Afib, HOCM, and PFO

Posted by andrewbradlyn @andrewbradlyn, Apr 20 6:39am

During my recent ablation for Afib, I had a TEE and they found a PFO with left to right shunt (new finding for me), I also have HOCM and waiting to start Camzyos. I haven’t had my follow-up appointment with the EP yet but hoping someone may have had a similar experience and can tell me whether the PFO is an important finding that may impact my HOCM treatment (or not). I’ve read a lot about PFO studies and trials but haven’t been able to find much information about PFO in this setting (and without prior strokes) and looking to find out what to expect (or whether I should just forget about it). Thanks!

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

Debra, Volunteer Mentor | @karukgirl | Apr 20 10:28am

Hello @andrewbradlyn,
It looks like this is your first post, so an official Welcome is in order.
Welcome to Mayo Connect!
You certainly have a lot to consider now that you know you have all these diagnoses PLUS a new diagnosis, PFO (patent foramen ovale). How fortunate you have not had any negative effects (that you know of) especially a stroke. But you must be anxious knowing you have it now. I don't know if you have had a chance to poke around here on Connect or not, but here is a helpful Mayo Clinic article regarding PFO.
https://www.mayoclinic.org/diseases-conditions/patent-foramen-ovale/symptoms-causes/syc-20353487
While we wait for others who may be able to share whether they have HOCM, Afib and PFO, I am going to go out on a limb and assume your cardiologist is up-to-date with the latest information in HOCM and Camzyos? Camzyos has a list of interactions and side effects, and knowing you have the PFO is certainly something a cardiologist would want to take into consideration as you begin treatment for HCOM.
Being educated about what you have is important, as you need to be your own best advocate.
May I ask how long you have known you have HOCM? When is your follow-up appointment? Have you prepared a list of questions to ask?

andrewbradlyn | @andrewbradlyn | Apr 20 11:23am

In reply to @karukgirl "Hello @andrewbradlyn, It looks like this is your first post, so an official Welcome is in..." + (show)

Thanks for your note—I do have a cardiologist who specializes in HOCM and have an appointment soon. I’ve also got a list of questions prepared so I’m in good shape from that standpoint. Diagnosed with HOCM in 2023 and Afib in 2021 although I had had episodes prior to that time. Like everything else, it’s complicated and I’m trying to learn as much as possible.

manuelpo | @manuelpo | Apr 21 8:57am

Hi @andrewbradlyn:
My wife had PFO and it sealed really well the open part of her heart from where the blood cloth went through before which caused her stroke 14 years ago. The PFO had a test done later (some kind of bubble test) that proved the PFO was well done and provided a good seal in the open part of the heart so my wife have not had stroke anymore. She still takes blood thinners to avoid blood cloths. I am the one who is taking camzyos now 5 mg for my HOCM and it appears to work well for now (4 weeks on this medicine) for my pressure on my chest is a lot less but the gradient was so high over 200 that I am sure the doctor will have me on this treatment at least 12 months. My first echocardiogram was yesterday.
Any connection between a PFO and HOCM can only be answered by a highly experienced Cardiologist specialized in both HOCM and PFO which is not very common to find. The keep point with HOCM I notice is the more worried or stressed I am the worst gets and the more relaxed I am the better it feels some with some improvement in my symptoms.
I have a very healthy diet when I eat and I eat a lot less food so my feet and legs do not swell as before and I take walks every single day at a local store in case the weather is too cold or too hot. I hope this helps and I hope you feel better.