Further to my query about travelling...

[angiek]

Hello again all,

You may remember my first post/question about travelling and being at altitude, not sure if I should have tagged this on to the original, but decided to create a new post?

To recap I had a first (major) AF episode on 29th March, spent day in A & E, heart rhythm returned to normal by itself, but BP still very high. Given Bisoprolol 2.5mg which I have been taking daily since. The following week GP arranged 48 hour BP monitoring (hosp had said it would be one I wore which inflated itself and checked every hour, day and night, but my surgery only had ones you just have to put on and measure 10 times a day). The readings were very varied but within a 'normal' range (which I guess they should be on Bisoprolol?) After explaining to GP that I am short on time before my planned and paid for holiday to see my son in US, he told me to chase up the hospital 24 hour ECG and echocardiogram. This I did and a very helpful receptionist in Cardiology managed to book them for last week. The operative told me that ordinarily the results would take at least 2 weeks, but he did say my GP could chase it up if he explained that I am going away. So yesterday I rang and asked my GP if he could try and do this for me. He was very short with me and said I should not have been told that because it wasn't true and that I could try and chase it if I liked! I got very upset -actually for the first time since this all started- I feel as if he neither cares nor understands how it feels to maybe have something wrong with your heart! It actually is a big deal! I explained again that I really need to know what is going on before I fly, but he just said words to the effect of 'go on holiday and sort it when you get back'. Anyway I did ring the hospital and find that the results are not even going to a cardiologist as the doctor in charge of A & E on the day I was admitted is a Rheumatologist, and as it was him who ordered the tests the results will go to him.

So it is very unlikely that I will get to see anyone who specialises in this problem before I leave on May 1st. I have had 5 or 6 minor episodes of AF since the first one, usually at night, one slightly bigger one in daytime where I had to sit down for half an hour or so. I also have some tightness/discomfort in the middle of my chest which I didn't notice before. And quite a few days where I notice a lot of 'fluttering' but my pulse is regular at the time.

I am going ahead and visiting my son- mostly I feel fairly well and I have been planning and waiting for this trip for a long time. Most of you previously advised that I really should be taking an anti-coagulant before flying, this is not going to be possible now, so should I just take aspirin for a few days before each flight?

Any opinions/advice gratefully received, I am so glad I found this site as so far this is where all my advice/information has come from!

Angie

p.s I have today phoned my insurance company to let them now about a change in my disclosure since purchasing the policy and am waiting their call back.

pps I have discovered that neither my local hospital (West Suffolk) nor the next nearest one has an EP....could this be a problem, and if needed would I be able to/should I ask to be referred further afield where there is such a specialist, or ordinarily would a cardiologist be perfectly able to care for me?

[BobD Volunteer]

Hi Angie and believe me I do understand your problem. Frankly aspirin won;t do much for you but it may be better than nothing in the DVT department. Do wear those elegant flight sock and keep moving about if possible, If you are going to take it go for 75mg tablets every day you are away which is the normal dose. They used to call them children's aspirin.

Regarding EPs, there are really not enough across the UK but you have the right to be seen by whoever you wish so look up the main website where there is a list by area and choose somebody you can get to. Normal cardiologists may not be the first choice for most of us but you may have to see one first. I had all my treatment at Royal Brompton Hospital even though I Iive in North Devon.. I must warn you that AF is a long journey so please do not expect any early conclusions. For the most part this is you now and coming to terms with that is the first hurdle. There are treatments which can greatly improve your quality of life so do read as much as you can about the condition as knowledge is power.

Bob

[CDreamer]

Hi Angie it is hard to come to terms with and it is a long journey. Your GP doesn't sound helpful or reassuring which is what you really need right now. Bob has given you some good suggestions, the AFA site will give you loads more information than the docs ever do. As someone said on another thread is read today, when you speak from an informed place you start to be listened to much more seriously.

Glad you are still travelling, have a great trip.

[Rellim296]

You have two things to get straight - your long term treatment and your trip and your GP can't sort you out just like that, as it does take time to settle on a cocktail of -tans, -prils -olols and the like that will suit you and get your blood pressure perfectly controlled. He could be much much more supportive though!

On the anticoagulant front, I have had AF for four years and for the first three I was just fine with no anticoagulation at all, swanned off to Spain for a great holiday and had a good time.

Hope you have a wonderful trip.

