Adventures of a Racing Heart - Afib Adventure number 2! (AUG 2019)

Adventures of a Racing Heart - Number 2!

So, after the first Atrial flutter in 2015, I was on Flecainide permanently.  I had the paramedics out a couple of times with fast HR but it seemed these were false alarms but by 2018 I was beginning to have more and more issues:

  An ambulance called in October 2018 diagnosed a panic attack

Passing out in a pub in 2019 was put down to a faint

A visit to hospital the same year with an irregular heart beat was diagnosed as “ectopics”. 

Meanwhile I was training for an 18.5 miles cross-country race (done!) and a cross-country trail marathon (missed it with a cold a few days beforehand).   I wore a 48-hour Hotter monitor in June 2019, but had not got the results when I went off to the USA in late July.

The last few days I was out in the US, I began to feel extremely tired, one evening I nearly passed out and my Garmin kept showing a Heart rate of 100.  We thought it was the ectopics confusing the HR (Heart Rate) monitor.  I was fine for the first few days after we got home and then I ran/walked for my first session since pre-holiday.  Halfway through I felt really unwell and walk/jogged back to my car.  Felt a bit unwell all evening and the next day so I booked to see GP.  He ran an ECG and diagnosed Atrial Fibrillation (Afib).

I was admitted to my local hospital but there was no room on the cardiac ward so I ended up on the ward with all the elderly ladies.  I was told I would be given an electrical cardioversion (DCCV), but they spent so long trying drugs that they missed the 48-hour window (after which the risk of a clot becomes too high and you need four weeks of anti-coagulation treatment).  After 12 days I was discharged with the HR (allegedly) under control. They felt a HR of 88 was controlled, but my usual heart rate was 48-52 at rest so I felt awful and could barely walk. 

I was promised a DCCV after four weeks.  This is because the HHT makes it difficult for me to tolerate the anti-coagulants (due to heavier nosebleeds). During this period, I also attended A&E with chest pains, but after they checked me over, they said it was “just” my heart hurting from beating so hard and so irregularly for so long.  They suggested I tried to get the DCCV asap!

An attempt to do so revealed that far from being close to getting zapped I was looking at a wait of THREE months.  The arrythmia nurse was lovely and said he would try to fit me in sooner when he heard about my bleeding issues (HHT).

Still feeling very unwell, I visited my GP (doctor) and he wrote to the cardiologist who said to alter my drugs from flecainide/betablocker to verapamil…

Then it got really exciting….  I took the first verapamil Saturday morning and within a few minutes was passing out.  I eventually went unconscious for a few minutes.  My poor husband called an ambulance which dosed me with adrenaline and took me back to the same local hospital where I was again admitted to the Old Lady Ward.  More drug cocktails were tried all of which made me feel ill, but at least I finally got to the Cardiac Care Unit.  After 10 days in total, I was given a TOE (Trans-oesophageal echocardiogram) to check for a blood clot in the heart and then the next day my second DCCV.  Something they should have done five weeks earlier.

I was then discharged on amiodarone (an anti-arrythmia with horrid side effects).  Another GP was unhappy with that and swapped me back to flecainide with a beta-blocker.  She warned me not to let my HR go too low i.e., below 50.  So, taking that (especially after the Verapamil collapse) felt like taking a cyanide capsule.  We sat up watching my HR gradually get lower and lower until I got too tired and went to bed.  I wore my Garmin with the alarm set at 40 bpm and it just kept going off.  I knew I wouldn’t sleep like that (I was not even sure I WANTED to sleep in case I didn’t wake up!) and eventually I went back to A&E AGAIN with a HR in the 30s!  They felt it was just the Amiodarone still in my system and the new drug working as well forcing HR low.  By this time, it had stabilised and I was released home!

Following these 5.5 weeks in Afib, I was so weak I could hardly walk; I had lost so much muscle mass and I felt dreadfully weak and tired.  It took me about three months before I felt well enough to run (when I say run, I mean walk/jog) again. In the meantime, I was referred to Royal Papworth Hospital for an ablation.

I was told I was a good candidate for an ablation being as I was so young and also because anti-coagulants are not a good fit with me due to my HHT (see my other blog page). I was told the waiting list was about six weeks and I would be seen about mid-February of 2020……

To be continued!

 

Terminology

Atrial fibrillation (AF or AFib) and Atrial flutter (AFl) are two different types of heart arrythmias.  

Lone AFib or AFl means there is no structural reason for it that is, nothing obviously wrong with the function of the heart.

DCCV - Direct Current Cardioversion.  Basically, they stick pads on you and zap you with electricity.  This stuns the heart so much it stops beating.  Hopefully, it then restarts beating (otherwise you are in BIG trouble) and, better still, it beats with a proper rhythm (NSR).

NSR - Normal sinus rhythm - what most people have! It's doing what it should, a nice regular lup-doop sound.

999 - emergency services phone number in the UK.  Same as 911 in USA or 112 in Europe.

Flecainide - an anti-arrythmia drug.  A major side-effect is its tendency to cause further arrythmias.  One of the only drugs I seem to tolerate well. 

TTRMP - I made this up!  Time To Recovery Medical Profession 

TTRRL - I made this up too! Time To Recovery Real Life!

GP – family doctor (General Practitioner)

TOE – trans-oesophageal echocardiogram (to check for a blood clot in the heart) which could cause a stroke).

HR – Heart Rate