HCM-ers: Introduce yourself or just say hi

Hello Colleen,
Katiekins here from the U K. Can’t understand why I have to sign in everytime I come onto the site to read very informative comments. Thank you for all the marvellous work you do. 🙏🏼

Hello Colleen,
Katiekins here from the U K. Can’t understand why I have to sign in everytime I come onto the site to read very informative comments. Thank you for all the marvellous work you do. 🙏🏼

Hi @don69, and a warm welcome to Mayo Clinic Connect!
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
I do not know if you have had an opportunity to poke around here on Connect or not, but I have posted a link to the Camzyos support group. This is an amazing support group and you can learn a lot from them. I would highly recommend you reading some of the posts there.
@kelliw and @jaymaysea are two Camzyos troopers! I hope you read their stories.
I think anyone would be anxious about starting a new drug, so you are totally not alone. In fact, you are in the best company here on Connect. Check out the Camzyos link I sent.
Were you just recently diagnosed with HOCM (HCM with obstruction) or have you known and are now symptomatic enough for Camzyos?

can you send me the camzyos link? i’m having trouble finding my questions and also responses and also the other camzyos posts. Also, do you know any other places there are camzyos support groups?

Hi there @katiekins,
I am not sure why sometimes I have to sign back in either, but at times I do.
I am on Connect every day and it comes to my email inbox as the Daily Digest...is this how you get yours too?
With the Daily Digest I simply click on it and away it goes.
I'm happy that you find this site supportive and informative. It has been for myself too.
I know you did not ask me, you asked @kelliw about her gradient, but mine was high like yours. I think at one time it was 76 or 77. It's down to 70 now after my septal myectomy.
The afternoon before my open heart surgery the team discussed my mitral valve and the possibility of replacement vs repair. Turns out it was just fine, but because of the anterior motion from the high gradient it looked like it needed help before they got in there.
I only mention this because you mention you need mitral valve repair shortly and this is food for thought. I understand valve surgeries can be done transcatheter now...is this the plan for yours?

Hello Debra, the e.mail comes from Mayo clinic but don’t know how to get to settings on my Mac computer! Silly me. It didn’t happen before so will just have to sign in each time. I don’t believe I am having transcatheter repair. I am supposedly having a minimally invasive repair/replacement but am looking for a robotic repair but believe only one surgeon does robotic in the U K. I have to sign a form that incase the surgeon has to go in from the front I agree. I was shocked when he said that it’s my mitral valve in May so have to accept what he says. It was so quick I felt I didn’t ask what I wanted to ask. He also said Camyos wasn’t for me as thickening is only 1.5 mms but gradient can go up to 111. On valsalva. I wonder why yours is still high though. This is a wonderful site to get information from so thank you all for your input, Do you feel better after your myectomy? Good wishes to you. 🙏🏼

Hello Debra, the e.mail comes from Mayo clinic but don’t know how to get to settings on my Mac computer! Silly me. It didn’t happen before so will just have to sign in each time. I don’t believe I am having transcatheter repair. I am supposedly having a minimally invasive repair/replacement but am looking for a robotic repair but believe only one surgeon does robotic in the U K. I have to sign a form that incase the surgeon has to go in from the front I agree. I was shocked when he said that it’s my mitral valve in May so have to accept what he says. It was so quick I felt I didn’t ask what I wanted to ask. He also said Camyos wasn’t for me as thickening is only 1.5 mms but gradient can go up to 111. On valsalva. I wonder why yours is still high though. This is a wonderful site to get information from so thank you all for your input, Do you feel better after your myectomy? Good wishes to you. 🙏🏼

@katiekins, that is a lot of information to process! Have you had a second opinion? I don't like seeing you say you may just have to accept what he says...and that you didn't get to ask what you wanted to. I think when we hear something we were not expecting, and are shocked, our brain shuts down and we can't think of questions until after we have had time to process.
When do you see your cardiologist again?
Do you have a list of questions ready to ask?
This is your life! You need to feel confident about what has been proposed.
My gradient, if I recall was abnormal but not every time. Which was frustrating because I knew something was wrong. During surgery, with a medication that affects the heart my gradient was 216. The surgeon said I had severe HOCM and needed this surgery. It was a sad way to get validation I must say!
I just had an echo today. First in three years. I shall see what is new in the near future.
Best to you over there in the UK too!

I am surprised that it was so long since your last echo. Three years. I have one every year. I suppose different doctors have different ways of treating HCM. Please let us know if there have been any changes for you, I am concerned that the thickness will "grow back" over time (hope not).

Hey @walkinggirl!
We tend to fall thru the cracks here locally. I had my last echo in 2021, and he read it as 'normal' but Dr Ommen said it is not normal, but normal for after a myectomy. I don't have a lot of confidence in the knowledge of all things HOCM/HCM here, so I just didn't bother to go back.
I was cancelled for a knee surgery last month because the anesthesiologist was not comfortable doing general on me and wanted it done in a hospital rather than OP surgery center.
Then the ortho decided I should be cleared pre-op.
Should have done that before, and I did ask...sigh.
So the only reason I had one Friday was for surgical clearance. But even if they say it's fine, I just don't trust them that they know or listen. It's a rock and a hard spot for sure!
The echo was less than 5 minutes. She did not have me do Valsalva, really what is this echo going show? I did ask the tech if this would show the septal thickness and she said yes. I'm as curious as you are! Thanks for asking 🙂