ET AND FLYING

[Camelian]

Hi I'm going on holiday in August and I'm worried about developing a clot after reading posts from people who did. It's a 4 hour flight. My question is have many people with ET had problems flying and what precautions should I take. At the moment I'm on low dose aspirin I'm going on hydroxy when I'm 60 I'm 57 at the moment.

[WileyFrench]

Hi there - I have ET and am on hydroxy, clopidogrel and low dose aspirin. I took two flights last year - one of them was over 5 hours - with no problems at all. I’m about to take another 5 hour flight on Saturday. I’ve had two TIAs (hence my clopidogrel and aspirin combo) and asked my doc if I should not fly and she said there was no reason at all for me not to. Just make sure you stay well-hydrated (water) on the flight and get up a couple of times if you can during. You’ll be fine.

[Raphael_UK]

Take the usual precautions, move around as often as possible by walking in the aisle

avoid crossing your legs avoid wearing tight clothes that can restrict blood flow.

stay hydrated, and avoid alcohol before and during travel. Check your medical practioner says it’s ok. Make sure you have correct medical insurance and have fun. Don’t let your illness rule your life.

[Camelian in reply to Raphael_UK]

Thanks for the replies with regards to flying I'm seeing the hematologist on Thursday so I'll add it to my long list of questions . Im really trying to not let this illness take over my life but it's very hard to stay positive I'm an overthinker by nature. This site has helped me understand the illness a lot better so thanks to all.

[Mardihel]

Hi you should have no problems at all especially taking aspirin, I flew a long haul 13hrs to south Africa and I had high platelets, wasn't on anything until they found I had et last year, now on aspirin and hydroxy I am 63. Good luck

[Camelian in reply to Mardihel]

Thank you that reduces my anxieties.

[bordeauxgirl in reply to Camelian]

I have PV , had two TIA's, take Clopidegral, Hydroxycarbamide, and a host of other meds and every two years I fly to New Zealand to visit my son. Never had a problem , get up walk around keep hydrated and forget all your troubles and enjoy your holiday.

[Camelian in reply to bordeauxgirl]

That's reassuring. does this condition increase the travel insurance by much?

[Raphael_UK in reply to Camelian]

I was surprised the holiday insurance only went up a few pounds.

[Deefen in reply to Camelian]

It increased my travel insurance by $120

[bordeauxgirl]

Hello again , As long as you are completely honest and give every detail of ALL conditions 'Staysure' I find are the best. Obviously you pay a bit more than if you are the fittest person in the world but as a pensioner I find it reasonable and completely at ease on my holiday.

[Camelian in reply to bordeauxgirl]

Thank you bordeauxgirl.

[AndyT]

As others have said, taking the usual precautions of moving around and staying hydrated are sensible - maybe also wear compression socks to further reduce the risk of DVT.

When flying long haul (about 5 hours or more) with high platelets I used to inject low molecular weight heparin prescribed by my haem but don’t need to any more, since my platelets are now in normal range due to treatment with Pegasys.

Enjoy your holiday..!

[Searcher56]

I am ET JAK2+ 63 years old. In 2017 I flew to Brazil, no problems. This year I am planning to fly to USA and I don't expect problems. I declare everything on my travel insurance and even speak personally to the rep at the insurance company.

[Deefen]

I have ET - on aspirin - 62. We fly long haul at least twice a year - that means 20+ hrs of flying in a day or so. I wear properly fitted compression stockings, get up and move around a lot, and drink heaps of water. I’ve never had an issue.

My haematologist says anything over 4hrs you need to take these precautions - so you are borderline?

We’ve decided from now on we’ll stop over overnight halfway - so two flights of about 10hrs. We also usually fly business class - which means my legs aren’t cramped up and I can stretch out. I know this is a luxury, but I’ve discovered some great ways of getting good deals.

I really stressed out the first long-haul I did after being diagnosed, and walked the aisles so much I was exhausted! I’m a bit more chilled about it now.

I’m also very fit and exercise every day - so I think this helps too.

Enjoy your holiday and don’t stress out!

