HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @colleenyoung, Oct 25, 2016

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon on the group landing page.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Debra, Volunteer Mentor | @karukgirl | Feb 21, 2024

In reply to @par4rosy "Hi I find this group helpful- so glad to be part of it" + (show)

And I'm so glad you found this group too! It's wonderful to find folks going through the same things you are.
May I ask how you found Mayo Connect @par4rosy ?
How is your HOCM/Camzyos journey going?

par4rosy | @par4rosy | Feb 21, 2024

Hi I find this group helpful- so glad to be part of it

Debra, Volunteer Mentor | @karukgirl | Feb 21, 2024

In reply to @gjs "Thanks for the invite. I am looking for to get more information on HCM." + (show)

Hello @gis, I found this from the Mayo regarding Hypertrophic Cardiomyopathy that you may find interesting:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Do you have HCM or HOCM?

gjs | @gjs | Feb 20, 2024

Thanks for the invite. I am looking for to get more information on HCM.

katiekins | @katiekins | Feb 13, 2024

In reply to @tjunca "It did provide much relief BUT the side effects of Camzyos (dizziness, head spinning, feeling sluggish)..." + (show)

I had exactly the same side effects sadly so had to stop the drug. I felt amazing for around a week but then the symptoms began. Left off for a week and started again but side effects reoccurred so stopped. I now feel awful so thinking of surgery. Are you having septal ablation or a myectomy? Keep well.

irishpeaks | @irishpeaks | Feb 2, 2024

In reply to @karukgirl "Hello there @stillstudying, and a warm welcome to Mayo Connect! You ask some great questions, which..." + (show)

Ironically I’ve been home the last few days with some chest pains and was instructed to rest, so I’ve been able to get some responses out in a timely manner.
I’m always glad to share my experiences.
One of the huge benefits of getting an ICD is that a lot of them can come with a monitor that goes in your home and will read/transmit data from your ICD to your electrophysiologist via cell signal (at least in my case that’s what I use). This saves trips to the doctor, can get you high quality readings very quickly, and it can all be stored for an impressive amount of time.
As far as sources for information, I would recommend contacting the device clinic of the hospital doing the implantation. They are usually a wealth of knowledge and resources.
I have been lucky enough to have an older gal that is like my grandmother who is very sharp and experienced help me out.
I have a Boston Scientific ICD and have spoken directly with them on several occasions and they were outstanding as well. They understand the importance and get things resolved quickly. I have had zero issues with the device, as it has worked flawlessly after some setup adjustments.
The designs are far less obtrusive and the battery life on mine was 11.5 years when new, so the maintenance is minimal.
They are literally a lifesaver and I can’t say enough good things about them, but they also pack a tremendous punch when needed. Your lifestyle will change to accommodate this to some extent, but it is worth it. Certainly beats the alternative.
Personally, I’m glad I got mine. It’s literally been a lifesaver.

Debra, Volunteer Mentor | @karukgirl | Feb 2, 2024

In reply to @stillstudying "Hi everyone. I was diagnosed around 2005, but I'm pretty sure I've had heart related symptons..." + (show)

Hello there @stillstudying, and a warm welcome to Mayo Connect!
You ask some great questions, which makes me think it is how you picked your online moniker 🙂
Here is a link regarding HCM from Mayo:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
and another from the NIH:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5248664/
Have you had a chance to poke around here in Connect? There is a lot of information to read about so many things, not just HCM.
Member @irishpeaks knows a thing or two or three about ICD's, as he lives with one. And the Camzyos group here in Hypertrophic Cardiomyopathy has been a wonderful place to learn about Camzyos and the ups and downs of being on it.
You are already doing the best thing you can do...learn as much as you can about what you have. That way you can be your own best advocate. Being informed can save your life!
Do you know if the cardiologist you've been referred to is knowledgeable about HOCM and Camzyos?

stillstudying | @stillstudying | Feb 1, 2024

Hi everyone. I was diagnosed around 2005, but I'm pretty sure I've had heart related symptons since the second or third grade, including abrupt unconsciousness with no warning or apparent reason and doctors could not figure it out. Last episode of that type was almost 50 years ago. Anyway, I've just been referred to another cardiologist for evaluation for the new drug so I'm going through another round of testing and recommendations,
including an ICD. I'm wondering if anyone knows of any recent reliable sources regarding SCD, ICD and 75 year old men with multiple risk factors in addition to HOCM. I've found some studies and journal articles, but I'd love to find more.

dave023 | @dave023 | Jan 24, 2024

In reply to @dave023 "Does anyone with HCM and AFIB have experience taking Amiodarone? -- to reduce the chances of..." + (show)

Amiodarone Update from @dave023

- Yesterday, I sat in on my Mom's appointment with her cardiologist and I asked if the Amiodarone could be causing the swelling in her feet and lower legs (because it's one of the listed side-effects)
- the doctor said "No". She has had a lot of experience with treating her patients with this drug, and she has never know it to cause this type of swelling.

