Mavachemten

@cash298
Sorry to hear that your appointment is not untill March 20. I certainly would contact the Cardiology Dept. and see what can be done. A followup angiogram is also a consideration. We as patients need to be our own best supporters.
Best to You!
Best to You!

Another Echocardiogram certainly should be done prior to your March appointment.

@cash298 Please find out if there is a waiting list in case of cancellations. If so, try to get on it. Sometimes that works to get an appointment sooner.

Hi @cash298, So sorry you are going through this, it's hard to feel badly, to be so limited, and to see those numbers, the diagnosis, it's all a lot ; can feel overwhelming. And waiting to be seen is hard. I write to encourage you to get on a cancelation list, to see if you might be seen sooner; that did work out for me with one HCM center of excellence appointment that was scheduled for 5 months out, became offered to me after only 4 weeks out, when someone canceled on short notice, and they offered to see me the next day

or, ~ Is there any other HCM clinic you'd consider, and have the energy to see if you might get a sooner opening there? I wanted a 2nd expert opinion, which was not local to me, and when I called, by surprise was offered a time for that 2nd opinion that was before my 1st opinion was scheduled, so I took that.

Hope one way or another you get a timely appointment, and medical care. And some relief with the Camzyos.

Hello, mustang68,
Started cam on 11/08 and had my first required echo yesterday. My gradiant was much improved. I asked if it would be expected that I would continue to improve and the doc indicated that they don't really know...Each of us respond differently as time goes on. It's the first time in thirty years that they couldn't hear a murmur...I'll take it...day by day, right? I thank the good Lord for the scientific studies and brave individuals in the trial studies that created this medication...it's a miracle to me that my tissue has responded in such a short period of time.
I wish you good progress and hope...it happens!

@karukgirl what was the reason for open heart surgery? I have been wondering if there is a certain septum measurement where they recommend myectomy?

@rebaheizer, hello.
I had open heart surgery (septal/papillary myectomy) for HOCM.
My heart was failing and my quality of life was miserable. I will never regret having the surgery.
There are protocols that many Center of Excellence centers follow, but within those protocols are individual considerations.
So your question is hard to answer.
Not all septal measurements are the defining reason for this surgery...it is the whole package put together and the team approach to each individual and their own unique test results plus symptoms and quality of life.
Did that make sense? I may need more coffee!
I've heard numbers thrown around, but again you can be very symptomatic at a lesser septal thickness then somebody with a larger septal thickness. It all depends.
Certainly, septal thickness is a consideration, but it's only part of the reason for open heart surgery to correct the LVOT/septal hypertrophy.
Have you had a chance to talk to your HCM expert about these questions?

Thanks. I was on Camzyos for three months and my ef dropped to 30. I have
a second echo since stopping the medicine scheduled in two weeks with a
follow up immediately afterwards. I don’t think I have the nerve to go
back on or even if they will suggest it. I’m just trying to make notes on
what to ask. Thanks for your comments.

*Reba D. Heizer*
*www.rockbridgevineyard.com
< http://www.rockbridgevineyard.com/>www.rockbridgevineyard.com
< http://www.rockbridgevineyard.com/>*

I was part of the initial test group at UCSF. Mavacamten saved my heart. And I felt much better on it.
Tomorrow, though, I have to show up at UCSF early for an AVJ node ablation. Along with HOCUM, I have a severely dilated left atrium. My heart rate is 109 on average, and my heart is wearing out. Terrified about tomorrow, but I have to trust the doctors.

jih123...Thinking of you...hope it all went well...I pray for your courage and healing...