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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
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".....
Replies to "Thanks for your detailed reply. @karukgirl I will respond and/or pose my questions in the order..."
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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.