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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 28 11:57am | Replies (877)Comment receiving replies
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?
Replies to "Hello again @dave023 , I admire your dedication to finding out how to help your mother...."
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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".....