HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @colleenyoung, Oct 25, 2016

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon on the group landing page.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

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

joeymopete | @joeymopete | May 2 11:34am

In reply to @janetsuewright "Reaching out pretty over whelmed, options on care," + (show)

@janetsuewright
Can you tell us more about what you want options on, please?

jeannelamana | @jeannelamana | May 5 5:38pm

Hi Colleen and Others. My name is Jeanne. I'm 65 and just found out I have HCOM last fall. The diagnosis sure explains a lot about my life thus far and I am happy to have answers. My doctor (s) tried Beta blocker, Calcium blocker, Camzyos and Aficamten. They all made my symptoms so much worse. So, I have been waiting since February '26 for Surgery with no medicine on board. June 3rd is the big day. This past week my symptoms are almost constant and more severe. I am more light headed as well. I think about my heart all the time because it makes its presence known. I had been very active most my life, even though it was difficult to be. Last year at this time I was still forcing myself to do 4-6 miles at least 4 times a week. But I can't even walk 1 mile around the block anymore. This has affected my depression. I feel myself isolating and am feeling alone even though I have a very supportive husband. I have taken an anti depressant for 25 years and it has always done the trick allowing me to be emotionally happy and healthy. I just think the anxiety of anticipating surgery in 3 weeks and the unknown is getting to me. I have read so much of what this group writes and I really appreciate it. It has been really helpful. I think my biggest concern is that I will have to deal with worse depression during recovery because it seems like I am leaning that way already. That would be awful and I'd like to stop it but don't know how without exercise. My prescribing doctor of anti depressants is a nurse practitioner and will probably suggest Wellbutrin which didn't help me several years ago when I needed a boost, but worked through it. I wonder if Dr. Ommen or Dearani might be able to prescribe something to help me during this waiting period to help me stop worrying about recovery. Something that won't make my HCOM symptoms worse. But something to relax my body and thoughts. Has anyone ever had this issue or concern? Thx for listening.

jachrist | @jachrist | May 5 6:42pm

In reply to @jeannelamana "Hi Colleen and Others. My name is Jeanne. I'm 65 and just found out I have..." + (show)

@jeannelamana

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@jeannelamana
Are you having alcohol septal ablation surgery? I had the surgery which was a little uncomfortable but necessary. I still have periodic chest pain and shortness of breath but my heart works much better.
Jim

Debra, Volunteer Mentor | @karukgirl | May 5 8:50pm

In reply to @jeannelamana "Hi Colleen and Others. My name is Jeanne. I'm 65 and just found out I have..." + (show)

@jeannelamana

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Hello @jeannelamana, Jeanne, I am so glad you are here.
Welcome!
Three weeks is right around the corner! Anybody would be anxious, and though I can't testify to having depression, I do believe added anxiety about this big surgery would for sure be an issue.

I'm sorry to hear that your beloved walks have become such a disappointment. I felt those same things before my surgery. I was a big time walker/runner and could still do my six miles on some days, and other days I was actually afraid I might die. I would purposefully wear bright colors in case I went down so they could find me easier if I did die!
The good news is I made it to surgery and I made it through surgery and got my life back.
Now to be honest, I was very healthy and active like you, but I was never able to be 56 again. That was my best time in life. Then HCM, which was hiding inside my heart all my life decided to start taking the things I love away, one at a time.
I could hardly tie my shoes without feeling short of breath. I was 62 when I had my septal myectomy at the Mayo.
What a blessing!
You will be in the best of hands and you will feel the world class care yourself.
I'm sorry about not being able to answer your question about what Dr Dearani or Dr Ommen will or will not prescribe.

In the meantime, I know nothing I say can really help chase away your current feelings, but you know you better than anyone, so please do advocate for yourself and ask. And thank God you have a supportive husband. That is a blessing.

Q: Have you had a chance to create your online patient portal through Mayo Clinic? That's the place to ask that question.
Do you have any other questions that you have not found answers to here on Connect regarding open heart surgery?

Linda, Volunteer Mentor | @walkinggirl | May 6 3:39pm

In reply to @jeannelamana "Hi Colleen and Others. My name is Jeanne. I'm 65 and just found out I have..." + (show)

@jeannelamana

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@jeannelamana I, too, welcome you to the HCM discussion with the rest of us big-hearted people! I will echo Debra @karukgirl in that June 3rd will be here before you know it and you will receive the very best care at Mayo, you may be truly amazed. Will it be a myectomy or an ablation? Do set up a patient portal access to Mayo and contact Dr. Ommen or Dearani about your depression/anxiety; they are the ones with medical advice. Anxiety and depression are both very, very real to contend with, it can seem worse when we are not feeling well and facing a scary major event! We are all uniquely different in dealing with these issues. I am impressed at how well you know yourself and how you anticipate (preparing yourself?) for a possible depression during recovery. I sincerely hope that you will notice quickly how much easier breathing becomes, I would imagine it would feel so positive! I noticed the improvement when I walked up hills and steps, many have noted that they felt it upon awakening after surgery. I was a very active 75-almost 76-year-old before HOCM sidelined me and I returned to being my old active self as I recovered in 2022. Do keep asking questions as they arise!

giolig68 | @giolig68 | May 7 11:16am

In reply to @colleenyoung "Hi Connect HCM-ers @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag..." + (show)

salve a tutti da l'Italia, prendo camzyos 2.5mg da 28 giorni sembra che funziona molto bene per ora, vi aggiorno in seguito.

