← Return to HCM-ers: Introduce yourself or just say hi

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@colleenyoung

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I’m tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

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Replies to "Hi Connect HCM-ers @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag..."

Hi Colleen,

Thanks for the invite. I’m looking forward to the new group.

Margaret

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Welcome back to Connect Margie! You’ll see that a lot has changed on Connect since you were last here – most importantly growing members and connections being made, and valuable information, experience and knowledge being shared. I’m sure the newer members would like to get to know more about you. Will you tell us a bit more about you and HCM?

Thanks for the invite. I was diagnosed with HCM in 2010 after a cardiac arrest. I moved my care to Mayo in 2014 and have been managed very well ever since. I have a strong family history of HCM and was misdiagnosed with asthma for 23 years. I don’t have asthma. 😉

Hi, I am Wandy Karnady from Jakarta, Indonesia, since October 2012, I had been diagnosed with Septal Hypertrophy Cardiomyopathy (Septal HCM), with LVOT gradien 68 mmHg.
I contacted Mayo Clinic Rochester in December 2015, was very lucky been recommended by Colleen Young, the Connect Director of Mayo Clinic, to join Mayo Clinic Connect until now. 
Until today I have just been taking 50 mg Tenormin (Beta-Blocker) once a day, while doing 1 hour walking exercise every day. So far my condition is improving, recently LVOT gradien is around 50.
Thank you so much to Colleen for inviting me to follow the new HCM group on Connect, as the information exchanged by the participant in this group been really very useful for me and all the other HCM ers. 

Best Regards,
Wandy Karnady

Hi Wandy, I’m glad you could join us! So you’re from Indonesia. With the picture of Mt. Robson in your profile picture, I thought you might be Canadian. Welcome to the group.

HI Wandy and welcome. Have you been able to travel to Mayo Clinic to be evaluated?

Hi ! I am 52 year old female who suffered years with HOCM. Last March, I had Septal myectomy, mitral valve replacement, pacemaker and 2 cardiac windows because of bleeding. I spent over 40 days in hospital and went home with openings in scar, infection and pic line. After scar closed and infection cleared I thought it was over. September I had to go back in because scar opened due to infection and needed peck flap surgery.
I am currently pacing at 80 % and had to switch to medicine to stop extra beats. I can’t touch chest area because so sore, and live in fear that this is not over yet. Drs say exercise, that would be great if I wasn’t always tired and short of breath. Is any of this normal? Has anyone had complications like this? I have been through Harrington rod surgery and surgery for Arnold Chiari (brain) and would prefer going through those again than dealing with this! Thank God I have family and friends who are with me every step of the way!

I wonder if it is caused by your beta blocker. Being so tired. I am getting mine changed up. I refuse to live feeling tired, fatigued, cold and achy.

I am not sure. My Dr had me on toprol before surgery and all I did was sleep. Then went on atenolol before surgery and I was ok. After surgery and when I started skipping beats they put me on Sotolol 80 mg which I even tried splitting to 40 in am and 40 in pm. He said this was the last one to try.  I live upstate NY so have local cardio Dr here who is affiliated with Columbia Presbyterian in NYC, but I think I will get in touch with one somewhere else to go over everything. Very frustrating

Thanks for the invite. I underwent a septal myectomy two years ago and am feeling well after the procedure. I work at Mayo in communications, but even though I work here, have to say the experience prior, during and after has been amazing. I can be a local resource for you if you are ever in Rochester, MN. Thanks

What’s your post myemectomy gradients.

Pliz detail me the details of cost

1. Echocardiography

2. Other relevant tests

3. Myomectomy procedure

Total for surgery, and all the tests. Had 2 echoes. A bit over 70 thousand. Which, both my husband and I thought was reasonable.

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