HCM-ers: Introduce yourself or just say hi

Hi im suzanne and im glad i found this group

Hello Suzanne @shampoou, I'm glad you found the Hypertrophic Cardiomyopathy group too. Welcome! There are many different topics here under the Hypertrophic banner, and I hope you are able to take a poke around at some of the topics on the list. How long have you known you have HCM? Is your doctor well versed in treatment of this disease? What are some of your concerns about the way HCM affects your life?

I was diagnosed with symptomatic obstructive HCM in May 2023. I’m under the care of UCSF and very grateful they took me on as a patient. As a very active nearly 69 year old woman who has always been ‘healthy as a horse’ it has been a huge adjustment. It took two ‘perfect storms’ - as my N.P. calls them - that ended me up in the ER by ambulance (in Jan 2023) to then get referred to a specialty clinic at UCSF for followup testing and diagnosis in May 2024. I’m starting Camzyos today. Trying to be brave and learn all I can. I have concern for my kids who may also have inherited the gene. Very glad to have found this support group.

Welcome to Mayo Connect @newtosohcm! I'm so glad you found this group. Today is the start of hopefully promising results with Camzyos. I am also glad to hear that you are being treated by someone who specializes in HCM and HOCM. @kelliw, @jaymaysea, @nbs are all on this journey too, and they have shared their experiences with others just beginning like you. I was told that there is a 50/50% chance of passing this on to your children. I would guess that UCSF would recommend genetic testing for your kids? And how fortunate you are that you survived an event that you ended up in ER! This must all feel so surreal right now, having just recently learned what you have, and now beginning a new drug. Yes, you are brave, and you are so correct to learn as much as you can about your condition. It is a blessing to be as healthy as you are. That is going to help you so much going forward. This group and the Camzyos group are absolutely awesome HOCM warriors! So welcome, again, and feel free to share with others how things are going. Do you know your EF and LVOT numbers so you can measure progress? When do you see your cardiologist again? Do you have a contact person that you can reach if you have questions or concerns?

Wow such a lovely speedy reply! Thank you. I’m in a rush to get to the pool but will definitely be back with some numbers. I’m so glad to be in touch with other people going through this💜

Enjoy the pool! Where I live in way far Northern California, we were 111 yesterday, 109 today. Ugh! Looking forward to having you come back!

I’m gathering the results of my EF and LVOT as well as Gradients as I read over my most recent ECHO report. I am an R.N. and a certified PHN (Public Health Nurse) (currently retired for now anyway) but feel like I’m on a steep learning curve with a ways to go! Yes I do have a great support person who answers my questions. She is a very knowledgeable N.P. working at UCSF in the HCM specialty clinic. I am very fortunate.

Oops I just posted a comment in response to you but pushed the ‘comment’ button instead of the ‘reply’ button.

Hi. Just a quick comment on genetic testing. I was advised that if my genetic test is positive, then my kids (who are in their 40s) need testing, But if negative, then they don't. In any case, while waiting for all this to happen, they have had screening echocardiograms and are fine.

Your description sounds just like mine in the sense that I thought I was "healthy as a horse' until I was diagnosed with symptomatic obstructive HCM in Sept. 2022. I am almost 68. I have now been on Camzyos for almost 4 month. I have always tried go for a 3-4 mile walk every day but found each year my symptoms were getting worse which involved not being able to walk up any incline or stairs, without having to stop and regroup, chest pressure, etc . This would come and go. Echos show that my septum is partially thickened and that partial area doubled in one year but is not thick enough to allow surgery. Once on Camyzyos my LVOT went from 101 and has settled at 24. My EF is still at 74. However, I have never had any other heart issues as in arrhythmia, no other thickening of any of my heart walls, normal chamber pressure in the rest of my heart, etc. And for all of these reasons minus the obvious diagnosis of OCMO my cardiologist strongly felt that I would be a perfect candidate for Camzyos. I have had no real side effects once they adjusted my dose for 5 MG to 2.5 and haven't felt this consistently great in years. If you have the time read through this thread. Very few people have the same heart issues. My cardiologist is at Washington Univ. where they were and still are part of the research for Camzyos and have a division in cardiology just for HCM. I had genetic testing which did not show that I have the gene but the research cardiologists think that it is always genetically linked. There are many gene sequences they can test for HCM and the most common one they used for me did not match but that doesn't mean I don't carry the gene. I am excited for you and it sounds like you are in terrific hands. My feeling is that we are all very lucky that this research is going on now and even if our children have the gene and display symptoms for HCM they will be treated earlier and with more knowledge.