Linda, Volunteer Mentor | @walkinggirl | May 7 2:38pm

In reply to @giolig68 "salve a tutti da l'Italia, prendo camzyos 2.5mg da 28 giorni sembra che funziona molto bene..." + (show)

@giolig68 Hello @giolig68! I used the magic of computers to translate your Italian message! "Hello everyone from Italy, I’ve been taking Camzyos 2.5mg for 28 days and it seems to be working very well so far, I’ll update you later." Yes, keep us updated, those who are perscribed Camzyos are interested (I never took it). There are several discussions about Camzyos here on Connect, you can use your computer to translate the items into Italian. Here are two of the many discussion threads: https://www.mayoclinic.org/drugs-supplements/mavacamten-oral-route/description/drg-20534017 and https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/. By the way, I love visiting Italy! Ciao!

Eddie | @emenich | May 8 5:32pm

Hello everyone. I am Eddie. I am 54 years old male. Diagnosed 10 years ago and basically asymptomatic until quite recently. I have been on verapamil then switched to metropolol and cardizen together. I was moderately active most of my life but lately not so much. Symptoms getting worse and gradient increases. I am considering septal myectomy at a COE (Duke) after meeting with cardiologist and determining Camzyos not a good match.
It seems there’s a lot of post-surgical issues Does anyone regret septal myectomy to the point they wish they hadn’t done it?

Linda, Volunteer Mentor | @walkinggirl | May 9 12:36pm

In reply to @emenich "Hello everyone. I am Eddie. I am 54 years old male. Diagnosed 10 years ago and..." + (show)

@emenich Hello Eddie and welcome to the HCM group in Connect!! You have a very important and valid question concerning post-surgical issues after a septal myectomy. Believe me when I write that all of us had exactly the same question you are asking. You are definitely not alone.

BTW, your symptoms and lead-up to this step are the exact the same story for me - active, asymptomatic, on Verapamil until one day, things changed.

From your question, I conclude that you have done much research and know that all surgery has risks. We are all different which means that there are patients who had absolutely no post-surgical issues and patients who had issues such as those you are concerned with.

It's too bad we have no crystal balls that we can foretell the future in our individual situation. I am glad that you are associated with a COE, I went to Mayo where the success rate for the surgery is 99+%. For Duke to be a COE, they must have much experience and an excellent success rate. I can share my post op experience which is unique to me. Once I left Mayo, I was under the care of my home cardiologist who trained at a place that is now a COE, but we have no such place here in the Capital District of NY.

I did develop deep vein thrombosis (DVT) in both legs, when I had pain, my cardiologist wasted no time in having me get an ultrasound to confirm and I was prescribed Eliquis immediately, effect noted within hours. Took it for 5 months. The other complication was that my lucky (yes!) heart started having electrical problems (arrythmias - dizziness and giddiness along with a couple of syncope) and I acquired Buddy, my ICD.

Yes, hearts experience trauma from surgery. But we are the beneficiaries of all the research done and the experience coming from our COE surgeons who are constantly learning how to perfect their skills and keep up with the latest research. My 2 complications occurred after surgery in July 2022, everything has been absolutely fine since then. This morning I walked 10K with my walking club, I go to the gym etc.

My fellow HCM mentor, Debra, started a thread a while back that I think you may "enjoy" reading to help you make a decision. https://connect.mayoclinic.org/discussion/what-i-learned-from-my-open-heart-surgery-part-1/ Another thread was written by a gentleman who had his where my cardiologist trained. https://connect.mayoclinic.org/discussion/my-septal-myectomy-decision-and-10-things-ive-learned-since/

To answer your question: NO, I not for a minute regretted having a septal myectomy at age almost 76. What would my life be now if I had not had it?

You are young (this almost 80-year-old considers 54 young) and have an exciting and rewarding life to look forward to in the years to come. You are healthy enough where your cardiologist suggests the surgery and expects a good outcome. If there are complications, you are in good COE hands, your team will deal with them if and when they may happen. Another thing is that I wanted to be here to share in the lives and milestones of people I care about and I wanted to show courage in facing a frightening and scary event. You will make the best decision for yourself, and I hope you will share with us!

Eddie | @emenich | May 9 3:13pm

In reply to @walkinggirl "@emenich Hello Eddie and welcome to the HCM group in Connect!! You have a very important..." + (show)

@walkinggirl

BTW, your symptoms and lead-up to this step are the exact the same story for me - active, asymptomatic, on Verapamil until one day, things changed.

To answer your question: NO, I not for a minute regretted having a septal myectomy at age almost 76. What would my life be now if I had not had it?

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@walkinggirl thanks so much for your reply and for the information. I’m actually excited about the possibility of decrease and possible elimination of symptoms while I’m still (relatively) young enough to enjoy an improved quality of life.