HCM-ers: Introduce yourself or just say hi

@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!

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?

@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

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.

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

@karukgirl
Hi Debra, I have checked out the Camzyos group. Very enlightening. Not sure about my echo appointment, but I’m sure it’s about 1 month away. Thank you for all of your help!
Danny

@dconner Danny, I join Debra @karukgirl in welcoming you to Connect! We are all so different in how HCM can affect us and the specific treatments that help us lead our best lives. I am glad to read that you are trying Camzyos, it was still in test stages when my HCM needed mote intervention, I am also glad Debra suggested that you look at https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/. It's worth the travel to receive the best care. Have others in your family been diagnosed or have past generations exhibited heart issues? This is an inherited disease, please be sure that your blood relatives are screened. My HCM journey started with a heart murmur in my mid-late 50's, have you had other symptoms before you experienced months of pain? We love to encourage others and share our experiences, but please do be aware that we do not give medical advice. Do keep us posted!

@janetsuewright Welcome to the HCM blog on Connect, I see that this is your first post, I am assuming you are newly diagnosed with HCM, we are glad you joined us, the big-hearted people crew. Overwhelmed is probably an understatement, you have come to the right place because we have all been in your shoes. It will take a while to organize your thoughts with everything that is overwhelming you at this point, so do be patient with yourself and you will get a handle on "options on care." The first and second things many of us suggest are to become associated with a COE (you will learn too many acronyms, this one is Center of Excellence), such as Mayo Clinic where people have been treated for HCM for decades. The other suggested step is to learn as much about HCM for your own knowledge and to formulate your questions to your doctor. May I suggest as a starting point https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198. Besides Connect, I belong to an organization Hypertrophic Cardiomyopathy Association (4HCM.org) which helps people with finding a COE, has Zoom discussion groups and many additional resources. Please do contact them for an intake interview. Together, in different ways, 4HCM and Connect give much information and support. How did you find out that you have HCM? Have other family members been diagnosed (HCM is inherited). How is HCM affecting you? Again, welcome and we look forward to hearing from you. (As soon as I posted this, I saw that my fellow mentor, Debra, responded to you, too! She writes such helpful posts.)

Hello Danny, @dconner, and welcome to Mayo Clinic Connect.
This is a great place to come to both share your story and learn from others going through the HCM journey.
HOCM certainly does cause fatigue. It can be debilitating for some. Have you had a chance to check out the Camzyos Group? They are the best group for sharing how Camzyos has or has not helped them and all the symptoms along the way.
Here's a handy link to those posts:
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
I know is may be inconvenient to travel, especially with the price of gas these days (ouch!) but this is your health and your life, so though it may be annoying, you are worth it!
You started just a day ago, and things may change rapidly. Some people report near miracles in their symptoms going away, and others take longer. Some just can't handle the drug.

You know you better than anyone else, so you will know if the Camzyos is helping or not.

Check out that Camzyos link and read what so many others have shared.
Connect does just what it says...Connects people with similar conditions, which is wonderful because you are not alone.

When is your next echo?

Greetings @janetsuewright, and welcome to Mayo Clinic Connect. I see you have found the HCM group, which will be of great comfort to you. You will find here other people, just like you, who share this condition. Many, dare I say most of us, were overwhelmed when first learning of this diagnosis.
I can share that for me, I was both relieved (at last I finally knew what I had!) and terrified (am I going to die?), so I totally understand feeling overwhelmed.
Have you had a chance to read the numerous posts here on Connect?
There are many.
Have you had a chance to educate yourself on what is living inside your heart?
Here's a post from the Mayo Clinic regarding HCM:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
May I suggest that you learn as much as you possibly can about this condition. This will help you understand your symptoms, and you will also be better able to share in the decision process along with your cardiologist.
There are treatment options, as you mentioned, and you need to know what they are, and which ones would be best for you.
Right now you are overwhelmed and rightly so. The more you learn, the less you will fear.
When do you see your doctor next?