I am discouraged. I have always wanted to bring our son to Europe and eagerly began the plans to go there this summer. Then I discovered I can’t dialyze there because I’d have to ship all the supplies myself for an exhorbitant price. Then I realized we can’t even return to Hawaii for the same reason. I feel trapped to live out my life within the US borders. My son needs exposure to other cultures. I also want to travel outside our borders.
The only options I have found by reading this site is to pay cash for international in-center dialysis which is out of the question.
Why can’t we get supplies shipped in Europe from within Europe instead of trying to ship from here? I’d be willing to go to the UK only if that’s where nxtage is now.
Has anyone brought their own nxstage and supplies to Europe from the US? I have to figure this out somehow.
As far as I know 1 unit is using the NX stage , brought in by Dr Greenwood at the Lister hospital. NXstage distribution in the UK is handled by Kimal, but hasn’t moved out of the country yet (although they have plans to move into Europe soon. Airlines certainly shouldn’t be charging for the cost of shipping medical equipment. In the UK that comes under the discrimination laws, and airlines doing so could technically be taken to court.
I’ll see if I have any KIMAL contacts from the NKF conference I attended, and will let you know.
I’d like to add I share your frustration, I have a close friend living in Maine, USA, my option to see her will involve me arranging dialysis in Waterville, or paying for her flight to the UK. (She’s terrified of flying). The latter would be the easy option for me. Indeed if I need to travel anywhere outside the EU, I have to pay for treatment, AND we are only given 2 weeks ‘reciprocal’ treatment. Less than the average holiday if you work. Somewhat unfair.
There has been some talk of a ‘dialysis swap’ in the UK, I’m not sure how that would work at a further distance, or what the infection control probability would be etc.
Don’t give up… We all live on the same planet after all:)
Thanks for the reply. I’m from New England and used to ski at Waterville Valley Ski Area once in a while. Beautiful area. I hope you can work it out. Not sure what ‘reciprocal’ dialysis means but I hope it works out. If you do home dialysis, you’d think you could get the supplies from someone in Maine instead of carrying them all the way from EU. Sometimes things don’t make a lot of sense, do they.
Yes, if you do have some contacts from Kimal, that would be awsome. If not, I appreciate the thought!!
take good care.
There is hope, believe it or not. Before you know it, the very small dialysis machines will be on the market. I have talked with some of the small dialysis machine companies, it will not be much longer. You will be able to put the dialysis machine in your backpack. I promised that I would not reveal any information. However, you can have faith that the best is yet to come, a bright new day is coming soon to dialysis, within about a year.
Mark has a point, there is now competition to the NXstage. However, it may be a while before the other machines come onto the market mainstream. I don’t have an NXstage yet, but will be off sometime this year, with my consultant to speak with the doctor in England thats started using them.
The reciprocal agreement within the European Union countries, means I can dialyse for free in any of the member countries, but outside the EU, I have to pay. The unit I travel to in effect sends the bill to my unit who pays the cost. I still have to pay for the travel, hotel, travel insurance etc of course.
I can get ‘free’ treatment in the countries listed here. http://www.kidney.org.uk/holidays/tips.html#ehic with an European Health Insurance Card.
I went to Tenerfie for 2 weeks on Holiday in 2009, Crete the previous year, and have been to Majorca, Menorca. It’s actually easier to go on holiday outside the UK and dialyse then it is for me to visit my brother in Manchester (England) for 2 weeks. Go figure. However most units are now cottoning on to the fact that they NEED to provide holiday spaces, as well as places for weddings, funerals, and so on.
I dialysed for a year or so in Preston (UK) when I was studying there.
The new technology should be on the market by the end of 2010.
Mark, you talking about the Quanta,?? Or Baxters new toy… lol WHERE it comes onto the market and how available is another question. A lot over here will depend on the hospital trust having a proactive home heamo program. Then there’s the belt machine Mark 2 should should I’d guess be in the works… We live in exciting times, and hopefully we’ll live long enough to enjoy the excitement
Wendy, will PM you KIMAL’s customer support details for the UK.
