HCM-ers: Introduce yourself or just say hi

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

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?

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

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?

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?

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".....

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.

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

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.

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?