HCM-ers: Introduce yourself or just say hi

@walkinggirl
I’m sure going to try to keep walking. I have walked most of my adult life. When I was young, I walked to manage my weight, and now I walk to keep my energy up and stay as healthy as I can. At 3 and a half post surgery, I’m up to 5000 steps, although I need to break it up into 4 walks.
It’s all about slow, steady and consistent. I tend to get impatient though, lol.

My name I jen and I live in cedar rapids Iowa. I was diagnosed with HOCM within the past 3 years. I take camzyos EF. However, my Max vo is only 11.6. They want to evaluate me for heart transplant but they've told me I'm too overweight. I can't take GLP ones because my mother had medullary thyroid cancer and I really am not comfortable with having bariatric surgery. So now I'm stuck and feeling really stressed and overwhelmed and sad

Hi @mamafacion, and welcome to Mayo Clinic Connect.
I'm glad you found the HCM support group.
I understand how frustrated and sad you must be feeling, especially about being evaluated for a heart transplant. That has to be a pretty scary thought!

I also understand that you feel trapped because of your weight, fear of bariatric surgery and not being able to use GLP1 medication.
I found this on the Mayo Clinic regarding GLP1 and thyroid cancer, take a look, you may find it interesting:
https://www.mayoclinic.org/medical-professionals/endocrinology/news/glp-1ra-and-thyroid-cancer-new-study-suggests-detection
It may feel hopeless, but have you considered this situation an opportunity?
Does that sound strange?
Turn this unfortunate situation into an opportunity.
An opportunity to do some deep soul searching, looking for the commitment to be the best you possible.
A wake-up call to come live your life the healthiest and best you can.

I know it is not easy to lose weight.
Food is such a powerful addiction for so many of us. It is unlike other additions, such as cigarettes, alcohol, or drugs...we DO NOT need them to live.
But we NEED food to live.
The problem is we use food as a reward for stress, for happy, for sad, for boredom, for self-loathing, self-medication. It hits all the pleasure centers in the brain and the 'high' you get from the object of your affection (pizza, chips, ice cream, etc) is temporary and goes away, leaving you craving more, and more again when the 'high' wears off.
Vicious cycle that keeps you feeling like a failure, giving up and giving in to food.

Have you thought about seeking out a dietitian or food counselor? Perhaps your physician can recommend a local dietitian in your area.

Have you thought about joining any online support groups?:
https://www.forbes.com/health/weight-loss/best-weight-loss-program/
https://diet.mayoclinic.org/us/
https://www.allencarr.com/easyway-stop-emotional-eating/
This may sound tough, but this is in your control...you have the power. The Allen Carr book is really good. It gets into the psychology behind the addiction and helps you understand why we eat like we do and how to break the cycle. For good.
Are you able to exercise or walk much? Walking any distance is a great mood lifter.
Walking is like free therapy.
Do you have a hobby you enjoy that brings you joy?

Hi, I'm Julie and live in the UK. Here's my story. Exactly 20 years ago at the age of 42, I went to my GP with palpitations. I had had the odd one before but these were all day long for 3 days. The nurse did an ECG and she told me that it showed that I had had a heart attack and asked if I had had any chest pain. I said none at all and she said it must have been a silent one then. She called the Doctor in, he took one look at the results and said the nurse must have had the leads on incorrectly so re-run, she did and it was the same. I was immediately referred to a cardiologist and I was very lucky to be introduced to someone who understood the condition and had written several articles on the topic. That's how it all started. He put me on bisoprolol and I have tolerated it really well for 20 years with hardly any palpitations. Any I do get or normally dietary related, like too much potassium or a supplement that interferes with the bisoprolol. I have severe hypertrophy of the septum and left ventricular wall and am so lucky for it to be non obstructive. For 20 years, the results of all my echos etc. have remained consistent except for my left atrium dia which has grown from 3.2 to 3.8. (Previous consultations never recorded volume for some reason). I have very good blood pressure and normal diastolic function due to the beta blocker. I hold on to my cardiologist once saying that I had wonderful arteries because there never seems to be any positive news with this condition. I remember asking him at early stage diagnosis whether there were any positives with the condition, he thought very pensively and after a few seconds said no. Still makes me smile. I should also say that I got my Mum screened too and my Sister, Mum has a milder version and is still here at the wonderful age of 92 but she is very breathless if she walks she has never had any treatment for the condition. Sister is negative. So unfortunately my wonderful cardiologist left for Singapore, I got a new one and he doesn't give me any of the detail I used to get on my results. In fact one appointment I asked for an echo and all he did was a bedside one and he scared the life out of me by telling me my left atrium was much larger and just said I could take water tablets if it was a problem. So I took myself off to a very knowledgeable structural heart specialist who really understands these conditions. I met him last week and had a full calibration and some tests I have never had before. The echo was much more involved with the pushing stomach technique can't remember the name, plus new blood tests Troponin and BNP which were significantly elevated (38 and 950 respectively but unfortunately no historic data to know whether this had changed in 20 years). Overall he was very positive. give me more advice and tips. We talked about my left atrium which has a volume of 55 (why does everything have to be so abnormal). and of course the risk of Afib which really worries me. I await his full notes but overall I came away reassured. It's all about symptoms of course and here I have been really lucky to-date. There is something I wanted to check with others. I do often get some discomfort in the chest, usually top left or directly over the heart, I can't call it pain but I have always thought it was trapped gas as it goes when gas moves. Do others get this? I really wonder sometimes whether it is angina but it's never painful. I also feel every heart beat, always have, I know when I have an extra beat/missed beat so I am really worried about Afib. My OH has it, I have felt his pulse and I can believe he can't he can't feel it, I wouldn't be able to cope with it so don't think about it. I have no SoB, no restrictions but know this may change so just take it as it comes. Well that's me sorry such a long story but might help those just diagnosed, I remember I was terrified particularly after being told I had had a heart attack.

