HCM-ers: Introduce yourself or just say hi

Hi I'm Sheri 66 been on it for 5 days. No side effects so far other than insomnia. If I were to get side effects would I get them by now ???

Hi, Im Claudia from SC and currently being treated for HOCM in the Jacksonville facility. I have a surgery consult scheduled for 11/21 to talk about moving forward with a septal myectomy.

Hello Claudia @cwarren29860 , and a big WELCOME to Mayo Connect! I am so glad you found this site...you will learn a lot from other members with your same condition...like me 🙂
I had a septal myectomy and papillectomy at the Mayo in Rochester three years ago. If you want, feel free to ask me anything...anything at all. If I can help alleviate some of the fear the goes along with being diagnosed with HOCM and finding out you need open heart surgery I would be happy to do so. Take a look around here...there is a lot of information. When did you find out you had HOCM? How long did you have symptoms before you were diagnosed?

Summerrobin. I’m 73 year old female the went into atrial fibrillation 2 years ago. After several tests I have been diagnosed with Hypertrophic cardiomyopathy. The afib has not been stabilized and I’m not a candidate for an ablation. I am now in afib continually with a set of new drugs. I'm always optimistic when a I start new med. I'm hear to read of other like minded and health minded people. 😊

WELCOME! Welcome to Mayo Connect @summerrobin. I'm so glad you found us. You definitely came to the right place to find out from other like-minded folks with your same condition. I'm so sorry to hear that your atrial fibrillation is not controlled. That has to be stressful. I hope this gets the attention it needs from your cardiologist. It's not good to stay in atrial fibrillation continuously. Has your cardiologist kept an eye on you with regular follow-up? Besides having atrial fibrillation and now HCM (hypertrophic cardiomyopathy) is your health pretty good? Are you able to get out and walk and exercise?

Hi Debra,
I had symptoms going back ti at least 2015 but was not fully diagnosed until 2018. My Dr at Mayo Jacksonville did a cardiac cath on me in March to see if I was a candidate for septal ablation and I was not. The next step is myectomy due to my very high gradient and muscle thickness.

I live in Canada. I have excellent coverage buy 3 specialists.
Cardiologist, HCM cardiologist and now an electrophysiologist plus a family
doctor. At the moment I’m in controlled afib. All my appointments are
covered by our health care and so are my Meds. I am blessed and cared
for. I swim, go to yoga and walk daily. Just a bit slower now with the
meds.

How wonderful @summerrobin! You sound like you have a very active life. Walking, yoga and swimming...all great activities.
And also great medical supervision. There are several members here in the HCM group also from Canada, so you are in good company. I hope you are able to read some of the posts made by members that are helpful to you. Have you had a chance to poke around here on Connect?

There is no getting around it...open heart surgery is a frightening thought! But having gone through it, and come out the other side, I can speak with authority...it's not fun, but it's not as bad was we make out to be in our minds! Your appointment is in November? That will be here before you know it! Do you have a list of questions to ask the surgeon?

I’ve started a list if questions to ask. My main qyestion right now is whether surgery will be in Jacksonville or Rochester as ther are a lot of ligistucs to figure out. As far as surgery/recovery, do you have suggestions??