What a day

[Kaz747]

I saw my EP this morning and he’s taken me off Amiodarone (yay!). I’m not sure how I’ll go when it eventually gets out of my system. I’m still on Digoxin and Atenolol but even the 3 drugs together weren’t controlling things fully. He was discussing the prospect of another ablation. This will be number 4 but only the second PVI. He said when the body fights so hard to heal itself some of the ablated tissue reconnects so it would be a bit of a ‘tidy up’. I’m having a gastroscopy next month to see what’s happening with my esophagus and stomach and I’m also meeting with a sleep consultant. I had a sleep study a couple of weeks ago but I had bronchitis so it wasn’t optimal conditions. We’ll make a decision around whether to go ahead with another ablation when I see him in 5 weeks.

Then this afternoon I went to the funeral of our friend’s 23 year old son. That was very tough and very emotional and I could feel my heart jumping around all over the place. My problems pale into insignificance compared to my friends though. Tragedy puts things into perspective.

[Hidden]

My " argument" with my cardiologist regarding my daily rhythm med is how do you know whether its the med or my own heart keeping me out of a fib? So to shut me up, we did an experiment as I wanted to stop my flecainide and go back on pip. So he agreed to run a 30 day heart monitor. I stopped the flecainide. In 30 days, no a fib showed up. That was 3 months ago I stopped the flec, so far so good. If a fib was more frequent, I will happily go back to daily flecainide but so far 11 mo since Ive felt any a fib, Im hopeful but realistic.

Here is hoping normal sinus rhythm is on your radar everyday💜

[jeanjeannie50 in reply to Hidden]

Hope you're cured now Hoski!!!

I have those same thoughts, about medication and how good it is, and wonder is it the pills or my natural body responses dealing with AF. In June last year after 8 months of constant AF, I stopped my Flecainide and Metoprolol. The result was that in about 24 hours my heart was back in normal sinus rhythm. Unfortunately, my AF came back after about 4 months and stayed constant until my cardioversion last week.

I still wonder whether I shouldn't take any pills when AF strikes and see if my body can get me back into normal rhythm. One day I may be brave enough to try.

Jean

[Hidden in reply to jeanjeannie50]

Yes, it would be much easier if we had crystal balls to see when a fib is planning its next event! Flecainide was a good drug for me so if I find I need to take it regularly, I wont fight it

[jeanjeannie50 in reply to Hidden]

Same here.

[wilsond in reply to Hidden]

Me too,saw my gp today and we agreed a slow withdrawal of daily Flec. Xx

[Hidden in reply to wilsond]

Keep us posted on how it goes. Mine had me just stop, a little creepy feeling but Im still breathing!

[wilsond in reply to Hidden]

Will do! Xx

[Maura5]

Hi Kaz747, I’ve just had my 2nd ablation which was a tidy up and so far so good one week in, unlike the first in July where I had regular episodes almost immediately afterwards. My EP is keeping me on amiodarone 200mg once a day for the three month blanking period and I’ve been taking it since September. Can I ask how long you have been on it for? Luckily I’ve had no side effects ..... yet.

Sorry to hear of your friends sad news, it certainly puts things in perspective.

Maura

[Kaz747 in reply to Maura5]

Hi Maura, I was on Amiodarone for 2 months. A recent blood test showed a raised level in my liver function (one of the enzymes was supposed to be below 35 and mine was 194), I had numerous rashes and with having lung problems (which 4 doctors said looks more like bronchitis than a problem with the drugs) it was decided I was better off stopping. I’m going for a CT scan on Thursday to see what else is going on with my lungs.

[Maura5 in reply to Kaz747]

Good luck 😉

[Ianc2 in reply to Kaz747]

One of the side effects of amiodarone is a stiffening of the walls of the lungs, one of the reasons why it has gone out of fashion.

[Ianc2 in reply to Maura5]

September + 3 months = Dec. Time to give his secretary a bell?

[Maura5 in reply to Ianc2]

Hi, I saw him on Monday, he wants me to stay on it until April.

[Kaz747 in reply to Maura5]

Have you had any blood tests Maura?

[Maura5 in reply to Kaz747]

Yes, of every variety! Eyes checked too...

[Kaz747 in reply to Maura5]

That’s good

[meadfoot]

Sorry you have had such a tough day, 23 years old how awful. Big hugs to his family and to you too.

Interested re your gastroscopy. I have just been through lots of gastric investigations this past few months and have now transferred to London as my local hospital has not come up with a definitive answer. Now have another five scans and tests to travel down for but I can't go on like this.

Good luck with your heart meds and tests.

[Buffafly in reply to meadfoot]

😢 Sorry you're still suffering.

[Kaz747 in reply to meadfoot]

I’ll let you know what they find, if anything. I’m seeing the same gastroenterologist I saw 7 1/2 years ago who diagnosed my sliding hiatus hernia.

[jeanjeannie50]

Oh Kaz, you certainly have had an awful day! I'm so sorry to hear about your friends son. Yes, tragedy like that certainly does pale our problems into insignificance. Did your heart calm after you returned home?

Good news that you could stop the Amiodarone, let's hope your liver enzymes soon return to normal again.

Digoxin really didn't agree with me, it made me feel spaced out and weepy. While driving with a friend she was horrified at my reactions when the sun glared in my face, I just stopped in the road with traffic behind me. Fortunately she wasn't afraid to voice her opinions that I wasn't right and I soon came off of that drug. Someone else I know with AF gets on fine with Digoxin.

Best wishes

Jean

[Kaz747 in reply to jeanjeannie50]

Thanks Jean. Yes things settled later in the day. We ended up leaving the wake quiet late. There was talk of staying and ordering pizzas but I hadn’t brought my evening meds with me and I was the designated driver so I said we had to go. According to my Fitbit I had nearly 8 hours sleep last night which was good after such a draining day.

[Peddling]

Hi Kaz, what a sad day. I think the young have an exceptionally tough time these days - as do their concerned parents, but that’s another topic. I had no problem with digoxin, just didn’t like the idea of it and felt it had been prescribed as part of the ‘starter kit’ for zapping af by a not particularly well informed cardiologist. If my latest cardio recommended and convinced my of its necessity and benefits, I would give it a go.

[Kaz747 in reply to Peddling]

Yeah, it’s certainly not a first line drug. I’ve been on Verapamil then Flecainide then Sotalol to which Digoxin was added then taken off Sotalol when the maximum dose wasn’t holding things. We haven’t Fat drug yet that will keep things under control but at least Digoxin slows things down. When I was put on it last time I was in hospital the cardiologist said the aim was to keep my heart rate under 110 when in AF and it’s mostly doing that.

[wilsond]

Oh......my heart goes out to his parents.My youngest sons girflfriend died at the same age,the most awful funeral i have ever been to.Not long after my mum died....my heart was letting me know too.

Lets hope for better times soon.

Looks like things are moving slow!y forward for you,slowly slowly catchee monkee?

Sending you thoughts tonight.....xx

[Kaz747 in reply to wilsond]

Thank you xx