A lot going on with no answers. Firstly having been diagnosed with AF in May, I had my fourth episode whilst in France a couple of weeks ago. Previous to that I was asked whether I would take part in the DOCCLA system which is an extension of a hospital ward apparently where they monitor you at home. I was sent a box containing a Samsung tablet, a blood pressure monitor, an oxygen metre and a thermometer. I have to take readings 3 times a week and fill in a questionnaire and the results on the tablet. Well after the last episode which lasted 11 hours, I had the DOCCLA nurse phone me then a GP from my surgery (bearing in mind I am in France and in a supermarket at the time) asking lots of questions. I had an appointment made to see the GP on my return, which I went to today. Also when I got home there was an appointment letter for the Cardiac Rehabilitation Department. At my appt with the GP this afternoon she reckoned my Bisoprolol dose of 7.5mg was too high, after the doctor at A & E had increased it from 5mg as whilst in AF my heart rate was too high. I have felt very lethargic and no energy as soon as I walk up hill so maybe she is right, but during my time in AF it did keep my HR down to 110/120bpm for most of the time. She also suggested Flecainide but then said I couldn't have it as I have slightly leaky heart valves and a small aneurism (which was possibly there from birth and is not of concern). Thinks digoxin maybe another route but that I'm not suitable for PIP!!! I said I still haven't seen a cardiologist so she will request an appt. but long waiting list. Has no idea why I have been referred to Rehab as that is normally for people who have had a major cardiac event. Have also had a 48 hour monitor which showed quite a few ectopics and sinus bradycardia but no explanation as to whether this is a problem.
After all that rambling I'm just wondering if
1) Anyone else is on the DOCCLA system
2) Is anyone on Flecainide or a PIP with any sort of structural heart problem
3) Has anyone been to a Cardiac Rehabilitation Dept. and what is it?
Hope all or at least some of this makes sense, but feel as if there are too many things going on and I am not getting any solutions.
Thanks for your time.
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Retired010
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Yes, Flecainide is contradicted if your heart is not structurally sound, however the definition of "structurally sound" is best made by an electrophysiologist (ep) or a well versed cardiologist and not a GP. At least in the US, all this is way over the head of most GP's. In other words, just because your GP tells you that you cannot use this or that, doesn't mean an ep will agree.
As to the bisoprolol, it often comes with a lot of side effects. It's very effective in getting your rate down during an episode, but often not needed between episodes. Something to discuss with your doctor.
Agree, but don’t think Gp was very knowledgeable. At our surgery we don’t have allocated GPs and it’s whoever is on duty. Hope to see a specialist within the not too distant future. I was really hoping for a PIP as apart from ectopic palpitations don’t feel too bad but that doesn’t seem possible.
Sorry you feel so low but AF is a long journey. Sorry again I have never heard of DOCCLA so it must be something new they are trying in your area.
Flecainde should never be given if there are any cardiac defect regardless of how minor so your GP is doing the right thing.
I agree re cardiac rehab which I suspect is an error in the system.
Why not go to our main website- Atrial Fibrillation Association -and read up as much as you can as knowledge is power. Then ask any questions here and we will try to help.
Lucky you. When I asked years ago was told not for you with AF . only heart attack victims. Not even after my cardiac arrest from PEA was it ever suggested.
Pulseless Electrical Activity. The electrics are firing but the heart muscle is not responding. All looks fine on the ECG but the heart is stopped and no pumping going on. Used to be called electro mechanical disconnect. Extremely rare. Very lucky it was spotted in time and CPR commenced . Took four minutes of rib cracking plus direct injection of adrenaline to re-start.
Why did you have cardiac arrest, what exactly is the cause? I have mitral and tricuspid regurgitation, but it's insignificant and they gave me Flekarid and Bisoprolol for my arrhythmias, but after a few months I stopped taking Flekarid because it didn't help me with my SVES and VES (heart skipping, extrasystoles), which I still have today. It even seems to me that they give me an acceleration of the rhythm for a few seconds. It only lasts a few seconds and passes, but it bothers me a lot and at that moment it suffocates me and makes me feel sick. The doctors say that there is nothing dangerous and that I should get used to living with it. However it bothers me a lot. I'm afraid that there is something that they may not have been able to discover.
Oh well done. I looked it up and found nothing so assumed it was my local hospital. Having only been on it 4 weeks they messaged this morning to say they only want readings once a week now. I didn’t think enough at the time to ask more questions about it. I just went along with it all. Good that they are proactive though.
I have to say that sounds like a very innovative and effective system and I think the way all ‘health’ systems are or should be heading.
In UK Cardiac Rehab is normally an exercise routine where you are closely monitored by a trained PT whilst you exercise. My 89 year old husband goes every week and really has helped strength and energy which AF saps.
That sounds interesting, although I think I am only feel washed out because of the Bisoprolol. I walk at a good pace on the flat just don’t give me any hills!! Very difficult in Somerset!
I am on flecainide and have mitral and tricuspid leaking valves as well as loads of other things wrong with my heart. Personally I have found it really good, but everyone is different
Coincidentally my GP phoned me yesterday and I think he must only be in his 40s and he mentioned that he is on the same medication as I am
Many thanks for that Pat. I've seen many comments from people on here who take flecainide and various PIPs and from what I understand most people who've AF have some sort of minor heart issue, so it did seem that it would be possible for me to take something other than Bisoprolol. have just found out that appointment of Friday for cardiac rehab covers all sorts and there is a specialist nurse that covers medication and can prescribe so it will be interesting to hear what she says.
My doctor recommended nebivolol instead of bisoprolol. Said it does not cause breathlessness. I am on a very low dose, 1.25mg but take extra when I have an episode. So far seems fine. Can walk, garden etc without being tired/breathless.
That's interesting. I did a comparison of nebivolol and bisoprolol and both come up very similar but as you say, several people report having less side effects on nebivolol. I will mention it tomorrow at hospital appt. I think other possibility, at least for me, is I naturally have low BP and HR so any beta blocker is going to make me feel worse, hence my thoughts on flecainide and PIP.
I just had an echo and have 1+ regurgitation in mitral valve and tricuspid. Both my EP and my surgeon who performed my MiniMaze said that it is completely normal and absolutely nothing to worry about. I took Flec as PIP before my MiniMaze and it worked great.
Many thanks. My echo showed - "very mild aortic and tricuspid regurgitation" and a "interatrial septum aneurysm that is bulging into right atrium with no evidence of shunt". Apparently the latter may have been there since birth. My GP considered this all to be a structurally defective heart that was not suitable for anything other than bisoprolol or digoxin. I definitely need to see a specialist.
Interesting. The GP I saw didn’t realise that as she would have definitely prescribed it until we started talking about my echo and then she tried to suggest digoxin but we settled on a reduced amount of Bisoporol. Not happy but have this cardio rehab tomorrow so will see what happens then.
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