HCM-ers: Introduce yourself or just say hi

Your symptoms totally sound familiar! I was a runner/walker too. I couldn't figure out what was happening. And neither could my cardiologist! I couldn't tolerate the meds either. Once I made it Mayo, I knew I was in the right place, at last.
I am glad to hear your have an amazing wife who will be by your side. That is a blessing for certain. I had to fly across this great Country to Rochester, and part of that trip involved a two and half hour drive to the airport. It was an unpleasant thought, but when it was time to go home, the trip was not as bad as I had conjured up in my mind.
I would share several of the same things about packing as for a woman...loose pants, easy to pull on shirts, slip on shoes. And don't forget your cell phone charger if you have one! The days before your surgery are jam packed with all kinds of tests and procedures, so be prepared to get in and out of your clothes several times in one day.
Thank goodness you had a cardiologist who recognized what you had and where to send you. I am ever so grateful you found Mayo Connect. I hope you keep coming back and keep updating us. I am giving you extra bonus points for sharing Mayo Connect with the cardiologist! Very cool.

Hi, I'm new here. I was just diagnoses last month.

@krb48, I'm so glad you found Mayo Connect. Welcome!
I hope you have had time to poke around on here...there is a lot of information you can learn from other people who share HCM/HOCM.
You mention you were just diagnosed last month, does your cardiologist have a good working knowledge of HCM/HOCM?

I was diagnosed with HCM almost 2 years ago. I’ve been told there is no medication or treatments for my version (without blockage). I’ve tried beta blockers, calcium channel, and Lasix and nothing helps my symptoms. I am not a candidate for mavectam either.
The symptoms are scary at times and I’m curious how others in my situation deal with the shortness of breath and chest pain that comes and goes. I’ve likely had some afib. It feels like I am in “no man’s land” because I don’t fit the criteria for much of anything.
I feel myself not only becoming more anxious, but depressed as well.

@rmhc123

Hi everyone. I was diagnosed with HCM in March of 2023, at age 62. No family members had this. I was a fitness instructor/trainer/weight lifter for 32 years, so this came as a complete shock.
I was sent to Mayo, in AZ, in January of this year after having congestive heart failure while lifting heavy weights.
They realized that if I do the valsalva maneuver, it has a negative effect on my heart and I don’t get the blood supply needed.
My Troponin levels went to 12,000!!!! ER doc thought I may have had a heart attack, but no.
My BP was at 69/45 for about an hour, until they were able to get it back up with some drug and angling the bed so my head was lower than my feet.
Anyway, I do at least an hour of cardio a day, staying under 120 BPM and I now lift light weights, 15 reps, 3 sets, 3 days a week.
I am finding not many Docs know about weight lifting and HCM.
My Cardiologiat had said I was fine to lift weights, because my septum thickness was only 13mm. But she didn’t realize have the info about the Valsalva Manuever for some reason. It was on my Echocardiogram, they have me bare down during the test, but she must have missed that. So after my second ER visit, the hospital cardiologist saw that on my Echocardiogram there. She consulted with my Cardiolologist and they ended up sending me to Mayo to see a specialist.
I only have breathlessness if I eat complex carbs or eat too much and try to walk uphill or exert too much. Otherwise, I am perfectly fine.
I am glad I found this site, thank you all for sharing, and God Bless!

That is quite a story you shared @camtak! I'm so glad you found Mayo Connect too, welcome aboard.
How wonderful that you are a super athlete. But no wonder you were so shocked. I was too when I found out I had HOCM at 62. Your story is so similar to mine. I was told no more yoga or weight lifting too, because some of the strong poses, and the strain of lifting something heavy could send you into V-tach. And V-tach kills you! And isn't the eating a large meal deal the weirdest thing? Who would think?!
What a blessing to be have been sent to the Mayo in Arizona. You mention you were sent to Mayo, I assume you mean Rochester? That is where the finest in the world are for HCM and HOCM. Will you need to go back to see them for follow up?

Hello karukgirl!!
Yes, they put referrals in to both MN and AZ, and AZ is the one who responded.
I saw Dr Cannon. He really just went over the symptom options, none of which I was ok with. He did increase my Metoprolol dose to 25mg twice a day, and that made a huge difference, even after eating.
I understand how the eating plays a role with the breathlessness, all the blood going to digestion and none left for an hour or two after eating certain things or too much.
I can really mitigate any symptoms by staying hydrated, planning ahead my eating schedule with what I am doing.
I almost never sit down!! I am busy and active every day. Tons of energy and I love the outdoors.

I was diagnosed about 2 months ago cardiologist put me on fluid tablets which caused a really bad UTI he said don't take any more getva antibiotic to clear the UTI Did that almost better then started vomiting a lot really tired slept for nearly 3 days husband called ambulance as I was on a lot of pain turns out I now have a really bad kidney infection antibiotics for that still not feeling that good but on no medication for HCM do you think I should go back to the Drs 🙏🙏😋💜

Hello there @mummsy, and welcome to Mayo Connect!
Wow...you have had a really tough time, haven't you? It sounds like you need to get over this terrible kidney infection and get stable again before anything else can happen.
Once you get over this, is your plan to return to the cardiologist who diagnosed you with HCM?
It is so important to listen to the doctors treating you, but it is just as important for you to learn as much as you can about your condition, and to listen to your own body. You know you better than anyone! You mention you were diagnosed with HCM just two months ago and were put on "fluid tablets", I'm going to go out on a limb and guess that those pills were a diuretic like Lasix/furosemide? Do you know why they put you on a diuretic? Were you having trouble with edema or swelling?
I hope you are feeling better very soon, and hope you come back and share with Connect. This is why we are here...to share and offer support in good times and bad times.