Self management and long-distance travelling

[YvonneW]

Hello All.

I have done a considerable amount of long-distance travelling across several time zones in the last few years and have some very useful tips for successful management of Warfarin and INRs.

1) If changing time zones, buy a digital watch and keep it on UK time. Set the alarm to beep at the usual time you take warfarin, so you never miss a dose or under/overdose wherever you are in the world.

2) Make sure your insurance company has APS as a pre-existing medical condition and named on your policy.

3) If travelling to a non-English speaking country, Google 'Antiphospholipid Syndrome' in that language and print it, so you can hand the info to medical people if you need to and it's all explained in their language.

4) Make sure your contact/medical details are easily located in your bag/purse/passport/medical bracelet etc.

5) Get GP/hospital to write a cover note if you have to take pre-loaded syringes through customs.

6) Take a double amount of tablets with you.

7) Be aware that long distance travel and changes in diet and drinks do affect your INR.

8) Make sure you have enough test strips with you for your self-testing machine and it is protected in bubble wrap in transit. Keep it in your hand luggage.

9) If you need to seek and pay for medical support, make sure you get all the documents to give to your insurance companu when you get home.

I hope this is helpful! If I think of anything else, I'll write another blog!

Take care.

[MaryF Administrator]

Very concise and useful advice, thanks. M

[travelnut]

Excellent tips Yvonne. Thanks for sharing.

[TJSTICKYBLOOD]

Very useful, how about the actual effect of air flight on you, do you ensure more than normal walking about?

[YvonneW in reply to TJSTICKYBLOOD]

Even though I have an INR therapeutic range of 4-5, which is quite high, I still do all the usual sensible things like getting up for walks, leg exercises in sitting and drinking water - just to be on the safe side.

[Andrewl]

Hi Yvonne,

great to hear your viewsand news. I was under the impression that I shouldn't fly. If I can get on a plane it will be great. I do not have a self test kit. Is this a necessity for flying abroad?

Great tips, thank you .Cheers.

[YvonneW in reply to Andrewl]

Flying is fine, but check with your specialist as it's important to get advice that applies to you and your anticoagulation specifically. A self-test machine is not essential, but it was for me as I test every 3-5 days to make sure I keep my INR in range, so I didn't want to spend time or money out of my holidays finding a hospital to get a blood test done. It has given me so much more freedom I personally wouldn't be without it, but a Coaguchek XS from Roche costs about £300 and not everyone needs or can afford one.

[paddyandlin]

Hi Yvonne thanks for the fantastic infomration i know it would be good for the group. Hi Andrew yes you can fly you just need to talk it over with your consultant/heamo. you do not need to have a self kit i do not have one i mainly use the advice from the doc

[Storky]

Hi Everyone. I saw the great man himself this week and asked the actual question about flying. His answer was that it was probably sensible to have a heparin Injection. I would add here that we were discussing my case and talking about long distance flying ie USA.

So, to those who thought they could not, the answer is yes you can but discuss with your doc about what is appropriate with you.

Secondly, the above advice is great. I would just add you dont have to get a digital watch most phones especially IPhone has the ability to set multiple alarms. I set my alarm now for when my meds/injection is due so I take at the same time each day.

Hope thats helpful.

[margaretmulhern]

YES I TOO WAS UNDER THE IMPRESSION THAT I COULD ONLY TRAVEL ON SHORT HAUL FLIGHTS....THUS I WAS UNDER THE IMPRESSION THAT IAMERICA WAS OUT OF THE QUESTION.....WOULD THE DECISION HAVE TO BE MADE BY CONSULTANT IN HAEMATOLIGY

.

[Andrewl]

Many thanks, folks, that information is really helpful,,,,,,thank you all for your input. Maybe a holiday abroad next year...you've made my weekend. Thanks.

[judes]

Good advise and something I have done myself in the past.

However I stoppped long distance travel not because of the flying but the cost of insurance iit is horrendous. If you don.t declare a pre exisiting mediacl condition you wont be covered and if you do the insurance companires load it so much it is not worthwhile.

Even going from the UK to France for 2 weeks by ferry tghe insurance would have been over £250 when I looked to go to America it was nearly £900 more than the cost of the holiday.

[YvonneW]

Hi judes. I agree it is so unfair that the airlines load the premiums when I'm on so much warfarin and the one person on the plane who is NOT likely to have 'economy class syndrome'!

I have my travel insurance through my high street bank. I pay a monthly amount that includes free breakdown, phone insurance, travel insurance etc plus £80 a year to cover me for worldwide travel with a named pre-existing condition. The Hughes Syndrome Foundation has good information on insurance companies who charge fairer premiums. Check their website hughes-syndrome.org

[judes]

Hi Yvonne like you have insurance through my bank but doesnt cover the Hughes

side of things,but does cover my i phone so some insurance joy.

I tried the insurance through the HSF and quite frankly was no different to any other, like you feel that we are the most unlikely to suffer cattle class syndrome.

It doesn't stop me travelling just stick to Europe there are plenty of places I havent been to and flying to Spain soon and then Belguim later in the year by Eurostar

[TJSTICKYBLOOD]

This is all do interesting, I have been sticking to short haul flights as I thought it was better. Because of the hughes I have a lot of joint pain and problems with one of my legs so stiffness and swelling is my main problem.Also a word of warning if you are going on holiday be careful of your alcohol intake as it is easy to drink more than normal which can affect your INR level.