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Backpacking as a Hemophiliac.
Sat, 03/15/2008 - 18:47
Hello,
I’m a first time poster that has been considering backpacking Europe for quite some time. I’m almost entirely determined that I will be setting out within the next year and a primary concern would be traveling with medical supplies. So I had a few questions revolving around my condition.
Unfortunately, I need to carry syringes, intravenous butterfly needles, alcohol swabs, gauze, and multiple vials of medication that (in the best conditions) should be refrigerated (cold packs however can suffice just fine however).
This is a big hurdle that I’ll have to overcome, but it’s something that I’m not going to allow stopping me. I was just curious if many hostels would allow me to store a couple small vials if needed while I’m staying in a refrigerated area.
Another question would be does anyone know about traveler’s health insurance? If I’m planning a long trip, I would almost certainly need to get more medication throughout the duration of my trip so I’m not traveling unbearably heavy. I’m also curious if it would be even remotely possible that it could be shipped from family members in the United States through customs somehow, and possible solutions on how I would be able to receive it. (i.e. if I’m registered to be staying at a hostel is it possible to have a package shipped there? or should it be sent to a local Post Office, etc?)
I know it’s a pretty big post and there’s some pretty decent issues revolving around this, however I’m not looking for “I would advise not taking the trip” as this is truly something I wish to accomplish and I don’t want to miss out simply because I have some inconvenient health issues.
Lastly, sorry if I posted this in the improper area, but it seemed that this was the best suited category as it involves items that I inevitably have to take with me.
Thanks for your Support!
Wes
Hey Wes
Yeah that is quite a situation. Can’t say I have any thoughts off the top of my head (and I doubt if anyone else on here has had to deal specifically with this), but I’ll look into it a bit. I lived there when I was little and my dad would certainly have an idea of med supplies (at least for Nice…but that could probably apply to elsewhere) shipping. Just wanted to let ya know it wasn’t going ignored, even if it does take a while to find anything substantial!
You may be able to check customs websites for different countries? Might be a dead end, but they may be able to send you in the right direction.
Reykjavik, Paris
Many hostels have kitchen facilities with refrigerators, although that might be a security issue. Others have bars or cafes and may be accomodating about allowing you to store your stuff in their refrigerator. I’d check (e-mail) a few of the places where you’re planning to stay and ask — now, in the planning phase. Assuming most will be accomodating, you can call or e-mail a couple of days before you arrive in a city to make a reservation and arrangements for your stuff. I don’t know what your temperature issues are, but I’ve yet to see the European refrigerator that’s anywhere near as cold as the 33 to 35 degrees fahrenheit that’s generally the US requirement for restaurant and grocery store refrigerators.
In hotels, even the cheaper ones, mini-bar refrigerators are very common. You can always pull out a few of the terribly over-priced Cokes and stow your own stuff there — though I’d probably mention it at the desk, so your stuff won’t get tossed or you get charged for the things you temporarily remove.
I would contact international shipping agents like UPS, DHL, Fed-Ex, etc. and see what they say about shipping your medical supplies. They ship drugs from mail-order pharmacies worldwide and they will generally ship to any physical address — though usually not to post office “general delivery” or post boxes. Check their websites first and then call (or visit their local office) for more information — like if you have to be there to sign for delivery.
I definitely think it’s possible,but certainly requires lots of planning. Refrigeration should not be an issue. Carrying sharps shouldn’t be either, probably should have a doctor’s note though. How long to you plan on travelling? How much supplies would you need shipped to you? I wonder if your doctor or a clinic can make arrangements for you to pick up supplies at some point on your trip. It is a blood product you require, right? (I should know this, I’m a nurse!) I’m just thinking that posting a blood product might not be as easy as a drug, in terms of dealing with customs. Maybe the hemophiliac society has advise on such matters.
Good luck and let us know how things work out!
i would not leave your meds in a hostel fridge
i would recommend going to a Bed and Breakfast or hotel if you need to refrigerate things
London, Paris, Tours, Caen, La Rochelle, Annecy, Genoa, Venice, Florence, Rome
While it’s geared to travelers with mobility issues, Rick Steve’s Easy Access Europe lists some organizations and websites which might be helpful:
International Association for Medical Assistance to Travelers www.iamat.com
Center for Disease Control www.cdc.gov/travel
www.personalMD.com
Wow!
Thanks everybody for your support and assistance in this! I’ve done a bit more research myself now and I contacted the European Haemophilia Consortium ([link]http://www.ehc.eu[/url]) So hopefully they can provide me some additional information and I will post the information for any future hemophiliacs that can help ease their trip as well! I also plan on keeping a very detailed blog of my entire trip to help educate Hemophiliacs and people interested in Hemophilia as a sort of way of “showing them” that despite having a severe medical condition, we can succeed and achieve whatever we want to do.
In regards to keeping cold, I could reserve space in the bottom of my pack for my vials that need to be refrigerated and use cold packs and if I need to toss them in a hostel fridge it’s not as big of a deal if something happens and I lose the cold pack, they’re much more easily replaceable and inexpensive.
I plan on traveling at least my 90 days throughout Europe, extending my visa if need be and if everything is going relatively smoothly, I plan on obtaining visas for new destinations and continuing on. I certainly realize there would be no way I could take a full supply of medication for the full three months as it would be quite a burden carrying 10cc syringes, butterfly needles, and all the vials, so I’m hoping there can be a somewhat convenient method of getting additional medication shipped to me somehow at least in Europe.
I’m certainly going to wear a “Medic Alert” bracelet or necklace as well as keep documents on my person in every local language that explains what would need to be done in the case of a severe emergency.
