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HCMA Community Question of the day: We know HCM has taken many things from many people. Please tell us what HCM has taken from YOU. We appreciate this is potentially an emotional question and we thank you in advance for your honesty and candor. It is only though sharing the reality of HCM that we hope to raise awareness and global understanding of HCM.. so tell us... What has HCM taken from YOU? ... See MoreSee Less

3 hours ago  ·  

Hello I am 5 days post surgery myectomy. Feeling pretty good can only hope to feel better with each day. ... See MoreSee Less

2 days ago  ·  

I continue to have chest pain after my myectormy. Every time i go to hospital except for twice my cardiac enzymes have been negative. I am a retired nurse. I have a pacemaker that was implanted before surgery because my heart rate dropped below 30. The doctor has not took me serious about the ICD. It feels like my heart is in a spasm, I get scared and try to wait it out but when I start having jaw pain and arm pain with a stabbing in my chest...I go to the ER. The doctors treat me as though I am a drug seeker. I do not know why they do not believe me. I feel humiliated. They most of the time do not start an IV. Last time I went to Columbus Regional Center. The doctor said you have had the surgery you are fine now and gave me 2 Tylenol . It seems very embarrassing to me .Has anyone else had this problem? Oh and once I was told the same thing left and went to see my doctor the next day and I was in Congestive Heart Failure. Why if they give me 2-4mg of morphine the spasms like go away. I feel fine. When I had my first heart attack it took 3 sets of enzymes to show positive. They run one and make you wait before they start cardiac protocol . ... See MoreSee Less

3 days ago  ·  

Happy Saturday HCM Community. Take a moment to invite your friends and family to LIKE the HCMA Facebook page. One simple SHARE can spread awareness and maybe encourage someone you know and love to get screened and seek medical attention! SHARE THIS to save a life! ... See MoreSee Less

3 days ago  ·  

Please do not send Private Messages to the HCMA Facebook page, instead please call the HCMA directly at 973-983-7429 or email support@4hcm.org ... See MoreSee Less

4 days ago  ·  

I've read the criteria for being listed as a center of excellence according to the HCMA. But does a clinic apply for this status or does the HCMA seek out clinics to award? ... See MoreSee Less

4 days ago  ·  

HCMA Question of the day: To patients and caregivers "The worst thing I did related to my HCM diagnosis was"... While all other questions had a positive spin, this one again is a raw, real and unedited view of our reality. It is our hope that others will learn from the choices of those who have already "walked the walk" So tell us " the WORST thing I did related to my HCM diagnosis was...".... think for the times you ignored the medical advice given, failed to tell family, or bad habits you took on or failed to drop. We know you are all human. Thank you in advance for your input, this one is a little harder we know. ... See MoreSee Less

4 days ago  ·  

Well well, well. Today was interesting.
Mom had her visit with the cardiologist. Same one I've used for several years now.
I told him that I'd had the right and left heart cath that he couldn't authorize according to my test results. He was very upset and said that if he missed something that he really does want to know. He intends to call the specialist and speak with him. He also wants to see the test results. He pulled my info and looked it over. Said he was aware that there was "some hypertrophy" of the heart muscle but that HOCM is a very specific disease and he saw no evidence of that. The last echo I had with him couldn't see any Pulmonary Hypertension but the one before that showed 40. (the heart cath showed 68)
He agreed that with the PH, the chance of making it off the table from a myectomy is slim but even the ASA has risks. (which I knew) Dang, I wish I could remember now, the date of the last echo with him. He said today that looking at it now, there was nothing alarming showing up. He wanted to assure himself that he hadn't missed anything.
When I mentioned the genetic aspect of this and I wondered if Mom has HCM, he said we know she has some hypertrophy of the heart muscle but nothing on her echos that he would consider to be HCM. He also said that while it IS genetic that it can mutate............where you become the first generation to have it. But I've got a pretty strong suspicion that Mom has it too. Perhaps not as seriously as I do. At 90, with one heart attack, 2 strokes and a pace maker, she's certainly not a candidate for a heart cath to find out!
He also said today that he wouldn't jump into EITHER procedure without a second opinion. I'd already planned on that. Not sure yet WHERE but I'd already planned on a second opinion.
It seems as if the more I learn, the more confusing it gets.
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5 days ago  ·  

Todays HCM question is for those diagnosed or caregivers: "When the diagnosis was FIRST given... my first thought was....."
Please be real, raw, unedited... YOUR reality may help someone else. Thank you for all of the comments this week you have all be WONDERFUL... we are honored to have you share your experience with us!
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5 days ago  ·  

HCMA Community

Hi All, Had my myectomy on April 15, and doing well. One of my complaints is the heaviness of my legs. Right out of surgery I felt like I could...

I've had HCM for a long time but only recently developed a gradient within the last few years and my overall quality of life has been going downhill....

Hi everyone. I'm Tanja, and I'm posting with my husband Omar's permission. We've read through other's posts the past few months, and would like to...

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I was fascinated by a story of a Dr. Wahls, who was diagnosed with MS and reversed her symptoms with a modified Paleo diet. She went from being in a...

I am leaving this Sunday for the Mayo Clinic and a meeting on Monday with Dr. Ommen and a scheduled Myecotmy on Wednesday with Dr. Dearani. After...

I just noticed that my bluetooth headset has a magnet in it. I'm guessing it isn't strong enough to cause a problem with my device.... right???

I have HCM and have an ICD and had a myectomy (Jan '14 at Mayo). In other words, like so many of us, I've been around the block. That said,...

Hi All, Well, it's official... as my wife has told me for many years, I am special - and now, I am unfortunately one of the few HCM club members...

To all my American friends and supporters have a great day. I am a starter on a golf course in canada and made sure every American got a little...

I'm heading to see Dr. Dearani at Mayo Clinic for 2 days of testing and meetings and then Septal Myectomy on Wednesday, July 8. I was diagnosed with...

I am a new HCM patient and would like to exercise more. I currently use a Polar H7 chest strap but would like to try one of those strapless models...

Every once and awhile I have spit up amounts of blood (spetum?) Yesterday there was a larger concentration of red and I tasted the blood as I spit...

Every once and awhile I have spit up amounts of blood (spetum?) Yesterday there was a larger concentration of red and I tasted the blood as I spit...

Just returned from the Mayo and I have not received all the test results. But one in my blood work was a bit upsetting and I didn't have the chance...