My flutter story ...: I just wanted to... - Atrial Fibrillati...

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My flutter story ...

JVPITER profile image
12 Replies

I just wanted to tell my story ...

Sydney, Australia: Age 53, previous smoker, overweight and some hypertension. In mid-2019 I started to watch my diet and exercise vigorously, and lost a lot of weight (now 178cm, 90kg, BMI 28 so still a bit to go).

May 2020: Felt a sudden strange buzzing in my chest. It seemed to come and go. Ignored it for a few weeks.

Early June 2020: Whilst checking my BP I noticed my heart rate was 150! Straight to A&E. ECG said atrial flutter with 2:1 block. CT scan showed lung abnormalities so they suspected COVID-19 and kept me in hospital in isolation for a week until not one but 2 tests came back negative. All the while in flutter. Not very nice.

But I'm grateful not to have coronavirus and I'm being looked after.

23 June 2020: CTI ablation for typical right atrial flutter. 100% success. Put me on metoprolol and rivaroxaban. Feel great for a few weeks, and resume exercise.

9 July 2020: Forgot my metoprolol in the morning. By afternoon I felt fluttery symptoms but not the same as before. Back to A&E that evening. ECG says atrial flutter again. Disapppointed. My EP is on holidays so his colleague (not an EP) cardioverted me the next morning. Straight back to NSR. Took me off metoprolol and put me on sotalol instead (40mg BID).

13 July 2020: My heart has been pounding all weekend and feels horrible. I think its the sotalol. Rang the cardiologist who increased the sotalol to 80mg BID. My heart settles down almost right away. Start to feel good again, and resume exercise.

30 July 2020: Had a new CT scan of my lungs - they are now perfectly clear. I am hugely relieved. The respiratory specialist hints my flutter might be related to asymptomatic viral pneumonia which is now cleared up.

6 August 2020: Appointment with my EP who is back from holidays - he wants to do another ablation because of the flutter recurrence in July. I ask about whether the flutter was related to pneumonia but he doesn't seem to take it seriously. Anyway, I'm happy thinking I will soon be off meds and back to normal.

19 August 2020 (yesterday): I go for the ablation. When I wake up the EP says the first ablation looked perfect (100% bidirectional block) and he could not induce flutter. He could induce fibrillation though. So he didn't do any ablation and now he thinks maybe the "flutter" in July was in fact fibrillation? Wants to see me again in 4 weeks for consideration of PVI ablation. Back on sotalol, rivaroxaban & statin.

*Sigh*

So I am now beginning to suspect my heart will not be cured of this, and I will have to manage it going forward. Which makes me a bit sad. And the PVI ablation for AFib sounds more invasive and scary than the CTI for flutter.

BTW I have bought one of the new Kardia 6-lead pocket ECGs that links to my iPhone. So if I have any symptoms I don't have to trek to A&E, I can just email the ECG to a doctor.

Thanks for listening!

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JVPITER
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12 Replies
bmand profile image
bmand

My experience is similar to yours started out with flutter on the right side had an ablation. It took care of it for a while, When back into flutter, although I didn't know it until I when to the ER. But this time the flutter was called atypical flutter and it was on the left side. I had another ablation for the left side. You need to check to see if you have atypical flutter.

jeanjeannie50 profile image
jeanjeannie50

Welcome to the forum, you've had a bit of a time with your heart haven't you! Unfortunately, it sounds typical of what we all go through at the start of and throughout our AF journey.

It goes against the grain having to take tablets doesn't it, but after 15 years and three ablations, I for one have given up fighting against them now!

Lots of members on this forum have a Kardia and should be able to help you if you have any queries regarding that.

You're amongst friends here who really understand what it's like to have a heart rhythm problem and we'll give you support whenever we can.

Jean

JVPITER profile image
JVPITER in reply to jeanjeannie50

Thank you for the welcome.

What strange creatures we are, finding comfort in the fact that others are suffering the same thing.

jeanjeannie50 profile image
jeanjeannie50 in reply to JVPITER

People who have the same condition are the only ones that truly understand just what it's like.

