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thoughts, ideas for Sick Sinus Disease problem please

whistler profile image
6 Replies

Hi all

thanks for being there, all thoughts welcome on this, and yes I understand its a group of like people suffering and not expert drs etc, so anything said will not come back to bite you. Like the rest of you, Im not a fool.

I have Sick Sinus Disease, with a pacemaker for bradycardia which cuts in if below 60 beats, and at the last test that was over half the time, I have meds for the AF, ablation failed, but am suffering a lot of increased breathlessness if I do literally anything at all, and this is most of the time now, I take diuretics to help keep fluid all at bay but still have excess.

I know SSD is progressive but it seems to have progressed quite a bit in a short time.

I do have moderate COPD but that's well controlled at the moment, and I know its the heart causing breathlessness not the COPD. Oh, haven't smoked for 10 years now.

Im seeing Papworth on Wednesday and wonder what I should be asking them, or suggesting they try to do? Any ideas? Anyone had similar and improved?

Carole

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whistler
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6 Replies
Icenae profile image
Icenae

Hi Whistler. Nice to meet you. I have same as you (19 years) apart from the excess fluid meds. I have a lot of midriff swelling despite not eating much and think its fluid. No meds have ever helped me. I am on bisoprolol and rivaroxaban. Was on Digoxin but was affecting my stomach. Magnesium helped for a while. I am seeing a genetic cardio at Barts Monday re inherited Cardiomyopathy as my brother had same (Restrictive/hypertrophic cardiomyopathy). My daughter now has a fib and she awaits an ablation and a trip to Gen cardio. I have had 3 ablations to date with some success but last one was very traumatic. Not rushing into anymore treatment yet. back in paroxysmal afib about 45% of time now.

I think you may need to query the cardiomyopathy too now. But pace yourself and live your life best you can. Good luck. Let us know what happens at Papworth.

whistler profile image
whistler in reply toIcenae

thankyou for that, I think everyone here copes so well, your all amazing. x

dedeottie profile image
dedeottie

Yes I had one a month after starting on flecanide and then 2 years later where it was discovered that at high heart rates the flecanide was causing widening of QS complex so my dose was reduced. I hope I will be called for another at some point and if not I will be requesting one. X

dedeottie profile image
dedeottie

My post was written in answer to another question but I dont know how to move it there! Any ideas? I tried but somehow managed to report it instead. X

in reply todedeottie

Copy it and paste it in the right place and delete your post here maybe?

whistler profile image
whistler

Thankyou Jo, Ive added a note to remind me at my appointment. x

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