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

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.

Hello @nicolephan, I'd like to invite @edkoch, @swiendels and @jootzy who all discussed septal myectomies on Mayo Clinic Connect. Although their age ranges vary, like @karukgirl mentioned, experiences at all ages are valuable to share.

I'd also like to invite @irishpeaks and @cinpro to this conversation as well.

@nicolephan, if you don't mind sharing, what are your concerns or questions regarding the upcoming treatments you are scheduled for? It is certainly understandable to be frustrated, or even disheartened, to experience health issues that your peers cannot or will not understand. Do you have anyone close to you who is has an empathetic ear as you embark on your treatment plan?

I can first start out by telling you that you made an excellent choice by coming here for advice and information, these are some very knowledgeable and helpful folks to have in your corner.
I can completely understand your anxiety about getting your ICD implanted, seems like a huge step with so many unknowns. It is indeed a big step, but that step is firmly in the right direction. Don’t let yourself believe anything other than that like I did, it will cause you more grief that is not favorable to your situation. ICD’s are absolute lifesavers, plain and simple.
I have hereditary cardiomyopathy which took my father when I was 4, so heart problems have been in my life since I was a young guy. It sounds like you have also been around it from a young age as well.
Younger patients often ask themselves what they did to deserve this, or just simply “why me at such a young age?”. I sure did, and to some extent still do. I sometimes second guess life choices that could have made things worse or better. Basically beating myself up for no good reason with nothing to gain. That’s not conducive to a healthy environment for anyone, let alone a heart patient.
What I can tell you is that I went from looking at it that way as time has progressed, to just being very thankful for the time I’ve had (and hopefully the many more years I’ll get) with this extraordinary thing that we call life. If I get down about something, I immediately revert to this kind of thinking and it calms my thought process immensely and most of the time will even trigger memories and good thoughts from my past. Big bonus for an anxious person like myself at the time!
For me, the mental aspect of it is immensely more difficult than the physical aspect. Each person will obviously be different.
The physical side of things concerning an ICD for me have been nothing short of stellar. I have had no issues with the device itself and it has worked flawlessly. The therapy (shocks) that they give can vary in intensity depending on your situation, so it’s not like every correction given is an all out massive “blast” like television would show. Some aren’t even noticeable. I would be lying if I said that some weren’t very uncomfortable though, it’s just the reality of the situation. Again, I revert back to just being thankful to be in this fight and it calms things for me. If something similar to that doesn’t seem to work for you, there are other options for therapy and such. They have medications that will help with your anxiety as well. I used one until I got adjusted and then got off of it. Big help at the time. Certainly don’t be afraid to ask if you feel it to be necessary.
Device care and such is very cut and dried usually, so that shouldn’t be much of a burden when healed. The newer ones are very advanced and give you some great information as to what your heart is up to. They have a faraday cage that keeps most outside electronic interferences from being a nuisance, so that eliminates a lot of worries about some random device triggering yours to do something it shouldn’t.
I could go on and on like I’ve been doing, but my point is that they are wonderful and a lot of folks wouldn’t be here today without them.
I hope this can bring you some comfort and clarity. If you have any questions feel free to reach out, that’s why we are all here.
To be anxious is human, to be alive is extraordinary!

With this being my last comment on here, I’d like to thank everyone for their support and words of encouragement. It helps more than some will know. Best wishes to everyone and God Bless!