HCM-ers: Introduce yourself or just say hi

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".....

Hello again @dave023 ,
I admire your dedication to finding out how to help your mother. Here on Mayo Connect, we are not doctors (although some members actually are doctors) but for the most part we are patients or caretakers of patients and we have to be careful about dispensing medical advice. We can share our stories about what we take and what has worked or didn't work and what we did with what we take and how it made us feel. Whew! That was a mouthful!
Anyway, I had two things come to mind reading your post along with some of your other posts:
Your mother has had HCM for all her life. It's most likely genetic. Have you been checked?
Second, I think you need to be careful when you are adjusting your mom's medications. They are prescribed the way they are for reasons, and if she is having issues with any of them you need to let the doctor know right away. I get how people can "fall through the cracks" in today's healthcare system, and mistakes can be made in dosage or drugs prescribed that interact with other drugs when more than one physician is involved. Just be careful making changes based on your own knowledge.
Third (I just thought of this!) before I had my open heart surgery (septal myectomy) I was on all sorts of beta blockers and calcium channel blockers. I did not like them and they did not like me. I had been misdiagnosed for several years and my feet were swelling all the time. I was exhausted when I woke up each day. I could do nothing without my heart racing in the fast last. The aftermath of eating a large meal was not a good thing. The list goes on. It turns out my heart was actually failing. Not like congestive heart failure, but similar. Your mom sounds like she has some of those symptoms. My heart failure was discovered at the Mayo Clinic, after my third opinion. They did two surprisingly simple tests nobody thought to do before; a chest x-ray, which showed an enlarged heart and a lab test (BNP) that showed failure.
Afib, untreated can lead to heart distress because it's working so hard. HCM doesn't help either. I am sharing this with you to maybe shed some light on the feet swelling and perhaps it's not the medication.
You sound like you have gathered a lot of information for her next visit, when does she see her cardiologist again?

Does anyone with HCM and AFIB have experience taking Amiodarone? -- to reduce the chances of AFIB returning -- and what dosage(s)?

Did you have swelling in your feet and/or lower legs that was never eliminated by adjusting salt intake, water intake, and lasix (furosemide)? Because -- one of the side-effects listed for Amiodarone is swelling of the feet and/or lower legs.

If someone has experienced this, did you then reduce or eliminate the Amiodarone?
If so:
1. Did the swelling of the feet and/or lower legs dissipate or be eliminated?
2. Did you have another instance of AFIB? -- and was it debilitating? or just transient?

Thanks Debra. My Mom was defribrillated mid-December, and has improved every day. She is now out of the hospital and doing 'OK'.

Hello @dave023, and Welcome to Mayo Connect. I'm glad you are here and that you are looking for other people with HOCM/HCM because your mother has been diagnosed with it.
I'm sorry that your mother is having such a terrible time. It must have been frightening for you both to go through that. Afib is nothing to fool around with, and needs medical attention.
I believe it is true in a lot of cases that people with HCM are not diagnosed right away. That was true in my case and I know of others as well. The symptoms are so much like many other heart conditions and this is a sneaky disease. Have you done much reading on here yet? There are folks with PVCs and Afib who have HCM as well, so hopefully a member will jump in with their experience.
Do you know what the plan is for your mom? Is her cardiologist experienced in the treatment of HCM? Are they thinking about a defibrillator for her?

Does anyone else also have to deal with AFIB in combination with HCM? Maybe there is already another forum thread for this?

Hello All,

My mother is 83 and has had undiagnosed HCM for her entire life (as I'm sure is the case for most people with HCM). About 10 years ago she started showing symptoms of being short of breath and had decreased energy. These symptoms continued to become more severe. It wasn't until about 3 years ago that a doctor took her seriously enough to do in-depth testing and she was finally able to receive the diagnosis of HCM.

I have joined this forum because my mother was recently hospitalised, and was very close to death due to undiagnoised Atrial Fibrillation (AFIB). I could go into all of the details of her total of about 30 days in and out of the hospital since the last week of November, but she is now home and doing 'OK'.

For my questions, I will post them each separately to make is easier to follow the forum comment threads for each topic.

Greetings to all. I’m still trying to find someone who has had a TKR while on Camzyos. In my rural neck of the woods the doctors have not heard of this drug and our cardiologists are completely overwhelmed due to short staffing. I’m most concerned that the anesthesiologist knows there are certain drugs that are contraindicated to Camzyos, including commonly used anesthetic drug. Thank you for any tips on how to navigate this.

Thanks Debra for your thoughtful and kind reply! So nice to talk to someone else who has experienced HOCM. Yes, bending over to tie shoes and tachycardia happened to me too. (Helped to squat down rather than bend over.)
As you said, my main hope by posting was to help others with what they are going through before or after surgery. I know what it felt like to feel “adrift” as it was all so unfamiliar.
It is so encouraging to think one might keep improving for a year! Wow, thanks for sharing that. 😊
I am on Bisoprolol for palpitations.
Thanks again for your response and being a volunteer mentor!

Happy New Year and a big Welcome to Mayo Connect @erica8082!
Thank you for sharing your story with the Hypertrophic group. Your determination and perseverance and refusal to give up certainly helped you regain your life. And time too, of course!
We are all so different and no two will have the same outcomes. I was a lot like you before I had surgery. I was super active and was so depressed about what HOCM had taken from me. It was so hard to understand how this ridiculous heart disease could rob me of all I loved to do. I would laugh, but not because it was funny, at how just bending over to tie my shoes would put me into tachycardia and I'd be gasping for air.
My recovery was not as terrible as yours. I'm sorry you had to go through all that for as long as you did. But you made it back and you are here on Connect to give hope to others! So thank you again for sharing. 4 1/2 months is not that long ago. I was told it can take almost a year for the heart to completely heal from the inside...so you may be even more happy further down the road at what you can accomplish with your heart all patched up and ready to go!
You are right about getting out and walking as much as you can as soon as you can. Good advice! Are you on meds for the palpitations?