Dronedarone

 So my last blog ended with me saying I had a lousy cold back in May 2022.  This developed into a nasty chest infection (but it wasn't Covid) and meant my return to work was delayed two more weeks!!

I finally got back there on 21 June.  Oh the joy of feeling like the new girl yet again and finding that all the good tasks have been dished out to other people and I'm left with the menial tasks.  But then again, who can blame them?  I've been away as much as there the last three years.... sob!

Even that return nearly never happened when, once again following a knap, I went into Afib on 18 June.  Luckily, after four hours, while stuck in resus in Addenbrookes Hospital it self-converted for the second time ever.  I like it when it does that as the recovery is very swift.

At this stage I contacted my arrhythmia nurses at Papworth and updated them.  They, and my EP, were more adamant than ever that I needed a fourth ablation and I was still more adamant that I did not want/could not face another six months of crippledom.  I asked to be put on amiodarone for a few years (I meant five!).  They countered that they would do it for six months. Finally, on 1 July, at my suggestion, my EP decided to put me on Amiodarone's less toxic cousin, Dronedarone.

But then that following weekend I again went into AFib. To start with my heart rate was only 100 and I decided to sit it out, but it steadily climbed until my husband insisted we went off to Addenbrookes where it happily spiralled up to 183.  It was chaos there - over-busy and under-staffed but eventually I got my 10th cardioversion (didn't even know it had been done when I woke up!)

Meanwhile, the letters authorising the use of dronedarone were swilling around in the system.  Only a secondary provider (i.e. hospital not GP) can prescribe this drug and even that takes a bit of organising as you need blood tests beforehand, and then after one week, two weeks, one month and then monthly for six months and then you also need an ECG at six months.  Luckily, my GP was brilliant and arranged it all straight away.

I had to come off the flecainide for 48 hours and then start the Dronedarone.  So by Monday morning I had just a few hours more to wait when Atrial tachycardia began.  I called the GP to see if the blood tests were okay to start the drug (yes!) and also if I could take the first dose a few hours early.  She wasn't sure so we decided to wait.

The plan had been to take them at work with a first aider on standby (I once was blue lighted to hospital after changing drugs so you can understand my caution!) but I suddenly realised I would not be able to drive if I was in ATach.  So I called work to say I couldn't come in (they must hate me!) and then a friend. At this point I promptly, and uselessly, burst into tears (of fear? of frustration?) on the phone.

He came over and we went to his workshop so I could take the new drug with somebody there in case I did collapse.  He asked how long to wait if I passed out and was horrified when I said "NO! you have to call the ambulance immediately - it's an emergency".  He then said that perhaps an isolated workshop in the countryside was probably not the best place to experiment with new drugs!

Good point.  I half-jokingly said that perhaps we should drive to the local hospital car park and I would take the drug outside A&E.  He thought this was an excellent idea and so we parked in the little park next to the hospital, waited the full 48 hours, ate some food and then I put on my seatbelt (just in case) and then took the new tablet (it's a big 'un!).  'Onestly!

I felt like I was swallowing hemlock!  We then stared at each other for a full 10 minutes while I tried to see if I felt faint (do I?  Am I imagining it?) but I survived and we both felt pretty ridiculous afterwards.

Actually, I told this story to a few people afterwards, playing it for laughs, and to my surprise many felt it was a very sensible precaution! 

AND... so far so good.  Some palpitations but nothing major yet (fingers crossed) and I began running on 23 August.  The only problem I have had for the last few weeks is extreme sleepiness and I just checked my last blood test results and realised I am border-line anaemic due to having so many HHT nosebleeds this last month.

If it's not the flipping AFib its the f***ing HHT!  And the link between the two may be the strain anaemia puts on the heart so it has to be taken seriously....

Bye for now!