[Hidden]

As everyone says, AF is a long journey and nothing seems to happen very fast unfortunately, but your doctor could be a tad more helpful. I went to Busan in South Korea when I had AF, without being on anti-coagulation and I had a wonderful journey - and that is also a very long plane ride. Insurance is going to be the challenge, but if your insurers try to charge the earth, there are various others - people have mentioned a few in previous forum posts, I've used StaySure - who will cover AF at a reasonable rate. I hope you enjoy your trip!

Lis

[EngMac]

I wrote the following for another purpose but I thought it could be helpful to you. Depending on the length of time you are in the States; and if this is something that could eliminate some anxiety and questions as it has successfully done for me, you may be able to have this device delivered to you while you are in the States.

Excerpt from another article that I wrote:

I have atrial fibrillation and wanted a heart rate monitor. When in atrial fibrillation, from my limited knowledge, blood pressure machines give inaccurate readings for heart rate as do heart rate apps. My wife found an ECG (EKG) device on the internet. It was designed by a bio-medical engineer and an electrical engineer for their father who is an American cardiologist, with over 30 years of practice experience, who took the time to give me free advice about my atrial fibrillation. The device needs a few minor improvements to make it better but it works quite well for a $150 investment. And you can have one of your charts read by the cardiologist for $10.00 I believe. It can be found at "iheartrhythm.com". If purchasers use the promo code "iheartca", they get a small discount. This device has been beneficial to me since it is the only way I found to know my true heart rate when in atrial fibrillation, wondering if I was in atrial fibrillation, and when I come out of it. Unfortunately, the only medical staff who thought it worthwhile were the paramedics in the ER. Neither my EP specialist nor my family doctor seemed interested in the charts I had saved. To me it seems like some doctors only accept knowledge they have acquired and have little interest in patient input, which could or could not be relevant. Discouraging patients who try to actively participate in their care seems counterproductive. My atrial fibrillation diagnosis experience was filled with deficiencies on the part of doctors which was very disappointing and is not the only instance of which I am aware. Even if doctors don’t consider data gathered by the patient, then a person with medical heart rate issues (not love induced) may wish to consider purchasing a suitable heart rate device for reasons such as; peace of mind, less visits to the ER, confirmation from their doctors that they will consider the information collected, showing doubting friends and family that your heart is really beating erratically, etc.

[angiek in reply to EngMac]

Thanks for that, I am in the States for 3 and a half weeks, will have a look online when I arrive and maybe order it if they can guarantee delivery in time. I have used 3 or 4 different iphone apps already, including the one recommended on the AFA website, but never manage to get it reading consistently - I have long pauses on the app which I know are not happening because I can feel a regular pulse at the time!

[Hidden]

G'day angiek,

Glad to read you are not going to put off your trip. Yeah, you are probably right, not much chance of anything useful happening before you go. Do buy yourself a pair of 'Flight Socks'. I got mine from Amazon before my last trip to Sydney but these are usually available at most airports. Walk about the aircraft as much as possible and drink plenty - not alcohol :-). Based on the treatment for AF by a family member who was ablated for AF I'd suggest Papworth Hospital, he lives up in north Norfolk. So I guess west Suffolk shouldn't be too bad.

Enjoy your trip - put AF to the back of your mind - let the flight deck crew on the plane take the stress and you go 'an have a ball.

Just a thought - maybe when you get back you should consider lodging a complaint with your local CCG - Clinical Commissioning Group - if your GP maintains his attitude. Suggest you Google or Wkipedia CCG and learn more of the options available to you..

Have a great trip.

Aussie John

[angiek in reply to Hidden]

Thank you for your support Aussie John, I have the flight socks ready! I intend to thoroughly enjoy myself with my son, we have so much planned - including watching him play in the PRP final (rugby). Will put all this AF stuff out of mind until I get back!

Angie.

[steve60]

I have flown to the states while in AF twice. Just turn your headphones up and relax. Remember in the states they call it 'holiday heart'.

[angiek]

Just to say a big thank you to all those who encouraged me to go on holiday to USA as planned pre AF.

I put myself on aspirin, wore my flight socks and walked about on flights. I had the most amazing holiday including supporting my son in a high adrenaline rugby cup final (they lost 39-38 ) hiking at 12,000 feet, trekking below the rim of the Grand Canyon-and back up again! 3 mile hike along a slot canyon, watching bison, elk, moose, wolves and hiking in Yellowstone, Grizzly bear watching in Grand Tetons and topped off with an AMAZING 4 am encounter with a Black Bear trying to get into the truck we were sleeping in! My heart and I survived, and thoroughly enjoyed, all these experiences - so I hope that AF never gets in the way of life in the future. Now I begin the battle to see a consultant, but that's a different story!