HCM-ers: Introduce yourself or just say hi

I do not have an obstruction, I had to go on line to find a docter. But I found one,and he's only 2 hours way so not to bad... thanks. 🙂

@traceysmith Well put! Thanks for sharing about your loop recorder. Not to worry about spellings - we all understand what you are saying! Teresa

Hello, and welcome, Tracey. I was misdiagnosed for 23 years, so I can relate. I agree, if you can find one of the HCM specialists in the UK, that is where you should be. You can check out http://www.4hcm.org and they can help you find someone. This disease is quite the challenge for those of us who have it, that's for sure. It is so easily misdiagnosed and we, particularly women, get patted on the head and sent home. Been there, done that.

I presume you were gene tested and they found one of the HCM genes, correct?

Welcome Tracey, welcome to the site. I think you'll find the site can help you relate to others who are going through similar experiences. I'm 56 , was diagnosed with HCM two years ago and also had a septal myectomy at Mayo Clinic. The surgery changed my life. (full disclosure, I work at Mayo in Communications) It worked and I feel better than I have in years. I never blacked out but had shortness of breath and extreme fatigue and always felt like my heart was working way too hard.

Hi @tracysmith and welcome. Often times HCM symptoms are caused by obstruction and not arrythmias. Do you know whether you are obstructed? Are you seeing a doctor who is a specialist in HCM? I know there are several in the UK.

Hello @traceysmith,

Welcome to Connect. We are so glad to have you join us...and such a young grandma too!

I'd like to introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @rmcmillan @catiemorris @wandikarnadi @barbararickard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @lisa7 @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @vivian88 @vialox @janicepike and others in this discussion.

@jigglejaws94 @mogirl92 could you share your insights about the loop recorder?

@traceysmith, do you feel that your heart is beating too fast or too slow? Have you told your doctors about the sinus rhythm and your recent symptoms?

Hi all... I'm in the uk. And my docters took over 20years to tell me what was wrong. I've been blackin out from the age of 16.... I'm now 39 and was told I had hcm. 3 years ago... every time I had a hcm event I called 999 want to hospital and all looked ok.. I would be in hospital for 1-3 days and then sent home with the all clear. But I'm here :). I have 4 kids and 2 grandchildren. All my kids have been gene tested and all have came bk as clear. Sometimes I do not believe it, all 4 are well..... so my grandchildren will be safe... but any way no more about me.. hi all..... 🙂

I have a loop recorder fitted.. and every time I fill like my hcm is playing up. The loop recorder says all ok.... I can have what fills like a heavy weight on my chest and I find it hard to get a full breath. But the loop says alls well... my heart is in synus rhyme.. (sorry for my bad spellings)

Thank you♡♡ I was nudged by my endro, to seek out my cardiologist. I ran across the webnar, of Dr.Omen, and Dr. Schaff. Otherwise, I would still be sitting here today feeling lousy.

Sometimes tone and intent don't come across so clearly on message boards. I don't think that Justin was trying to shut down the conversation. I just think he was trying to give @vialox some helpful info.

In any event, we are happy to continue the discussion. I think the bottom line is that different people are referred different ways. Sometimes, local docs already have a relationship with Mayo and will make the referral. Sometimes, patients take the lead and refer themselves. At the end of the day, they all wind up getting the same great care at Mayo.

One thing that I have found to be true in the almost 20 years that I have been a HCM patient is that there is often a lack of knowledge about HCM by local cardiologists because they usually lack experience with HCM. It is not the thing that they usually treat, I myself bumped around through a few before I wound up with my current team, and even then, I still had to refer myself to Mayo when it became time for surgery. I think alot of learning to live well with this disease involves finding medical professionals who are experienced in treating the disease. HCMA and others have gone a long way to helping this become possible for many people.