Mended Hearts Open Forum

Hello everyone,

I had a cardiac ablation and an extensive and aggressive epicardial ablation done at the same time this year to treat inappropriate sinus tachycardia, a condition where my resting heart rate was around 130-140bpm.  I'm an extremely active person, a typical day in my job involves hiking around 9-12 miles, in my spare time I enjoy rock-climbing and kayaking along with working out.  A few months before diagnosis I noticed I was getting very winded with minimal exertion and 3 months later I was passing out regularly forcing me to take medical leave from work while also abstaining from all physical exertion.  My surgeon recommended an epicardial ablation as for my diagnosis a cardiac ablation alone has a very low long term success rate.  Although receiving a pacemaker after severing the sinus node would have had the greatest success rate especially long term, I was refused due to my age unless I went through these procedures first. 

I'd desperately like to connect with someone who's had a heart procedure near my age (31yrs old), or who's been through an epicardial ablation as it's such an uncommon procedure. The only information I can find is second hand, but no one with first hand experience about what recovery is like at my age or what a new normal might look like post procedure with my lifestyle.  Even my doctor remains vague and unsure as this procedure is so uncommon.  At 2 months out I struggle with acute pericarditis that is so debilitating I can't manage a short slow walk even with strict bedrest and anti-inflammatories.  I repeatedly go into atrial flutter clocking 180-240bpm until I get cardioverted (multiple times in a week), and have tried Amiodarone but discovered I'm allergic. To top it all off my heartrate no longer elevates appropriately with activities like walking or traversing stairs so I'm back to panting and blackouts.  I know things can take time, but I expected to see some improvement even if in a small or gradual way by month 2 of a predicted 3 for healing time.   All of this to say, is there anyone out there like me that would share their story?  

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Thecla S
Lakewood CO
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carlo pinini
Engineer
TDLS
Miami FL
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It seems that this forum is DOA, even reaching out to a supposedly active local branch in a major city turned up nothing.  It could be a great resource but functionally is the remaining storefront of a closed business

Hi Tec, sorry to hear about your heart condition and the frustration finding someone with similar experience.
I suggest joining one of the Young Mended Hearts groups, there are monthly meetings of heart patients via Zoom, in roughly their 20s through 50s. You may find someone in those groups who has had a similar procedure and recovery. If you’re interested you can find them on Facebook and follow for meeting information and contact info.
Young Mended Hearts of Northwest Washington (west coast group)
Young Mended Hearts of New England (east coast group)
If you’re interested you have problems reply back and I will help with contact info.
Wishing you well in your ongoing recovery.
Peter


Original Message:
Sent: 5/13/2025 5:07:00 PM
From: Tec
Subject: RE: Epicardial ablation for inappropriate sinus tachycardia, 31yr old

It seems that this forum is DOA, even reaching out to a supposedly active local branch in a major city turned up nothing.  It could be a great resource but functionally is the remaining storefront of a closed business

Tec,

You clearly are a highly intelligent person describing, in two detailed paragraphs, a heart condition, treatments, and life circumstances that you acknowledge is uncommon, which I suspect is an extreme understatement, and then ask to hear from someone on this forum having experienced similar issues.

Why would you then be surprised at not receiving a response, and not recognize that there may be nobody on this forum who has experienced the issues that you have experienced?

Just so you know, after seven active years on on this forum, following my heart attack and open heart bypass surgery at age 67+, most of the people posting here tend to be older bypass or valve replacement surgery or stent survivors like me, or younger people with congenital heart conditions and surgeries often beginning in early childhood.

Somewhat off topic, as a former, gymnast, wrestler, and competitive long distance runner, now reduced to being a 75 year old mostly calisthenics based gym rat who people your age at my gym address as sir, I am very interested in knowing what type of job had you hiking 9-12 miles a day?

I wish you improving health.

Ira


Original Message:
Sent: 5/13/2025 5:07:00 PM
From: Tec
Subject: RE: Epicardial ablation for inappropriate sinus tachycardia, 31yr old

It seems that this forum is DOA, even reaching out to a supposedly active local branch in a major city turned up nothing.  It could be a great resource but functionally is the remaining storefront of a closed business

Tec, I agree. I have never found this platform to be user friendly. However, the primary purpose is to support heart patients and their caregivers. I had heart surgery in 2001 and started visiting heart patients after that. It has been very rewarding and if not for back issues I would still be doing it at 84.
Have you tried find a chapter on the website? It is somewhat hidden, but a good resource for finding your way to local help. If you happen to be in the Orlando area, pm me as our website is not up to date.
Thank you for your interest and patience.
Gary Price

Sent from my iPad


Original Message:
Sent: 5/13/2025 5:07:00 PM
From: Tec
Subject: RE: Epicardial ablation for inappropriate sinus tachycardia, 31yr old

It seems that this forum is DOA, even reaching out to a supposedly active local branch in a major city turned up nothing.  It could be a great resource but functionally is the remaining storefront of a closed business

Original Message:
Sent: 5/13/2025 5:07:00 PM
From: Tec
Subject: RE: Epicardial ablation for inappropriate sinus tachycardia, 31yr old

It seems that this forum is DOA, even reaching out to a supposedly active local branch in a major city turned up nothing.  It could be a great resource but functionally is the remaining storefront of a closed business

I haven't had an epicardial ablation myself, but I was treated for a different arrhythmia (AVNRT) in my early 30s and went through a standard cardiac ablation. Even with the more common procedure, recovery had unexpected ups and downs, so I can only imagine how complex and uncertain things must feel for you right now.

It's frustrating when recovery doesn't follow the timeline you're given, especially when you're used to being active. I hope your doctors can find a better approach to manage the pericarditis and arrhythmia soon. Going through multiple cardioversions in a week must be incredibly tough on your body.

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laura bairdd
Office Clerk
Johnson & Walker Logistics Inc.
SC
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Try reviewing my website that I put together after 2 heart attacks and quadruple bypass in 2016.

You might find some good tips for ongoing recovery there. Diet and exercise 

and rules for recovery. 77 and still going strong!

Let me know your thoughts. 

John

Www.betternowthanks.com 

 

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John Myers
North Granby CT
(860) 413-9209
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Original Message:
Sent: 06-10-2025 10:35
From: laura bairdd
Subject: Epicardial ablation for inappropriate sinus tachycardia, 31yr old

I haven't had an epicardial ablation myself, but I was treated for a different arrhythmia (AVNRT) in my early 30s and went through a standard cardiac ablation. Even with the more common procedure, recovery had unexpected ups and downs, so I can only imagine how complex and uncertain things must feel for you right now.

It's frustrating when recovery doesn't follow the timeline you're given, especially when you're used to being active. I hope your doctors can find a better approach to manage the pericarditis and arrhythmia soon. Going through multiple cardioversions in a week must be incredibly tough on your body.

------------------------------
laura bairdd
Office Clerk
Johnson & Walker Logistics Inc.
SC
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