HCM-ers: Introduce yourself or just say hi

@cpro10 Welcome to the group Celeste. Praying that all goes well with your OHCM. I have OHCM as well , am on Camzyos and am doing OK. I often am not thinking that I have this issue and life goes on. Take care Celeste and God Bless!!

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.

@ebony3, thanks for the welcome! I am 10 weeks into taking Camzyos. It’s good to hear that you’re doing well on it. My dose was raised to 10mg on my last visit to Mayo. Improvement has been noted & hoping for it to continue.
God bless Ebony!
Celeste

@karukgirl, hi Debra, thanks for the welcome. I am quite active and have few limitations. Walking, yoga, light weight resistance exercises are a go. The main tell of my HOCM is how quickly I nod off while reading, listening to podcasts, or other more sedate activities. Before my diagnosis I was wondering if I was narcoleptic.
Making sure I’m alert and refreshed before a long drive is a must. Long winded/monotone friends know not to be offended if I nod off while on the phone.
I’m very pleased with the care and treatment I’m receiving from the team at Mayo. Truly blessed

@bbranin Thanks so much!

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?

So many thanks for your supportive letter! I have a group of nurses at UCSF who serve as a firewall between the doctors and the patients. So, I'm not able to get through directly to the doctors. One of the nurses got angry at me when I asked a sincere question about the ICD-pacemaker implantation. Her answer was: We've discussed this many times! But I was still terrified. You are right, I've had a lot this year. I also had a craniotomy to remove a brain tumor last year which resulted in a coma. Two weeks after my ICD implantation (September 8) my best friend of 40 years died suddenly. I gave the two hour memorial. UCSF says I must have this AV node ablation or risk the slow erosion of my heart. I guess I don't want that. But I know so little about the success rates of the AV Node ablation. This morning I agreed to the ablation at UCSF but not before Christmas. I will read the links. Thank you!

@karukgirl
My doctor is at St Francis in NY. I have my first echo since starting camzyos next week.

Hi im Tammie. Im 51 and have HCM along with Ehler Danlos Type3. I have a subcutaneous defibrillator because of the ehler danlos. Ìm now in a grade 2 diastolic dysfuction. I nursed in critical care for 23 years before these genetic conditions forced me into disability. I also passed these conditions down to one of my sons who has all of this with pots. However the doctors here in our home town are really good doctors but not really specialized in our diagnosis so i would really like to have a care team from mayo that is more advanced in dealing with complex issues such as mine and my sons.