I just joined this group and would like to say "hi" to all the members. No side effects so far but am quite anxious about the possibility. For those who have experienced them, when do they usually start?

@debrasheila Glad to meet you! I assume you are asking about the side effects of HCM! We are all different and can relay different experiences. May I suggest looking at the Mayo Clinic website and reading about HCM. Here's a link: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
I had some of the symptoms, never had pain or fluttering as many do. For me, 15+ years with only a mitral valve murmur and increasing thickness measurement from echoes were the only symptoms. Later on, shortness of breath increased as the disease progressed. It is important that care from a HCM cardiologist/COE institution be #1 on your list!

@debrasheila I join @walkinggirl in a warm welcome to Mayo Clinic Connect.
Question: Were you recently diagnosed and wondering what to expect from your new and unwelcomed HCM condition? Just wondering if you meant what to expect symptom-wise from HCM...

HCM is weird, and no two people will have the exact same symptoms. Although, many of us do share a lot in common. Shortness of breath on minimal exertion (at times) racing heart, fullness in the neck, chest pain, murmurs, and eating a big meal can wipe some out. There are good days, and bad days. And some progress super slow only needing a beta blocker, and others end up with open heart surgery.

It's important that your cardiologist is top notch in the treatment of this, and it's equally important that you learn as much as you can about this too. It's going to be your job to be your best friend and advocate for you. And if you're educated about this, you can help in the decision making in your case.

Allow me to add to your reading list:
https://www.4hcm.org/
Another Question: Are you near a Center of Excellence? When do you see your doctor next?

@bigheart12345 , welcome to Mayo Clinic Connect, and thanks for sharing your story.
It sounds like you have been living with HCM for quite some time, and know yourself very well. And how crazy to be told you had a heart attack and didn't know!!

You ask if others get discomfort/pain near or directly over their hearts. I can only answer for me, and I had chest pain in the center, that radiated up into my neck and around to in between my shoulder blades. It was random, and not always associated with exertion. I no longer have this after open heart surgery.

I'd like to ask you if you feel confident in your current treatment, or have you considered a second opinion? I know you just saw him recently and felt reassured, but it sounds like you still have some lingering feelings in the back of you mind.
You have reasons to be concerned and I would want to be assured all is well. This could be non-related to HCM or it could be from it, but knowing is best.
My pro-BNP was very elevated before my surgery because my heart was failing. It was not normal to be that high in a patient with no history of heart failure.
When will you see the results of all tests and the final diagnosis?

@karukgirl thanks for that, yes very confident in my current consultant which is my second opinion. I am just curious about things, he explained that chest pain can be as a result of smaller capillaries being squeezed. I am just super alert to sensations around the heart and like to link them to something. As the discomfort never occurs with exercise or exertion and always feels better when gas has moved (I hiccough quite a bit) then I feel reassured. I have already had his verbal final diagnosis just waiting the written report. I did ask him yesterday about the Troponin result and he said that it's mildly elevated and common to be so with this condition. Could you describe SoB, I know that must sound like a stupid question, is it when you are out of breath so breathing quickly or is it that you are breathing but don't feel like any oxygen is getting in or something else. Prior to diagnosis of this condition I can recall walking upstairs late at night and immediately having to lie down because I just couldn't breath, not had that since the diagnosis and the beta blocker.

@debrasheila my first symptoms were palpitations that lasted 3 days but looking back prior to diagnosis there was a light bulb moment. Now I know why I cannot drink any caffeinated drinks after 11 am otherwise I will not sleep at all, I cannot sleep on my left hand side because the strength of my heart beat keeps me awake. Any amount of alcohol makes me feel dreadful the next day. Some foods will trigger palpitations like excessive potassium and artificial sugars are a real no because they trigger palpitations. I also can feel each and every heart beat which I now realise is not normal for many. So in reality, I actually had a fair number of indicators that something wasn't normal.