Hi everyone, I have hugehs syndrome and I want to go travelling- what do i do about testing?

Im 24 years old and have coem to the stage in my life in which i want to go travelling. I am from the uk and am travelling to the us for three months. the dr have offered me no solutions of what I can do about blood testing and Inr _ has anyone else been travelling with this condition?

15 Replies

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  • I was told by my rheumy that you have to be careful about flying long distance because of the risk of DVT and other clots.

  • Hi there, where you planning to travel?

    I live in spain and normally get my inr tested in barcelona hospital. I went sailing last summer and went to the hospital in formentera in the spanish balearic islands and got an inr test done twice in one week, plus got treated for a lung infeaction with antibiotics.

    the hospital in formentera was not familiar with hughes aps so it would help if you could have a print out of a brochure or extract from the hughes website in the languages of the countries you are visiting, if translations are available.

    It really is something you should go to a hospital for as they are more likely to have the equipment necessary to do the test as well as an in house haematologist to advise on dosage levels plus treat you for any other things necessary during your travels

    Perhaps you shoudl also consider some medical id jewelry which has ingraved your name date of birth, any medication your are taking, and an emergency contact number.

    Its a brave thing to do to travel and manage this condition but with prior planning and a positive attitude it is possible. Take some time to research the locations of the hospitals on your planned route, make sure you have some money in an account you can reach in an emergency and make sure you have up to date medical or travel insurance so you can get treated in an emergency if you are unable to make the decisions yourself.

    Hope this helps, hope others cover anything i might have missed. again, where are you planning to travel to?

    Best regards

    Sara

  • oh yes, short haul flying is ok---2hour flight for instance....long distance you need a consultation with your doctors.. I think you may need heparin for long haul flying

  • thank you so much for your reply that really helpful I am going to the usa for 3 months to work in a summer camp. I know they pay for all there health care over there so would I pay for it up front and then claim it on the insurance? im not sure how it will work and my dr was really unsymapthetic he said that if I choose to go abroad for such a long time I should make provisions for myself he didnt offer any advise at all!! grrr! I just wondered what people normally do it these situations? xx

  • Lorinda, I think you may be shocked at the US healthcare system. If you have to go to our version of A&E it will end up costing you thousands of dollars. An INR test probably over $100 each time when you have to visit a place.

    Health care isnt free or paid for here- if you don't have insurance valid in the US (which National health isn't), then they will ask you to pay up front in most cases except emergencies. They can and do send people home here!

    Have you asked about self testing with a machine to see if this a viable alternative? Have you talked to the camp about your medical problem as well? They may have you undergo a physical and if you don't pass, not be qualified to work for them.

    I am from the US (an RN in A&E) but here in UK for a few months so let me know if I can help in any way.

    PS your doc sounds like a jerk unless he/she is only trying to get you to think this through more thoroughly.

    Kristina

  • That sounds great, I hope the work and the hours and work at the summer camp are going to be ok for you. Do you know exactly what is expected of you yet? Is your employer aware of your condition.? just ask as depending on the hours and activities, summer jobs can be quite hard work. Hope you manage to get all the information up front so you know what to expect, and can talk to your employer to find a balance to accomodate the hughes angle.

    The pay and claim situation is very normal, just hope the prices are reasonable if you need to use it, great that you get health care included though

    Sorry to hear your doctor was unsympathetic, he is doing the right thing by pointing out that you will have to provision for yourself, just a shame he couldnt have been more helpful and informative.

    Hope it all works out and you manage to plan well ahead for yourself

    sara xx

  • Hi there.

    I am on warfarin with a theraputic range of 3-4. I have a machine and i self test and phone my results in to the warfarin clinic at our local hospital and they dose me over the phone. We travel abroad 3 or 4 times a year and the same principles apply. I take my machine with me and carry it in my hand luggage. If you can get a machine, then it is the most practical way for travelling as it gives you freedome.

    I would suggest that you ensure you take sufficient medication in your hand luggage and you hold luggage (double doses!) this means that should your luggage get lost in the flight you will have backup.

    I also take a copy of the Hughes guide for patients (the blue book you get if you have joined the hughes syndrome foundation). It gives a good description of the disease in case i need it abroad.

    I would also take a list of your medications with you and details of your consultant in the UK in case anything happens and hospitals abroad need to make contact in England.

    As for flights, i have travelled long haul and i tend not to worry too much as i know i am anti-coagulated. I drink plenty of water and don't feel daft when i stand and walk around the cabin regularly. Don't drink alcohol on the flight and do wear flight socks.

