Any Young adults with HOCM and future ICD surgery and septal myectomy?

Posted by nicolephan @nicolephan, Nov 8 5:01pm

Hi! I joined this group to hopefully connect with others going through the same thing as me 🙂 I was diagnosed with HCM as a baby, and now finally at 24 years old, my symptoms have progressed dramatically. I am scheduled for ICD surgery this December and am in the process of scheduling a consultation and possibly a septal myectomy at the Mayo Clinic in MN. I was hoping to connect with others, and more specifically with those around my age, going through the same thing. It can feel lonely when those around you don't know how it feels to live on a day-to-day basis with fatigue and shortness of breath. Especially, at 24, it is frustrating to feel like I can't keep up with my peers and feel stuck in a body that shouldn't feel this way. Even though I've known about this condition my whole life it feels as though it's hit me out of nowhere recently. Does anyone have any tips on dealing with anxiety and overwhelming thoughts about their health? Thank You!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Debra, Volunteer Mentor | @karukgirl | Nov 9 10:29am

Hi @nicolephan, and welcome to Mayo Clinic Connect.
You share a story about your symptoms that many others feel, regardless of their age! Hopefully a younger member will jump in here that can relate to your same situation.
I remember when I was first diagnosed about four years ago, I knew no one with this, had not heard of it, and could barely spell it! I felt alone, and found it difficult to deal with all by myself. It is hard to explain to someone what it's like living with this, when you feel like you're going to die on some days!
I am sad to hear that you have progressed and it feels like you are in the fast lane suddenly, but also relieved to hear you are getting your care at the Mayo Clinic in Rochester. They are the finest in all the land, and you will be in the best place in the world for your condition.
Because being short of breath, having rapid and irregular heart rhythm, not being able to do physically what you used to be able to is very depressing and totally can cause anxiety.
You ask for tips to deal with these obnoxious symptoms...and I would say that each of us is so different and unique, there can be many ways to offset those anxious thoughts. For me, I prayed a lot. It brought me calmness and peace. But it only worked when I truly listened. I also was able to walk still. I had bad days when I could barely make a mile and had to stop a dozen times, and other days I could fly around my six mile river trail with barely a symptom. Walking was therapy to me.
Your mind is a powerful tool and you can use it to talk to yourself and control those anxious thoughts. You are also the only one who knows you the best, and listening to your body and being your own best advocate is the most important part of this journey. You have already taken steps to advocate for yourself by joining Connect!
Good move! You are not alone here. There is a big online community here to support each other.
I do know what it's like to not be able to do things you love and want to. It sounds like you are on track to get this taken care of. Nobody wants to have open heart surgery. It's freaky scary! But you are tougher than you know you are, and going to the top hospital in the world for HOCM.
December is coming right up! When is your ICD scheduled for? Have you had a chance to poke around here on Connect? There's a whole lot of information regarding HOCM, open heart surgery, ICDs.