HCM-ers: Introduce yourself or just say hi

Hi, sorry to hear about your nephews health. Hypertrophic cardiomyopathy association. Lisa Salberg chief executive officer and founder.(973)983-7429 Denville New Jersey. 4HCM.org ; support@4hcm.org;
Facebook: @4HCM.org ; Instagram 4HCMwarriors
It’s a 501(c) (3) Organization
66 Ford Rd. Suite 216 B
Danville, New Jersey 07834
Objective. Provide information & support to patients ,families&medical community regarding HCM. Your nephew is in our prayers

Hello-I am looking for a HCM support group for my nephew in his early 20’s that has been struggling with depression more and more lately. He is not on hospice yet, but medications are the last and only thing for him to extend his life after his 5 open heart surgeries.
Is there an online group that can be recommended?
Thank you!

I'm from Wisconsin as well

Hi,
I have DCM. I know it isn't the same, but we don't have a forum. So is it safe for me to be in this one? I have so many questions

Hi, I have also HCM Apical, I would like to be in contact with you.

That's good to know that the surgery makes such a big difference. That seems to be the common sentiment.

I had a icd implanted in may of 2021 then a septal myectomy in October of 2021 cause every month I was getting shocked and it would send me into afib, and it’s unpleasant, since the surgery what a difference no shocks and no shortness of breath, dr shaff and his team at the Mayo did a awesome job

Hi! Jake G. here. A diagnosis of HOCM was confirmed in May of this year and I had an ICD implanted on July 20, 2022 so this is all still very new to me. I've had varying degrees of success with cardiologists but have finally found an HCM specialist at University of Texas Health and Science Center San Antonio. I'm in the process of switching cardiologists to the specialist. As near as I can understand it, the decision to insert an ICD was due to an apical aneurysm in my left ventricle and some ventricular tachycardia which apparently put me at higher risk of SCD. Other than chest pain and some occasional bouts with shortness of breath, my symptoms are thankfully mild. From what I've read here and another forum, some people have a myriad of symptoms and I can't imagine how stressful that is for those folks, both mentally and physically.

I'm sure I will have a lot of questions along the way, but I'll start with just one: I read a lot of people that have an ICD and then some time later have a septal myectomy. Enough so that I wonder if a septal myectomy is an eventuality with everyone with HOCM. I guess it makes sense given that there's no way to reverse HOCM but am I correct in assuming that a septal myectomy is likely in my future? Thank you in advance for your response(s).

Hi, I haven’t been on for a number of years. I’m Fitchizumi634. Dealing with a lot of problems plus HCM. I don’t know if anybody can help with an answer. My doctor tries to keep my blood pressure in the 140 range I feel the best tthen,but it keeps dropping and if it goes into the 130 or below I get very woozy and lightheaded I can’t even walk straight. I have blacked out a few times, last October in the cardiologist office. Ended up in the hospital my pressure was extremely low. She took me off Valsartan 20 g said to take it if it goes above 150 take the pill. I can’t drive for fear of a BP drop. Dr said to take salt water if it goes below the 140s. Any suggestions?

I have not had a myectomy. But I can connect you with others who have. I see you also posted in this discussion.

- What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/

I'm confident fellow members will share more. How are you doing post surgery?