Question: Dear Dr Iliri,
Of course, as you well know, I am filled with terrible anxiety about the possible recurrence of my cardiomyopathy. I had a follow-up with my EP recently and he did an EKG which didn't show any PVCs, but it was the standard 15 seconds or so. My regular cardio recently did an EKG for two minutes which also showed no PVCs. However, I do feel one on occasion, in fact I've felt two or so tonight, so probably I'm having more than I can actually feel. My EP said that until it hits 20,000 a day, there is absolutely no danger, yet I have read that as few as 4000 or even 1000 PVCs per day have been shown to possibly cause heart weakening. My post ablation holters have shown 20, then 900 during a bad day, and then 50 PVCs, but I have not had Holter in over 6 months and based on my test results neither EP nor regular cardio thinks I need a Holter at this time. I am worried that I may be having many more PVCs than I can feel. Normally I can feel each one, but of course, I worry. I have become someone who worried.

Would you say the research shows that less than 10% of PVCs are inconsequential, even with my prior history? I don't feel more than a couple day but I feel perhaps it could be a hundred or more that I don't feel. Even if so, would it mean nothing?

I'm embarassed to need so much reassurance. Again, you laugh, but I wish I could just have a robot heart or a home echo- something to make me feel secure that my heart is going to stay strong and that I can live my life as before. I am just afraid that if I believe I am ok and embrace life and health, that this ailment will come back and I will have to adjust once more to the idea of having a short life. It is coming upon the anniversary of my diagnosis and I am having many bad memories.

THank you so much.

XXXX

Dear Dr Iliri,
So would 500 be harmless? 900? 4000? I know I am not having thousands but on the day my holter showed 900, I estimated perhaps 150-200. Now I think most days I feel anywhere from none to maybe 20 but unlike before, my PVCs are quite "soft" and are quite hard to notice although I do think I feel most of them. I guess carvedilol makes them less noticeable. My cardio says less than 10% will do no damage, my EP says 20,000. Is this true? Would even 5000 do me no harm? I am anxious (naturally) as I was scheduled for a 6-month holter and EP decided it was unnecessary. I am now not scheduled for holter until 6 months after total stoppage of carvdedilol which may be 8-12 months. I am just worried I am having more PVCs than I think. It is very very hard to control my fear when I feel one as they caused my cardiomyopathy.

I wish I could go back to believing PVCs are harmless and that I am ok.

Thank you so much, dear Dr Iliri. I hope you are having a wonderful weekend.

Thank you so much Dr Iliri,
You are so helpful and it's quite remarkable that I have managed to stay out of the hospital for over two months now and I was before going every week I was so scared. And it's quite an emotional time as it was one year ago I was diagnosed and told by my first doctor I would die within a year unless I was able to get a heart transplant. I still hear his voice every day.

My cardio, knowing my anxiety is moving my echo scheduled for December to November as I will be traveling internationaly for work and am quite nervous about the long flights and being far away from doctors who know me and my history. It will be about 4 months since my last echo which showed EF 65-70, but 5 months since EF on echo was 55-60. Do you think 65-70 was actual improvement (7 months after ablation) or just that it was a different tech and machine? Doesnt it mean that perhaps yet another tech could do echo and EF shows 50? I dont understand how it can be so variable in the normal range but not dip into the "low EF" category. I'm already so nervous as this much time has never passed berween echoes. Are you quite sure I dont need to worry?

Thank you so so much dear Dr Iliri.
XXXX

Dear Dr Iliri,
Thank you again, for all your wisdom. My echoes since ablation 10 months ago have been showing EF 55-60, with calculations showing 60-63 and nuclear stress in XXXXXXX showed EF 63. My last echo, in July, 7 months after ablation is the one which cardio said was EF 68- he said higher than 65- closer to 70. The echo which showed 68 was performed by my regular cardio who read my initial echo last October and diagnosed me with cardiomyopathy. It was first echo he had done on me since the bad echo. My follow-up echoes were done by EP and the one done 3 weeks before last echo was performed by a doctor in my EP's practice I had never seen before.

So do you believe EF was not fluctuating and that 55 and 68 didn't mean there was actual change in EF? Just tech and dr being different?

When I last saw my cardio last month he said he could tell from looking at my face that I was not retaining fluid. Is that true? Attaching photo taken just now. When I look at old photos, during my illness, I didn't seem to look puffy but then my weight was always stable, but I had the shiny shins and the cough and the high proBNP.

I know I just need to move on. I think with a couple more normal echoes, I will be ok.

But you feel quite sure there won't be EF changes over last three months?

Thank you so much, dear Dr Iliri.

XXXX

Dear Dr Iliri,
Again, thank you so much for your ongoing help. You are so kind and so knowledgeable- I wish it was easier for me to just accept that I have recovered and be happy and grateful.

I know you don't think it's necessary or helpful to
have frequent testing, but do you feel quite sure that if I have an echo soon, it will still
Show a healthy heart? I see more doctors than I should and I will soon make sure I see only one, but for now I am too afraid to go an entire year without testing. The cardio I will see in two weeks has done an echo on me before and it was EF 60 about four months ago. So she knows my history and has a prior echo to compare it to when she does another echo.

You think even with small drop in EF- say to 45-50 would present with symptoms so I would know something was going on?

I am hoping that soon I can put the cardiomyopathy in my past and move on with a healthy, happy life.

Wishing you a wonderful weekend. Thank you so much.

XXXX

Dear Dr Iliri,
Thank you so much for your advice and knowledge. Yesterday I had an incident during work which scared me. I have a light pink scar from a 2nd degree burn about 6 months ago. Yesterday I noticed the scar was quite red although nothing had happened, no injury or irritation, no heat or cold expoaure, I was just working quietly. After a few minutes it was pink again. It didn't hurt but of course I immediately worried that perhaps there was some heart/circulation/blood flow issue which caused the scar to turn red briefly. It hasn't happened again. Could that possibly be a cardiac related issue?

I am scheduled for an echo and checkup next week. It has only been 3 months but as last two echoes were so different (55-60 in early July, and 65-70 in late July) I'm worried this time it could be 50-55 or even lower. I understand everything you've told me about how interpretation can vary so much, but it seems that 55 to 70 in 3 weeks seems extreme. This dr has performed echo on me before and it was 60- in May. Seems like most consistently, as with stress echo, EF is about 60-65. Are you quite confident nothing would have changed in 3 months?

Thank you so much for your continued help and kindness. No ER now for 2 /12 months! Had been going once a week before that. I still feel tempted to go quite often but you are helping me a lot.

Many thanks,
XXXX