So, I guess I ended up finding the answer to my own question. But, hopefully it will be useful info for other people in this forum

dave023 | @dave023 | Jan 23, 2024

In reply to @dave023 "Thanks for your detailed reply. @karukgirl I will respond and/or pose my questions in the order..." + (show)

@dave023

Thanks for your detailed reply. @karukgirl

I will respond and/or pose my questions in the order of your message.

Yes, I will heed your advice about not asking for, or dispensing, any medical advice. I joined this forum to get feedback from the members who have experience or knowledge (or referrals) related to specific topics.

Yes, my mother's HCM is most likely genetic. Her father died in 1958 at the age of 42. The official cause of death was a coronary thrombosis -- but it could have been caused by HCM. Yes, I have been tested, but I won't be receiving my results until next week.

Concerning my research into my mother's medications, I plan to do a separate posting because there is a lot to say. However, I absolutely agree that any concerns or suggestions about prescribed medications need to be discussed with your doctor(s).

About the swelling of her feet and lower legs, I don't think it's related to any kind of heart failure. Her heart seems to be working fine now, but today she will be getting the results of her latest ECG. It's probably just from her heart not having healed 100%, and her body trying to balance her intake of water, salt, etc., and her dosages of Lasix.
((However, for background info: Mom's thickened walls of her left ventricle (i.e. HCM) have been reduced by over 70% during the past year using Camzyos. As far as we know, her AFIB was only brought on by her weakened condition with Covid in late November (BTW - it wasn't her doctors that diagnosed her AFIB -- she saw it on her heart monitor and notified the nurse, who then notified the doctors). It was the severely deadly combination of her AFIB with her HCM that came very close to killing her -- but the doctors didn't realize this either, and sent her home after the AFIB was first diagnosed -- and again when she came back in by ambulance -- and then also tried to send her home 2 more times until I finally convinced them to take her condition seriously -- then, they finally realized what was happening and sent her immediately to the Critical Cardiac Care Unit, and even then she almost died -- but, she did manage to survive and started improving right after they shocked heart back into a normal rhythm))

So, about my experiences with things "falling through the cracks".....

Jump to this post

This is continuation of my response to the reply by @karukgirl

I am researching all of my mother's medications to mainly find out why they have been prescribed, what interactions they could have with other drugs, and what are the possible side-effects.

However, I am also doing the research because I have had a lot of experiences with 'things falling through the cracks'. In general, I have found that doctor's don't take the time to thoroughly look into the potential causes of their patient's symptoms (most doctor's don't even read the patient's file until they are actually in their office -- and then it's just a quick skim through).

In my mother's case, she has 12 different medications prescribed by 5 different doctors (and several of these prescriptions originated from the 10 or so hospital doctors who happened to be on duty during her 4 weeks in and out of the hospital over a 6 week period). Since her discharge on January 4th, her prescription list has had 2 significant changes to correct oversight errors:
- The original discharge medication list
- 1st change - due to duplication of powerful high blood pressure meds
- Metopropol and Perindopril
- and because Perindopril has a negative interaction with Furosemide
- 2nd change - mistaken removal of Furosemide in the 1st change
- Current medication list

Also, for her first hospital discharge on December 28th, the Furosemide was separate from her blister pack, and it was up to her to decide if she needed to take any pills based on her daily weight gain. She is 83. My Dad is 87 and isn't capable of being a care giver. They both have memory problems. So, unsurprisingly, after 2 days at home and taking 1 pill, she had to be taken back to the hospital by ambulance due to severe dehydration.

So, if I didn't take the time to do the detailed research using reliable sources like mayoclinic.org, I'm sure that there is an extremely low chance of any of my Mom's doctors doing it.