1. < Hypertrophic Cardiomyopathy (HCM)

Myectomy Needed

Posted by hopenr @hopenr, Feb 21 4:13pm

My cardiologist in Boulder strongly suggested to me that I get a myectomy to correct the symptoms of HoCM. He suggested the Mayo of course but said doing it in Boulder would be ok. The difference is if I go to the Mayo, I am alone the whole time whereas if I stay here, I have friends and family that can visit and uplift. I am seeking advice and experience from you all that have had this done. Thank you!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

brumasterj | @brumasterj | Mar 29 9:25am
In reply to @bwburchette "I was in the hospital for 5 days. Had my surgery on a Wednesday and discharged..." + (show)
@bwburchette

I was in the hospital for 5 days. Had my surgery on a Wednesday and discharged on Monday. Fortunately, had no postoperative complications. We ended up staying an additional 5 days in Rochester before flying home. We stayed at the Berkman Apartments- across the street from St Mary's Hospital. They informed us that they reserve about 80 units for patients from St Marys. Our 2 bedroom apartment was perfect for our needs and allowed my wife a good place to rest at night. They informed us we could stay as long as we liked as long as we kept them in the loop regarding anticipated departure date.

Regarding recovery, it depends how you define recovery. Although I had fairly pronounced fatigue for a few weeks, I can honestly say that I saw some day to day progress from the beginning. You take a few steps postop day 1 and then progress daily from there. By one week from surgery I was walking a total of 2 miles per day- divided over several relatively short walks.
Over time, I reduced the number of walks per day but increased the distance. I was advised not to return to work for 8 weeks. No driving for one month . No lifting over 10 pounds for 2 months. Coughing cause some pain for several weeks and sneezing- avoid at all costs!. I am finally able to sneeze one year our without having much pain.

Don't get discouraged during early recovery. There will be some fatigue and it will not be easy, but know that you will get stronger over time. Do everything they advise you to do. walk and then walk some more. If possible, get enrolled in a cardiac rehab program. I feel so blessed . I am nearing my 62nd birthday and can do things now that I could not do in my late 40s! I have no regrets whatsoever from having gone through this and I hope you will look back with the same perspective soon!

Jump to this post

If you dont mnd sharing what is the cost of the appartments? I reserved spring hill suites for june and its $114 per night
I reserved 14 days because they told me to prepare for 10-14 day period
Thanks for sharing ykur info

REPLY
hopenr | @hopenr | Mar 29 9:58am

I have found beautiful VRBO's with recliner chairs, 2 bedrooms, kitchens- quiet for $117/night. I am rethinking that now.

Good luck to everyone!

REPLY
mustang68 | @mustang68 | 6 days ago
In reply to @brumasterj "Thanks for asking! I suffered two back to back heart failures in oct and nov The..." + (show)
@brumasterj

Thanks for asking!
I suffered two back to back heart failures in oct and nov
The first one our local hospital diagnosed me with pleurisy and pneumonia, the second one they said i had heart failure with LVOTO.
I then went to the mayo clinic and they said i had been mis diagnosed for years and had had several exercise induced heart failures.
Since being on camzyos yes im doing more mileage on my mountain bike than i have in years but im still dealing with a heart murmor when i hit harder hills or strenuous fast movements.
Thats because i still have the obstruction.
Im 56 and very active and feel that i want to eliminate the obstruction with surgery so i can get back to my life style!
This has stopped me from running and strenuous activities.
If i was 70 and slowing down i would probably consider staying on camzyos.
The other reason im not staying on camzyos is because the protocol to stay on it!
Monthly trips to phoenix which is 7.5 hours away 1 way.
So the trips to phoenix are time consuming and expensive.

Jump to this post

Hi. What is your gradient on Camzyos? Also, how thick is your septum? I’m at 19mm septum and my gradient with Valsava is 44. Some say it’s just not high enough for intervention but I remain symptomatic. I want to pursue ASA as a next step.

REPLY
2 replies
hopenr | @hopenr | 6 days ago

I did not qualify for Cameos. At rest, there appears to be an LVOT gradient of approximately
44 mmHg. With Valsalva, the peak gradient increases to 150 mmHg. I am on Verapamil and am not symptomatic.

REPLY
1 reply
brumasterj | @brumasterj | 6 days ago
In reply to @mustang68 "Hi. What is your gradient on Camzyos? Also, how thick is your septum? I’m at 19mm..." + (show)
@mustang68

Hi. What is your gradient on Camzyos? Also, how thick is your septum? I’m at 19mm septum and my gradient with Valsava is 44. Some say it’s just not high enough for intervention but I remain symptomatic. I want to pursue ASA as a next step.

Jump to this post

With camzyos my resting is 13 and with valsalva its 38
So camzyos has allowed me to be more active to an extent! I cant do quick burst or ride big hills it causes my heart murmor to kick in.
Im scheduled for surgery in June

REPLY
brumasterj | @brumasterj | 6 days ago
In reply to @hopenr "I did not qualify for Cameos. At rest, there appears to be an LVOT gradient of..." + (show)
@hopenr

I did not qualify for Cameos. At rest, there appears to be an LVOT gradient of approximately
44 mmHg. With Valsalva, the peak gradient increases to 150 mmHg. I am on Verapamil and am not symptomatic.

Jump to this post

Wow thats crazy
I was at 48 resting and 122 valsalva and was put on camzyos immediately by the mayo doctor.
My local doctor tried the metropalol then verapamil neither helped!
So i went to mayo and like i said immediately put me on 5mg

REPLY
1 reply
brumasterj | @brumasterj | 6 days ago
In reply to @mustang68 "Hi. What is your gradient on Camzyos? Also, how thick is your septum? I’m at 19mm..." + (show)
@mustang68

Hi. What is your gradient on Camzyos? Also, how thick is your septum? I’m at 19mm septum and my gradient with Valsava is 44. Some say it’s just not high enough for intervention but I remain symptomatic. I want to pursue ASA as a next step.

Jump to this post

My septum is 19 as well
But it interferes withe aorta and the mitral valve causing regurgitating when the heart is stressed

REPLY
hopenr | @hopenr | 5 days ago
In reply to @brumasterj "Wow thats crazy I was at 48 resting and 122 valsalva and was put on camzyos..." + (show)
@brumasterj

Wow thats crazy
I was at 48 resting and 122 valsalva and was put on camzyos immediately by the mayo doctor.
My local doctor tried the metropalol then verapamil neither helped!
So i went to mayo and like i said immediately put me on 5mg

Jump to this post

My local cardio sent me to Dr Gill from the Cleveland Clinic where they first experimented with Camzyos. Dr Gill had me to a VO2 MAX treadmill test followed by an echo. Apparently I had no problem and he said it depended on quality of life. I was only ever taking 1/4 of the normal verapamil dose. My local cardio urged me to take it as prescribed. I did and I have been asymptomatic since. I am still going to Mayo to meet Dr. Dearani (they are friends) and see what he thinks. I think I would rather have the surgery than have to rely on ever changing prescriptions, dosages and side effects.

REPLY
brumasterj | @brumasterj | 5 days ago

I really think its how a persons LVOTO shows up of course when exercising or stressing the heart.
My resting in 2022 was 22
They didnt do a valsalva on me at the time.
So in 2 years i went from 22-48
So listen to your body
Im 57 now and still try to be very active but this has really slowed me down so im looking forward to being done with the obstruction and no meds!:)

REPLY
View MoreView Less
Please sign in or register to post a reply.