HCM-ers: Introduce yourself or just say hi

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.

Hello @janicepike, I hope my reply to @vialox did not come across as an attempt to stifle discussion. Vialox was asking specifically about the process in which to get an appointment at Mayo Clinic. The link I provided is a direct link to the appointment information for Mayo Clinic. I only meant to provide the quickest route to the answers vialox was seeking specifically regarding the appointment process.

Isn't this a forum to discuss?
This is the second time I have noticed the administration is guiding, and detouring specific concerns.

Hello @vialox. The best way to get the answers to your questions is using this link to the appointment request information at Mayo Clinic, http://mayocl.in/1mtmR63. If you call one of the numbers provided, the appointment coordinator will be able to answer all of the questions you just asked!

It is easy to do it on your own. No referral is necessary. The one advantage of having your local doctor involved is that they are more likely to be supportive and helpful after the surgery. Most people continue to have a local cardiologist as well, since you need care at home if something happens and for check ups.

I was able to schedule my surgery and testing all in one visit, but that was because I was pretty sure a surgery was what I was going there for to begin with. If you go for testing and they decide surgery is indicated, they would refer you to the surgeon and then try to fit you in depending on the surgeon's schedule.