[Camelian in reply to Deefen]

Sounds good I don't think I'm as fit as you but I'm trying to do a bit of exercise each day and implement other lifestyle changes like not sitting for too long which is often difficult because my job involves a lot. Of admin work. I'm drinking more water this in itself is a task. I don't drink alcohol so that's one less worry. I never realised how often I cross my legs since I've been trying not to. Can I buy flight socks from the pharmacy?

[Deefen in reply to Camelian]

It’s best to have flight socks properly fitted as you have to be measured exactly for them - you can claim them on your medical insurance (doc can give you a recommendation as to where to go). I had to go to a special medical supplier to get measured and fitted - they’re VERY tight and quite a workout to get on properly! When you’re fitted, they’ll show you how to do it. They cost me about $70.

[Camelian in reply to Deefen]

I'm seeing the hematologist tomorrow so I will ask him where I can get them I'm in the UK so may be a little different. Thank you.

[piggie50 in reply to Camelian]

Hi Camelian,

I got mine online from vitalactive.com you need to measure your leg, send the measurements and they send the best fit for you. Not totally made to measure but fit better then the ones from the chemist and not expensive. I also chose the natural colour rather than black. I found them very comfortable.

I’m in the UK.

Judy

[Camelian in reply to piggie50]

Thanks July that's really helpful.

[SuekJ]

Hi, I’m a regular flier, ET Jak2+ a four hour flight isn’t very long just drink plenty, time it so you take your aspirin an hour before flight and wear compression socks. Fidget as much as you can on board! I have taken several long haul flights in excess of 8 hours and my haematologist has prescribed a heparin injection to self administer at the airport. I’m 57, take aspirin and Hydroxy and Anagrelide, platelets hover around 600 - 800,000

Try not to worry, you’ll be fine!

[Marketa]

hi, i take heparin injection before the flight. it has been recommended to me by my hematologist.

[wotan10]

Good morning Camelian.

My top tips ate not mandatory but in the past two years it has made me feel less worried.

Buy the best flight socks you can afford.

Wear loose fitted clothing layered if possible.

Keep off the alcohol for two days either side of your flight.

Keep well hydrated, during your whole holiday.

Move around during your flight ask for an isle seat then you will not disturb other passengers when you go for a wander.

Try to keep your stress levels to a minimum.

On this web site, you are not in isolation. We all have been where you are and with support from our teams we are adapting to the changes this condition throws at us.

Try to remember our condition is long haul management based on sound and knowledgeable information from highly trained professionals.

Take your medicines regularly, never miss them and live your life to the full.

I have been diagnosed with ET for two years and my levels are now normal.

I an 65, I try to walk and do my swimming, keep fit.

I bought a small salt lamp that I use at night, my cat loves its ambient glow and we purr along together.

Never loose your sense of self and laughter is free.

Take care, keep safe.

[Camelian in reply to wotan10]

What a lovely reply and I will certainly try to follow your advice. Just out of interest what's a salt lamp?

[wotan10 in reply to Camelian]

Hi good evening it's a rock salt lamp .

It makes you more calm.I bought mine in the UK, it cost me 27£ two years ago.

I keep mine by my chair as the plug is near by.

I was distressed at first.

Now I feel more relaxed about every thing.

Just had my three month check and levels are now normal.

Result. Happy bunny.

It beats hugging a tree, this works to.

Enjoy your holiday.

[Grumpyfairy in reply to wotan10]

Hi been thinking about getting one of these to help with my stress levels, good to read about someone who has one, thanks

[Camelian in reply to wotan10]

I'm definitely going to look round for one anything that reduces stress has the thumbs-up from me. I'm so glad your count is in normal ranges I'm going for my check tomorrow so fingers crossed all is well.

[tina6]

Hi I was using staysure for my annual policy, but this year I have changed to AllClear as they were cheaper by 80.00 for the year, if you go on their comparison website where you can obtain a few quotes for all your needs! hope this helps and happy holidays!

Tina x

[Camelian in reply to tina6]

Thank you Tina I'll do that.