If they can make laptops smaller and cellphones, like the iPhone, with so many gadgets on it; you’d think they’d be able to make smaller and more portable machines. I think the more we continue to ask and push for smaller and better machines, the quicker they will come. The demand is obviously there as one can see from this thread, now it’s just a matter of time before someone offers them.
Possibly the closest yet to that is the wearable ‘belt machine’ trialed in the UK… They are working on making it ergonomic, but it did give effective treatment:)
Wendy one option we kicked around on the Freedom cruise was to take a cross-Atlantic cruise leaving from the US. You could load three or four weeks of dialysate and cartridges on the ship and off load the remaining when you arrive in Europe.
I hear that right now even the NxStage UK trial isn’t using bags, just the pureflow. Right now all the bags are made in Mexico so there is no European stockpile to tap. Though, that might change before any other machine hits the market. No machine will be on the market before 2012, in the US, because no machine is in trials at this time and a full FDA trial takes over a year - closer to three.
I’ve checked to see if we can have supplies shipped within Mexico since that’s where the supplies are manufactures, but there are regulatory issues that preclude that. My next attempt will be if we can pick up the supplies ourselves. DanL has agents and trucks in Mexico. The factory is closest to Mazatlan and the prices can be moderate there. We can even rent a villa for a bunch of us.
The thought of enduring all those days off on in-center dialysis is terrible. Enough to make me not want to travel. Getting supplies to Europe on a cruise ship is interesting but the time it would take makes travel like that pretty restrictive. I’ll need to give the thought of in-center dialysis some more thought.
My neph mentioned a center in London (forgot the name) that does in-center 5 days/week. He suggested I go there. Might be worth changing our destination just to do that.
I’ve traveled to most of western Europe, dialyzing incenter. Since 2001 all my travel abroad (except the recent Freedom cruise) has meant switching off more frequent dialysis at home and accommodating a conventional schedule. My experience is that the energizing effects of travel outweigh the energy sucking effects of conventional dialysis and I feel alright while traveling. That said I’ve had rough patches that I probably wouldn’t have had if I hadn’t been dialyzing incenter.
In London, The London Clinic will dialyze you as often as you are willing to pay. I’ve dialyzed there several times and it is a nice, small unit where the sandwiches served during treatment have the crust cut off and tea is properly served in actual porcelain. My insurance through the union reimbursed me for whatever I spent I dialysis so I did have an occasional 4th treatment or a couple weeks of every other day dialysis. I also had back to back weekends.
Things to think about - longer treatments rather than more frequent - in Tassin you might be able to get nocturnal runs, not sure where else. Also the rate charged for dialysis varies widely, with email it is much easier to get prices ahead of time and plan from there - for instance I believe as you go south and east, prices come down a bit so maybe Croatia would make a more logical base, than Holland. Also something I have never tried but am thinking more and more about - I haven’t been working enough hours through the union to maintain insurance recently - is writing ahead and asking if they would swap dialysis for speaking, or maybe give a self pay discount. It’s worth asking even if only for a few runs out of several weeks.
One issue about taking a cruise to Europe is about the power in Europe v. USA. I believe people have taken their cycler after sending supplies so it may not be an issue but something to confirm before planning a trip to Europe with your cycler.
The London Clinic is a private hospital (which indeed does sometimes dialyse NHS (State) patients due to capacity. Almost all units in the UK will accept private patients if theres room. You will need to be in touch with the renal consultant of that unit. All the units seem to differ in what capacity they have for holiday makers etc etc.
Most NHS hospitals run 6 days a week, with 3 shifts a day Morn/Afternoon/Twighlight . Typical treatment in unit in the UK is thrice weekly…
London Clinic http://www.thelondonclinic.co.uk/specialties/dialysis__renal_medicine.aspx