Pretty much Europe plans to be my “control” test and if I’m feelin’ good about everything I will continue onward provided I have adequate visas.
Thanks again for everyone’s support! I’m looking quite forward to my trip, I have to have a surgery unfortunately beforehand but once that’s done and over with I think it will be time. I plan on using my down time to get everything planned out down to the smallest details.
Cheers,
Wes
The medications I require are some of a blood product, but in today’s world it’s entirely synthetic. I’m certainly going to start speaking with my treatment staff very soon on how all of this can be handled and maybe if there is a possibility of shipping the medications to a treatment center there as a possible solution.
I wouldn’t probably want to carry more than 2 weeks medication on me at any given time in the best case scenario, with an additional few infusions on standby in case of an emergency. There are different concentrates and insuring I travel with only the highest concentrate would be the best case as well since it would require carrying less vials.
That said, I’d probably need 30 doses of factor minimum for a 3 month trip assuming I’m infusing every 3 days. I would want to have about 50 total if possible so that in an instance of an emergency, I can handle it myself and in the event of a more problematic bleeding episode, I would probably relocate to a single bed facility for a few days so that I can recuperate with minimal hassle. Having said that, I am sure at some point in the trip I’ll have to take a “time out” to rest a bit more than most but I certainly know my limitations and as long as I pace myself and keep regularly infusing, I’ll be fine.
My ankles & knees I’m sure will take the biggest poundings on the trip and I plan on taking aircasts for each ankle (they’re quite small and provide great support) and a small sports knee brace if I need for my most problematic knee.
I plan on discussing everything in much greater detail with my hemophilia center staff at my next appointment to try and see if they can get me some answers as well. I will probably start posting all of that on my personal blog once it really starts going to help others with similar conditions seek answers to these questions.
Cheers,
Wes
I’d think seriously about something less than 90 days. While I think you’ll have a great time and probably have no problems, 90 days is a long time for travel and why fight the visa hassles when you can always go back? Most people seem to plan their first eurotrip as if it will be their only eurotrip. That’s not the case — if you enjoy yourself, you will find a way to get back, even if it means short trips, traveling with a toddler, or serious crimping of your life style the rest of the year.
I agree with oldlady. Most people in perfect health don’t travel for 90 days. If you’ve never done a trip of that length there is a lot you will not be expecting, from the extent of road fatigue to homesickness. These aren’t really things you can get a good idea of in advance. Europe isn’t going anywhere, so unless you know for sure this is the only time you will ever be able to go, no sense in pushing it that much.
I may do a shorter “trial run” trip of about a month or so before hand to see how it goes with medication and such.
In terms of being homesick, I’m 27 years old and have moved about the United States multiple times living far away from or leaving behind family and friends for extended periods of time.
There are definitely a few other reasons that I was considering such a long trip. Higher costs of the initial travel costs (flying over) isn’t a major issue, but it’s something I’d have to consider. I also want to be there during the Running of the Bulls (certainly not participate, not ready to bleed to death from being gored!) as well as Oktoberfest.
Lastly, seeing the amount of decline I’ve had in my body since I was 19-20, I don’t want to throw it to chance that I’d maybe someday only be capable of seeing the rest of Europe in a Wheelchair. There are also additional health concerns that could also come into greater play later in my life that probably won’t be an issue, but even still, it’s something I don’t like to put to chance and “roll the dice” only to end up having to go back with much less physical mobility, or even worse not at all.
That said, I certainly could see doing a “trial run”, going to San Fermin, staying for a month or so, seeing everything I can in that month and hope to come back just before Oktoberfest.
Cheers,
Wes
You might find Rick Steve’s Easy Access Europe an interesting read. It’s extremely detailed in terms of visiting London, Paris, Brugges, Amsterdam and the Rhine Valley as a wheeler or slow walker.
Well let me begin by saying that I am a Diabetic that has to carry insulin and I have taken it on several trips to Europe and Africa (more difficult). My insulin does have to be refrigerated for long term but can go a while at room temperature. Additionally I require syringes.
While traveling I did have my family ship me a package (to France) with medicine and syringes, it made it no problem. I had everything shipped in its original packaging and had a copy of my prescription.
About that I had my doctor give me several copies of all prescriptions, some for the American drug, and also for equivalent European drugs. As I understand it I could not have gotten my American drug, but any pharmacy would have carried its European equivalent and supposedly would have honored my US doctor’s prescription, I did not try this out though.
While staying in hostels I keep my meds in the fridges their. I always keep two separate packages, one with a note on the outside explaining it was meds for diabetes please do not take, the other (also with discreet not) hidden in some old cheese packages and the like, never had any problem.
The closest I came to a problem was in England were their security questioned me about my needles, but the prescriptions got me through. (Not with out my picket knife though)
You can get special cases such as this:
http://www.medicool….
http://www.lifesolut…
I ended up just taking a small insulated lunch bag thing, it worked ok but I may upgrade.
Good luck
Ty
Awesome! Great news! Thanks for sharing your information and experiences Ty, it’s much appreciated!
I also spoke with my doctors and they said other hemophiliacs have done it as long as two months or more even! So it’s definitely helped boost my confidence knowing I’ll be able to take care of myself as long as I stay a couple steps ahead of the game and always plan ahead.
Thanks Guys & Gals!
Wes
Did you start a blog yet? As a lover of travel and a soon-to-be RN I am really interested in hearing more! How about keeping your meds in a lunch box with two ice packs, one ice pack in the freezer by day and the other by night? I’m not sure I would trust life saving medications in a fridge that others have access to. Good luck and have a great time!
Paris, Pontorson, Amboise, Beaune, Gimmelwald