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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 days ago | Replies (1089)Comment receiving replies
I guess I introduce myself here. My name is Jen. I am 72, only discovered I have HCM in 2012 after I had a heart attack right after a kidney transplant. No other symptoms. I am not out of breath, ejection rates are very good, but blood pressure, pulse are high, and I have AFIB. Today, UCSF says I must get the AV Node Ablation. I understand that if my pacemaker fails, I will then die.
Very depressed. I feel like somehow, I failed. I was always an athlete, ate well, don't smoke or drink and am light on caffeine. I can barely bear the idea of going to the hospital to have my heart function destroyed.
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Hello Jen, @jih123 , and welcome to Mayo Clinic Connect.
Gosh...you certainly have had a tough journey, haven't you? You have been through a lot!
And you have comorbid conditions that require more than one specialty.
It is concerning and worrisome being told that you need to have a procedure (AV node ablation) so no wonder you are feeling depressed.
I would too!
Here is a link from Mayo Clinic on AV Node ablation and another about Atrial Fib:
https://www.mayoclinic.org/tests-procedures/av-node-ablation/pyc-20384978
https://www.mayoclinic.org/tests-procedures/atrial-fibrillation-ablation/about/pac-20384969
And here is a link from the Heart Rhythms Conditions group that you may find interesting:
https://connect.mayoclinic.org/discussion/av-node-ablation-pros-and-cons/
You say you feel like you "somehow failed".
Nothing could be further from the truth!
These things are not in your control, but thankfully, our advances in medical treatments have allowed physicians to be able to treat these conditions today, that decades ago they could do little for.
It is a blessing that you have been a life-long athlete, ate well, didn't smoke, etc, all that is going to help you going forward.
Be sure that you talk to your healthcare team at UCSF. They are a Center of Excellence and trained to assure you of all the risks and benefits to this procedure. Ask them questions, share your fears and concerns. You say UCSF says "I must get the AV Node Ablation"...is there another piece to that statement? Like if this, then that situation? In my experience as a patient we are given the facts, and offered the experts advice to proceed to a surgery or procedure, not the we "must". The decision is yours.
You've come to Mayo Clinic Connect to find answers and to learn you are not alone, and you're not alone Jen, you have a lot of other patients with your same diagnosis.
My advice is to learn as much as you can so you feel empowered to be part of the decision process. You have to be your own best advocate and your own best friend.
You need You to be your best You!
Have you had a chance to write down a list of questions you have for your care team?
I suggest you read the links posted and do some reading here on Connect and get your list ready.
When do you see UCSF again?