new diagnosis of AFib with RVR - British Heart Fou...

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new diagnosis of AFib with RVR

Nodoubt2 profile image
16 Replies

I was diagnosed in January with AFib and CHD was put on medication which after 4 weeks and further tests seem to have the AFib under control. I have just come out of intensive care in hospital in Spain ( whilst on holiday) after having an awful AFib attack with heart rate of 158 which required meds to revert my heart to normal rhythm.

I am now feeling very wobbly & tearful and concerned about the additional diagnosis of RVR ( rapid ventricle response) which appears to be a new layer of danger which I wasn’t aware I had. They have also now put me on Amiodorone to keep the heart in rhythm. Would love to hear from anyone else out there who has the same diagnosis and how they have managed it.

I am a 62 year old lady who has always been very fit and healthy and all of this has been a horrible shock.

We were on holiday In Majorca and had sailed our boat from Alicante across to Majorca I am now advised by the medical team that it is not safe for me to sail off shore back to the mainland (2x12 hour trips) so am having to pay for a professional skipper to sail her back for me. I am now concerned about whether it is going to be safe for me to sail off shore again or even continue to sail at all ( me being the only skipper on board) .

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Nodoubt2 profile image
Nodoubt2
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16 Replies
Nodoubt2 profile image
Nodoubt2

thankyou be kind for your kind words

Tos92 profile image
Tos92

Hi Nodoubt2

I’m sorry you have experienced this whilst abroad. I had a heart attack last year when I was abroad celebrating the new year, so I can imagine how stressful it is.

Like BK, I don’t have any of the conditions which you’re diagnosed with however, it did cross my mind as to whether you are a member on the AFA? I’ve attached the link below in case you are not and they may be able to offer more advice.

healthunlocked.com/afassoci...

Let us know how you get on.

All the best.

Tos

Nodoubt2 profile image
Nodoubt2 in reply to Tos92

Hi there

No I’m not a member of that association and indeed wasn’t aware of them so thankyou for recommending and I will defo check them out .

Yes very scary - I guess it’s bad enough on home turf but when it’s in a foreign country it def makes it even more stressful . Hoping to chill a bit now before returning home

Tos92 profile image
Tos92 in reply to Nodoubt2

I hope you’re not alone and your recovery goes well in order to come back to the U.K. safely.

Nodoubt2 profile image
Nodoubt2 in reply to Tos92

thankyou for your kind words xx

JaneFinn profile image
JaneFinn in reply to Nodoubt2

Hi Nodoubt, I just wanted to endorse what Tos92 recommended about the AF part of the forum, if you wanted to join and post on there too, as a lot of us there also have AF with RVR :)

I feel for you so much, especially with the circumstances of how and where it’s happened. It will feel so much better when you’re home and can get some good treatment underway that can get you your life back. If you don’t have an EP then it would be good if your cardiologist would refer you to one asap. (If it’s going to be ages and you can afford a one-off private appointment with an EP, I’d suggest you might consider doing that to get things moving.) You’re fit and healthy other than this so you may well be a great candidate for an ablation. Don’t despair, it’s horrible when these things are first diagnosed - many of us feel very scared, low or despairing for quite some time - but get yourself in good hands back home, and life will get much better again.

Good luck, please do let us know how you get on. Jx

Nodoubt2 profile image
Nodoubt2 in reply to JaneFinn

thanks Jane much appreciated. Must ask what does EP mean? Is ablation something which corrects it permanently? If so I’m surprised my cardiologist hasn’t recommended it before now but it is still fairly early days x

JaneFinn profile image
JaneFinn in reply to Nodoubt2

Sorry, I shouldn’t have just used the initials- not helpful at all! An EP (electrophysiologist) is a cardiologist who specialises in heart rhythm. Many of us have a normal cardiologist to begin with, who can then refer us on to an EP to consider treatment options for our heart rhythm if the cardiologist feels it would be helpful. That’s how it worked for me, anyway. But I know it’s a bit of a postcode lottery, and some people don’t get offered that. An EP referral is something thats very well worth asking for, though :)

An ablation is a procedure done in a cath lab by an EP, with the aim of stopping someone’s AF, or other arrhythmias. It can return later, or remain (though it’s usually improved), and some people have several procedures. But some people are lucky and one ablation fixes the problem! Personally for me (I’m on a waiting list) I’d just be happy if it’s improved so my heart rate doesn’t go into RVR when in AF. Mostly cardiologists (in the U.K. at least) seem to try to treat AF with meds first, which is perhaps why yours didn’t mention an ablation.

It really helped me to read up the brilliant info on the AFA website- I find it reassuring to understand things better :) Here’s the link:

heartrhythmalliance.org/afa...

