HCM-ers: Introduce yourself or just say hi

Hi Valerie,
Welcome! I had a septal myectomy in 2020 and I was intubabated post op. I am not a medical expert, but have worked in hospitals for 42 years...I think most everyone after being on the bypass machine is intubated until they can breath on their own. Everyone is different, some with pre-existing conditions, so the time on the respirator is different for each person. They try to wean you off as soon as possible when it is safe. I was on for 4 hours after arriving in ICU. I remember it well! Feel free to ask questions...that's why we are here. It is a big surgery and anyone would be nervous about it. Having trust in your surgeon, the hospital and the nurses is very important, and the Mayo Clinic is the top in the world, the best of the best. Of course I am slightly biased 🙂

Hi, I am Valerie, 63, and thankful for this group. I may have a myectomy, and I am wondering if you are intubated after the surgery.

See lower down in the Blog section for Congenital Heart Disease-there is a section on HCM that starts off with treatments. It may answer some of your questions before you see your cardiologist. You both are blessed to be diagnosed later in life…

I am happy to see some replies. I was trying to find a support group for my nephew that was diagnosed in junior high with the genetic Hypertrophic Cardiomyopathy with atrial fibrillation. My younger nephew that just completed high school is also now showing signs, and the two younger sisters are both carriers. Good luck to both of you, and hopefully my nephew will be responding soon as well!

Thank you for your reply and kind words. Yes many questions. I plan to navigate around here, and try to figure some things out. I made another appointment to see my cardiologists to find out if there is any treatments other than medication. Thanks again, your reply mean a lot right now.

Hello @jojs ,
Welcome to the "Club". I'm like you...diagnosed at 62, came out of nowhere, but looking back now I see I missed some signs. It didn't help that in my rural Northern California medical community...I was misdiagnosed for several years. Ask anything you can think of and myself or someone else on here will be happy to answer. I had a septal myectomy at the Mayo in Rochester in July of 2020. There were so many questions I had too, and so much information I was able to find here. This is an active group, so maybe take a poke around on some of the many topics in this area. Colleen Young, the moderator is a wizard of all things on this site and she is always willing to help point you where you need to go. It's overwhelming at first...and there is a lot to take in. Take a deep breath, try to relax and learn as much as you can. I would be happy to share with you anything you ask. Just ask!!! Take care. You are in good company here.

Hi,
I was just diagnosed with this disease. Was caught late.
Wondering if this group is "active". Im seeing posts from year 2016.
Im 63, and thought I was healthy. I noticed heart palpitations, feeling lightheaded, low blood pressure for a year or more. I thought I was just stressed out. In September this year, had echo cardiogram, ekg. Both showed this disease. Now where to go from here?

Anyhow, I could be talking to myself.. 🙂 so wondering if someone could direct me around here.
From Wisconsin

Hello,
I am Valerie and have received a recent dx of OHCM. I am losing weight (started at 220), but am curious to know if dramatic weight loss might lower the necessity of open heart surgery.
I am 63 and live in New Hampshire, not far from Lahey. Thank you kindly.

Hi Joyce1109, welcome to the club. hang in there you will get the 40 pounds off. Think positive at all times our hearts are damaged but, we can learn and help each other get through this. I am in my 80s with many Health problems. water is our friend, I don’t think about eating if I have a glass of water. You can pretend it’s a milkshake anything to help. if you’re able to walk do so I know I should walk more. we will fall back with some thing so don’t be discouraged keep strong and do the best you can. PS have a full glass of water before you have your Thanksgiving dinner. It helps to fill you up and you eat less. fitchizumi

Welcome @joyce1109. I'm tagging fellow HCM-ers to join me in welcoming you, like
@escogido @fitchizumi @janetcf @karukgirl @manning2000 @bxr227 @hazmat1 @jakegeorge823 @thomasandmichelle.

Congratulations on having the will to lose weight. It's not easy, especially if you have a medical diagnosis and history of binge eating. What healthy approaches have you learned to reframe your relationship with food? You were successful with the initial 60 pounds. I'm confident that despite the setback you can do it again for your heart. :-)❤