Hi, I am similar age to you, dropping my BMI which was around 28 to 25 has more or less stopped my AF along with flecainde. My strong advice to anybody with AF is to strive for a BMI of 25 or just under I think it's one of the biggest tools in the fight against AF along with good diet, stress management and good sleep.

Andy

JVPITER profile image
JVPITER in reply to

Hi Andy - Just had an appointment with the GP, and she said exactly the same thing!

"Aggressively manage risk factors", like being overweight, high blood pressure, and cholesterol.

Good luck on your journey.

Donna_68 profile image
Donna_68

Wow you experience has been full on, I feel for you it’s exhausting riding the heart rhythm roller coaster and it certainly is no fun. I am 52 from Sydney Australia too and I had a catheter ablation last December after which I suffered pericarditis which still seems to cause me quite a bit of discomfort up until June/July. I tried to ease back to exercise too but when I increased intensity the Pericarditis and VT arrhythmia came back. So unfortunately it looks like there’s no choice but to accept a slower lifestyle and a life long relationship with the cardiologist. Sadly a stark contrast to the exercise addictive lifestyle of the past but it’s not the end of the world. I hope your symptoms ease quickly. Take care and know that you are always among empathetic people on this forum.

wilsond profile image
wilsond

One good thing,you seem to be able to get treatment swiftly ,unlike parts of the UK ( 12-18 months wait for ablations on my area)

Kardia I find a useful tool,as I can email my consultant directly for advice and to inform him how I am.Try to avoid temptation to over use though! You can get a little obsessed ....!

Take care

JVPITER profile image
JVPITER in reply to wilsond

Good heavens! I have heard good things about the NHS but maybe I should be super grateful I live in the Land of Aus. My wait for ablation was mere weeks.

I do pay for private health insurance but so do many people (you get a penalty tax if you don't) which probably helps.

I had to pay quite a lot for the anaesthetist but strangely the EP cost me nothing out of pocket.

JVPITER profile image
JVPITER

Hi Donna, thanks for responding. Sorry to hear about the pericarditis.

I feel for you because walking and jogging in the bush is one of my great pleasures and now more important than ever as something I can do to maybe get my AFL/AF risks down. So hopefully I wont have to slow down too much, at least not soon.

IanAnderson44 profile image
IanAnderson44

Hi Jupiter, My name is Ian from Kilwinning in S.W. Scotland.

I have a somewhat similar story as you but my problem was the demon drink!

I lost my beautiful wife (of 48 yrs.) my sister, and two cousins all in the space of 3 months and started drinking whisky like it was going out of style!

One night I started having breathing problems - basically unable to catch a breath and, next morning, went to see my GP who sent me straight to A & E!

My pulse was 176!

I was put on Metaprolol & Warfarin but started having the same breathing difficulty so, for some reason, they decided I was allergic to Warfarin and changed me onto Rivaroxaban.

Problems persisted and it was discovered I was allergic to the Metaprolol!

That was changed onto Verapamil and all was well and I was taken off the Rivaroxaban (and the whisky!) as well so I was on it such a short time, I can't give any advice about side effects.

So, I wish you well on your recovery, do what you're advised and you will be OK.

By the way, just a wee aside, at about the same time as all this, my big cat, Snooks, started collapsing and it was found his heart was stopping so he had to have a pacemaker fitted!

It was such a rare thing that it was in all the papers, a magazine and he even had a publicity agent!

This can all still be found if you Google - Snooks pacemaker.

Good health and best wishes, Ian Anderson

BAICHITRA profile image
BAICHITRA

First of all I must say that you need to be strong to overcome this situation.Secondly calm your brain either by #Meditation or #medication whatever is required

Third take sotalol religiously if possible a pill in pocket approach

Indulge in exercise but do listen to your heart so don't overindulge in it

Rest try to engage your brain in some other activities for example I took up painting which has helped me to calm down a lot...take things in a positive way things could have been worser bit it isint

My best wishes and prayers for your quick recovery .....fight for survival

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