    You will be fine, but talk to your GP for reassurance and enjoy yourself

    Hope this helps

    Louise

  • thank you louise that really helps :) xx

  • I was told despite being on Warfarin that I could fly, long distance I must have to get my INR checked before I go and if its low have a Clexane injection, I have my own machine I don't know how you would be able to do it otherwise.

    I am going to check exactly the dose needed later.

    Can you speak with someone higher than your Gp?

    The most important thing is after sorting out meds etc is that you have really good insurace.

    Good luck hope you have a lovely time

    Love Karen xx

  • Just a thought do you think your Consultat would let you have Clexane for the time you are away much easier and you wouldn't need a INR check

    Karen

  • Celaxane wouldn't be that reasonable to take, I looked into it for here. They are single doese injections and to carry that much would fill more bags than you are allowed!! Its also very expensive to obtain in the US without insurance (1500-3000 for a month supply).

    You will prob need a supply though for flying and for when your INR dips too low so you would want to bring some with you if you cover like that. It would be way too expensive to get on your own.

    bringing enough warfarin would be wise, as would be setting up as a patient with a doctor near the camp who is familiar with warfarin, probably a hematologist. Warfarin is very inexpensive here at many pharmacies (chemists) though if you can obtain a US prescription- $4.00 at Wal Mart for a month's supply, but you would need doctors visits, prob they would order testing, etc, all at great cost to you before administering.

    If you go the self test route, I understand that there is period at first to check how accurate your results are compared to the labs's results, so you may want to start to check into this now (I don't use warfarin so maybe someone who does can comment further here?).

    In the US they don't call it Hughe's, they call it Antiphospholipid Syndrome. And don't be surprised if the docs have no clue at first- many still haven't heard about it, although recognition and understanding is gaining.

    Also start gathering your medical records now. This could take time but you would want a dossier prob with at least 2 or 3 copies of your records pertaining to APS and any other condition you have- the docs will want to see them as well, and then they still may question the diagnosis or still want to re-run tests to confirm! It can be a huge pain, especially if they want to send you to this specialist and that specialist without coverage.

    So its not impossible, but you need to plan well and be very prepared for everything and anything.

  • Hi there,

    A lot of great advice here, which I agree with! :) When it comes to flying make sure you drink loads, walk around every hour or so, and wear flight socks, stockings or tights. I got clots in the deep veins of both my legs so suffer from acute post thrombotic syndrome so it can be painful when I fly as I swell. I don't know if you have this issue but for those that do I advise requesting a bulkhead seat and raising your legs. Makes a huge difference to me.

    If you cant get a bulkhead you can simply wander down to the back of the plane and lie down and raise your legs against the wall. I've had to do that before!

    I love to travel but do short trips rather than month long excursions because of the testing, but when I went to NZ last year for 3 weeks I needed mine done so I just walked into the nearest GP and asked them what I needed to do. It was a quick blood test and a pop back the next day and I was all sorted. Im pretty sure the US won't be a problem for you, check out the web for details on blood tests over there or if you have friends/family get them to ask their local doc what you'd need to do.

    Getting your own machine is a great move if you're planning on being away for a while - you can do your own tests whenever needed then call into your own GP to get them to tell you whether your dose needs changing. So I'd def recommend that route. Always take your medical docs (I got a bracelet stating I was on warfarin too) and more than enough tablets with you, and have an amazing time travelling - im very jealous!!

  • Hi Lorinda

    See if you can get hold of a copy of the latest copy of INR Review . There is an article written by a young guy who goes travelling and uses a coagucheck machine.

    Caroline

  • Hi Lorinda

    I have a CoaguChek machine and have taken it with me to France and Italy. I have a wonderful GP who allows me to do my own testing and my own management too; she says that I know more about adjusting my dose than she does or most INR clinics do. I test everyday and the thing to remember is only adjust if you see a genuine trend up or down, do not try to micro-manage small changes in INR, as changes in dose take a day or two to take effect and this can cause over/undershooting.

    Yty to be consistant in your intake of Vit K foods (including leafy green veggies, brocolli, ofal such as liver) and also be consistnat in you intake of alcohol, roughly the same number of units per day, not a binge night and then no booze for several days.

    The others on here have said about moving about during the flight, water consumption and flight socks, all essential.

    Best wishes and good luck.

    Dave

  • thanks everyone for all your advice, I am new to this this site and its really nice having the support from everyone; you have all made me feel so much better knowing theres a place I can go to ask questions and get advice from people who are experience the same or similar issues, all my love Lorinda x

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