HCM-ers: Introduce yourself or just say hi

As of now, no one has been diagnosed with HCM in my family, although both parents had heart issues.

Thanks for the additional resources. I see my pulmonary doctor in June. I will see the cardiologist after genetic testing is completed. I was told this was required to get approval for the medication.

Hello. I was recently diagnosed with HCM this March. After almost 20 years of having increasing shortness of breath, coronary artery stents in 2008, open heart surgery in 2016. A fib 2 years ago, resulting in an ablation.

I was referred to a pulmonary doctor for shortness of breath, and after 5 years with him, finally got diagnosed with HCM.

Now going through testing and a genetic study. Hoping that I get approved for the meds. Not looking forward to any more surgery.

HCM has essentially limited my physical activities.

@jachrist Hi JIm. I am having a septal myectomy. I am sure knowing your heart works better is a great relief. Do the doctor have any reason for the continued shortness of breath? Should they have maybe removed more tissue? That would be disappointing for me to still have breathing problems but I suppose I should be prepared for whatever happens as I still hope for the best. Did you have the Myectomy? Any advice? Jeanne

@karukgirl Hi Debra, thx for replying to my post. Yes, I have the portal up. It just seems to have two women for me to contact that are not medical or even located at the clinic. They have been making pre surgical appts. What they post for me is very confusing as they have been listing many conflicting days and times for the past month or so. As it stands now, I won't be meeting any doctors prior to surgery. (Ommen/Dearani) I know that can't be right. They even have the surgery listed on the day before I was told it would be, with an evaluation being done the day after surgery with a location I need to get myself to. I am hoping it works itself out in the end. I hope it is more organized when I get there. I hear wonderful things, I just haven't experienced it yet with the schedulers. I'm sure they are doing their best with the information they have. I also hope they don't read these posts!

@walkinggirl Hi Linda, Thx for welcoming me. I am having the Septal Myectomy. Your story sounds miraculous. I will try to talk to the doctors if I get to meet them prior to surgery about what to do if depression worsens after surgery. As it looks now, my schedule prior to surgery doesn't have any such surgeon meeting scheduled. These doctors must be very busy. Hopefully, the schedulers will come up with something soon and I won't show up on June 1 only to find out I can't be fit in.

@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?