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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 6 days ago | Replies (1230)Comment receiving replies
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.
Replies to "Hi Colleen and Others. My name is Jeanne. I'm 65 and just found out I have..."
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 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!
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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