thoughts, ideas for Sick Sinus Disease problem please

[whistler]

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

[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 in reply to Icenae]

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

[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]

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

[Hidden in reply to dedeottie]

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

[whistler]

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