And of course reading the questions and responses on the AFA community forum here on HealthUnlocked is invaluable. There’s a wealth of experience and wisdom!

For instance, I’ve learnt a lot about lifestyle choices/ changes that can help - and about the potential triggers for AF to avoid. Some people have found their arrhythmia is reduced simply by those kind of changes. So hope you find it helpful too. J Xx

Nodoubt2 profile image
Nodoubt2 in reply to JaneFinn

thanks Jane that’s very helpful I will def check that out and have already now signed up to the AF association . I am such a newbie I have so much to learn x

JaneFinn profile image
JaneFinn in reply to Nodoubt2

It’s such a steep learning curve for us all when we get diagnosed! I was a bit of an ostrich to begin with, I was so freaked out by it all that I didn’t want to hear anything about it! But gradually I came to realise that gaining understanding and information helps me regain a sense of order and control in the midst of the unknowns and fears. It gets better, the worst bit by far is the shock of the diagnosis xxx

Nodoubt2 profile image
Nodoubt2 in reply to JaneFinn

where is the AF part of the forum? Sorry to be so rubbish x

JaneFinn profile image
JaneFinn in reply to Nodoubt2

Not rubbish at all! I’m still clumsily finding my way around the forums, and I’ve been here for years 😂

If the link that Tos posted (above) doesn’t get you there, then the quickest way I know is to go to the top search bar “search healthunlocked”, and tap in “atrial fibrillation”. The search will come up with 4 communities that are relevant to AF. The top one is AF Association, which is the one we were talking about.

If you click to join it you can then post freely :)

Sorry am just rushing out now, but hope that might help for starters :) I’ll reply re the other questions later :) xxx

Nodoubt2 profile image
Nodoubt2 in reply to Tos92

thankyou - I have now joined looks like lots of helpful info. I think a heart attack abroad must have been even more scary x

Tos92 profile image
Tos92 in reply to Nodoubt2

You’re welcome. Becoming poorly abroad generally, I think is quite scary as it’s a foreign country, and we’re not familiar with the healthcare systems either. I had a very good experience abroad when I had my heart attack and was well looked after so I’m thankful for that.

I hope you’re feeling a little bit better today and a step closer to returning back to the U.K. x

Chappychap profile image
Chappychap

I'm also a sailor. I don't have AF, but I did have open heart surgery five years ago.

I still sail; cruising off-shore, racing in the Solent, and I charter abroad. I've wrestled with exactly the same dilemma that you're confronting. How sensible is it, especially if you're the only experienced skipper on board?

If it's of any relevance here are three things I factored into my decision.

Firstly, a root and branch lifestyle overhaul has brought all my key metrics back into the "safe" zone. Using the QRISK 3 and CHADS 2 risk assessment tools my risk of heart attack or stroke is not materially greater than most other people of my age. That's a test that you also can apply, and bring some quantified objectivity to what is otherwise an emotionally driven judgement call.

Secondly, I've had some long discussions with RNLI volunteers on the ethics of sailing with health complications. Their individual responses were absolutely unanimous; go for it! They say that they do what they do to make the seas accessible for everyone, not just a super healthy elite.

Thirdly, there's another objective test that can be applied. Will the DVLA still allow you to pilot a two ton chunk of metal on public roads at 70mph? If the answer is yes then surely you're also fit to dodge super tankers around the Bramble Bank!

Obviously there's a few practical changes I've made, for example even if I'm the only qualified skipper there'll always be someone else with a VHF radio certificate. But basically I've concluded this is a risk I'm willing to take, to live the life I want.

Good luck, with both your recovery and with your decision!

Nodoubt2 profile image
Nodoubt2 in reply to Chappychap

wow your third reasoning. Made me smile! This is the kind of response I really needed to hear. I’ve always been a ‘go for it’ kind of person and have always loved the challenges that sailing brings - it’s part of the fun. But I’m struggling with how fair it is to the people I’m going to be sailing with moving forward. Sadly my hubby was diagnosed with Alzheimer’s last year and he already completely forgotten how to sail - literally everything! So this trip to the islands was already a bit of a risk in that I’m pretty much single handed sailing. So if something were to happen when we were off shore , or even to be honest coastal sailing he wouldn’t be able to bring the boat back in - he can’t remember even how to use the vhf radio anymore. I’ve written out instructions but they just seem to confuse him so he would struggle to raise help other than using the EPIRB if we were off shore. Our boat is currently kept in Alicante so a long way from friends and family who might be able to come out for a day / weeks sail etc. I am already beginning to think i need to bring her home, to the UK so that we can sail with local friends who can at least use a radio/ mobile effectively to call for help . Thanks for taking the time to reply - much appreciated and it has helped a little

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