how much the treatments will cost (outside Europe) after we’vebooked the trip and we can’t change our minds. What I’ve done was to contact the clinics where I wanted to do my treatments directly, ask for the information I needed and, afterwards, I asked the social worker for help… This way I already knew the costs and if I could afford them or not! This may be a useful insider tip!
You can get some information from booknowmed and globaldialysis (and now, from our blog).
As for treatment quality, I’ll write a post about each country so that you know how it went…