recently diagnosed with HF preserved ejection and still waiting for my cardiac MRI. Probably caused by LVH. Last couple of days my legs have been weird and I have to sit down immediately as I think they would give way.
My GP has put me on dapa and a water tablet in addition to my tablets with I take for high BP. My cough is much improved and I’ve been desperately trying to lose weight.
Anyone have any thoughts. All this is so new to me
First of all, sorry to hear your problem and the anxiety you must be feeling. My HF was different from yours, but was a shock to me. I was feeling a lot of fatigue and couldn't walk up slopes. Just like I'd run out of energy. This was after years of AF and bradycardia for which I had a pacemaker. It turned out I had pacemaker dissynchrony from a dual lead pacemaker and the EF was low -35%.
I had a new bi-ventricular (3 lead) pacemaker fitted. And now along with BP meds and Apixaban, I take Dapaglaflozin (like Jardiance it's a drug which improves heart function ) and Spironolactone (potassium sparing diuretic). Are these what you have been prescribed?
Now I feel much better. EF is back up to normal. I know our cases are a bit different but HF is very treatable and the drugs do work. One doctor said to me Heart Failure should be called Heart Insufficiency which is less scary - and is in fact what it's called in France and some other countries.
Hi Coco51,I'm currently going through similar to you, I had WPW enduring years of palpitations, had an ablation to resolve this but unfortunately the pathway that needed ablated was very close to my AV node which also ablated so ended up with total heart block and a 2 lead pacemaker back in July 2022.
Following on from this I developed pacemaker dissynchrony from the dual lead pacemaker and the EF was low - 40% in addition to having persistent AF.
I had a biventricular pacemaker fitted 7 weeks ago but for some reason my AF is more prominent has has worsened which is affecting me daily.
Due to have a cardioversion in 3 weeks.
On ramipril, dapagaflozin, apixaban and bisoprolol
After reading you're post I was curious to ask if you still have AF?
Hello. Sorry to read about your problem. The short answer to your question is yes. I do still have AF. Long answer follows.
My AF burden was 14% at the latest check.At the previous check it was only 5%. But has been as much as 25%. It's a right pain! It's not persistent at the moment but was persistent before my ablations 8 years ago.
Although my new pacemaker procedure (just over a year ago) did not go well and took nearly 4 hours - after it I feel much better. Even so, 2 months after it I suffered a very bad AF episode lasting 24hrs. Couldn't sleep. Peeing gallons. I was very stressed and put it down to irritation of the heart from the new PM procedure. Like a blanking period.
Since then subsequent episodes have been shorter, slower and milder, and if they bother me I take an extra Bisoprolol. Apparently I had another 24hr one in October but didn't really suffer badly with it. I used to take Flecainide which worked well, but the EP has said it's no longer advisable.
I've had 2 ablations. The AV node has not been ablated and I don't have WPW, although do have some heart block but it's not total. I might ask for another ablation. Not sure.
I am puzzled by your problem because I thought when the AV node is ablated the AF doesn't affect the Ventricular rate, so any AF would be asymptomatic? Was the AV node fully abated?
Best wishes
Yes AV node totally ablated, pacemaker dependant with 3rd degree complete heart block.From what I understand my HR is steady due to being paced but the AF is still present and I feel it in the atrium, I think the PM corrects this before the signal is sent to the ventricals.
Since I had the biventricular PM fitted my AF has worsened and literally knocks chunks out of me, I have a remote monitor next to my bed and the pacing clinic is aware I'm in persistent AF which I have been since I had the dual PM fitted in July 22.
Next on the list is a cardioversion early Dec if it's unsuccessful it's been mentioned that I may need another ablation or stronger meds (Amiodarone) but prefer not to take the Amiodarone as I have taken it before and it messed with my thyroid.
Curious,you stated your AF burden was 14% and as much as 25% I have never been given these stats refering to my issue of having AF, how is the AF burden measured?
Hi. The AF burden is something they tell me at St George's pacing clinic at my 6 month checks. If they don't offer I ask for it. How is it measured? There seems to be a facility on the Biotronik equipment which adds up the duration of every AF episode long and short and expresses it as a percentage of the total time since the last check. So atm I am in NSR 86% of the time.
The EP and HF consultants also refer to it at my 6 month or annual appointments. I think if it gets worse it can cause damage - hypertrophy or cardiomyopathy - then they offer another ablation or amioderone or whatever.
How do you experience AF in the atria? I do feel a fluttering over and above the Ventricular chaos, but the irregular HR is the worst. Fortunately the rate seems to stay under 100 bpm at the moment.
Do you have a home monitor?
Hi, so you will probably be aware that AV node ablation does is sever the electrical connection between the top (atria) chamber of the heart and the bottom (ventricle). Which means my heart is pacemaker dependent on making the bottom chamber contract BUT the atria continues to do its own thing and if it wants to go into AF - it does and i will feel it. The difference is that my pulse will is steady and regular and I do not have the irregular beat of someone who hasn’t had the AV node severed.Symptoms wise I feel the top chambers pounding fast, get dizzy, shortness of breath, fatigued, weak and unable to do anything physical, it's persistent and worse at various times through out the day, makes me tired and I often just give in and just go to bed.
Yes I have a home monitor, pacing clinic is aware of the AF hence the cardioversion early Dec.
Didn't realise there was a way of measuring the severity of AF but know I do I will be asking for my AF burden .
That's interesting. I was advised by one EP once that an elegant solution to my problem could be AV node ablation. I declined and hearing your account I'm glad I did. (Although I appreciate you had no choice in the matter). If the atrial fibrillation can still be felt even if the ventricular beat is steady that's bad news.
I am thinking of another ablation. Cardioversion wouldn't work for paroxysmal AF. When my AF was persistent one cardioversion lasted 3 months. The second one lasted only a day! So not a solution for me. I hope yours works. Not long to wait now.
It will be good to know what your AF burden is. I find the longer I ask questions in the pacing clinic - keep them talking - the more I find out
My friend had HF and COPD diagnosed over a year ago. He has got his weight right down and is now feeling far better all round. He still vapes, no matter what we tell him.
Steve
In the summer I was also diagnosed with HFpEF following an ECHO. I also have left anterior hemiblock. However when I saw a cardiology consultant in October, he said that the computer had come up with a score from the ECHO that led to the diagnosis, but according to all the parameters he looks at I do not have heart failure. So I would just say wait to see what your cardio says after your MRI. Mine also said that he was happy for me to stay on the dapagliflozin I’d been prescribed - unless I get any side effects - because there is some evidence that it can help with AF.
Thank you!
Hi Visigoth I’ve been for my first appointment but didn’t see cardiologist but a HF specialist nurse. She said they now have a meeting and the cardiologist will decide whether I need MRI. Is this normal procedure? She said I was on the right meds for HFpEF.
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Paroxysmal and permanent Afib
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AFib and Antibiotics
AFib and Cardioversion
