HCM-ers: Introduce yourself or just say hi

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. 🙏🏼

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?

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 @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?

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. 🙏🏼

Which gradient would be helpful? I am still not sure what all of this means.

Hi Colleen. I am a heart patient with a twenty year history of heart issues. I have had a heart attack, double bypass, have 11 stents and last summer had an aortic value replaced. On July 5, I visited my cardiologist and was told that my total cholesterol was 91 and triglycerides were 170 which is down from over 300. Then on July 10 out of the blue I had terrible heart pain that two nitros didn’t relieve. Bottom line I was diagnosed with bradycardia and some QT prolongation. I was put on Florinef .1 mg and Lexapro dose was cut in half to 10 mg. I am so frustrated because I have been so active in recent months and now this.

Hopefully all turns out well for you.