HCM-ers: Introduce yourself or just say hi

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I'm tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

Thank you for your encouraging comments. i havd heard really great things about Camzyos too from the burses at Scripps where i go. one nurse’s husband died of HOCM before the medicine existed and she said from what she’s seen she would sell her house if she had to in order to get on it!

Thank you for your encouraging comments. i havd heard really great things about Camzyos too from the burses at Scripps where i go. one nurse’s husband died of HOCM before the medicine existed and she said from what she’s seen she would sell her house if she had to in order to get on it!

It sounds like you have a very full life in your current condition, so I understand that would make it hard for you to change your course of action midstream. For me, it would be about quality of life. If you feel strongly about keeping your schedule and traveling to teach, go for it! You seem to have found a way to be comfortable enough to pursue your passion. (You did mention having to use oxygen on long flights which seems limiting, but not impossible to manage) I did fly each month that I have been on Camzyos , felt great, and have never used oxygen. Camzyos will be here when you return. I do know that once you are approved to use Camzyos, it is a one year benefit and is approved for that time frame only.

You asked about my Metoprolol use. I had to increase my Metoprolol when I increased Camzyos to 10 mg. I take Metoprolol for Mitral Valve Regurgitation.

As per your concern about your heart stopping. I was assured by my cardiologist that anyone approved for Camzyos meets a certain criteria and the way I receive an ECHO every 22 days, then meet with my cardiologist helps me feel like I am being tracked very closely. I do not believe they would approve you without believing you were a great candidate for the medicine. As a matter of fact, after talking to the nurse at the Mayo Clinic's Hypertrophic Cardiomyopathy office in Scottsdale , AZ, I learned that nearly all of their patients on Camzyos are experiencing results similar to mine. That is so encouraging. (I am a patient at the U of W in Seattle) I would love to hear more about your experience in the future.

As you will see I was quite unwell on it but we are all different. I take Verapamil twice daily of 80mgs could that be a side effect, who knows....Also very confused. Good luck on your journey.

Thank you so much for your reply. It's really helpful to hear your experience as we do have many similarities. It's amazing how much better you are. When you started taking it did they reduce your metoprolol? Did you fly at all in the first few months on Camzyos? It sounds like yours was worse than mine mine's about 50 with Valsava. I'm worried it will go down too much and my heart will stop! I'm 76 yrs old and am an author and travel to teach. I teach Buddhism and have many students around the world. I am currently scheduled to tour in UIS and Europe this year. If I start Camzyos I have to cancel my travel and teaching schedule and my students would be really disappointed. So I'm weighing the need for the medication with commitments I have made and can't figure out if I could wait til I finish my commitments (Dec) or if I should cancel. I find long flights prticularly hard and use an oxygenator. I can't drink alcohol since I started Metoprolol I didn't feel good. I can walk u stairs and hills and ride my bike.

Camzyos changed my life. I am very sensitive to drugs as well. I was nervous to try it and my cardiologist gave me great information to help me feel confident in starting Camzyos. I have been on it for 9 months now and had a few difficult moments when I didn't feel well. I am currently on 15 mg once a day and my Valsalva went from 86 to 19. (lower than 30 is normal) I feel better and am able to walk regularly, read out loud to students without losing my breath and generally function at a higher level. (i used to have to park very close to the entrance of a building, couldn't use the stairs, and absolutely could not walk uphill) I take Metoprolol 75 mg twice a day. I travel a fair amount and my heart feels way better now as i fly. I hope you find the information you need to try Camzyos. It really is a hassle to have an ECHO so often as they track your results, but I have found the effort quite worth my results. Since we have so many similarities, I want to add that I am 61 years old, work full time , do not drink alcohol or take any other drugs except my heart meds. I hope my experience helps you. I find the MAYO clinic blog very helpful on this journey.

Hello there @katiekins,
With the septal myectomy, the O in HOCM is gone...the obstruction...but we still have HCM. I also had severe mitral regurgitation and aortic valve stenosis. That's what my cardiologist told me.
When the surgery was over...these were not my diagnoses at all. It was all due to HOCM.
My septal thickness was not so awful either...but when Dr. Dearani came to talk to me after surgery, he said I had severe HOCM. It's such a weird condition. Some days are great, some days are so difficult. Sometimes your echo looks pretty good, sometimes Valsalva is not bad. I
was prepared to have valve surgery too...but it was fine.
Thank goodness you stopped taking a drug you didn't need!
When you mentioned minimally invasive mitral surgery, do you mean TAVR?