Diagnosed with HOCM last year. May be time for surgery

Hi - my husband was diagnosed at 67 with HOCM. He has always been an active, healthy fit person but out on our property one day, he felt pressure in his chest going into his arms. Never one to go to the doctor, except for the occasional cold or bug, it turned out he had a serious problem. Initial testing was done pretty quickly with a referral to Mayo here in Phoenix. Alarmingly, the referral was to the heart transplant department. More tests and a seemingly long wait resulted in the decision that he was not a candidate for a transplant at this time. There was obvious concern about his lack of ongoing medical care over the years. After the implanting of an ICD, he was referred to Mayo in Rochester for a septal myectomy, which he had June 2016. This was 6 months after initial diagnosis. Even though we live within 60 miles of Mayo here in the Phoenix area, they do not do this surgery here. Mayo recognizes this surgery must be done by very experienced doctors. I can't encourage you enough to go to Mayo if you eventually need surgery.

My husband's surgery went very well. I will be honest and include that he did have complications that turned a 5 day hospitalization into 12 but those complications were unique to his situation so it is important to recognize that this doesn't happen to everyone and is not the norm. He has now fully recovered and is doing very well. He will always have his ICD because he has arrhythmia issues but other than that, he says he feels so much better and feels 20 years younger. I have no doubt he was having problems long before he recognized he might be having heart issues.

HCM has a strong genetic component. His father died suddenly at 67, his grandfather at 61. Because no autopsies were done, the deaths were reported as "heart attack". While we will never know, they both likely died of sudden cardiac death, which is one of the risks of HCM. I share this because it is important for children and siblings to be checked for HCM when someone is diagnosed with it. I encourage you to continue to follow up with your doctor and talk to family members about being checked out too. Best wishes for the future.

I was diagnosed with HCM in 2014 after having sever fatigue and shortness of breath in 2013. The thickness of the muscle was enough to require surgery at that time, however, a trip to Duke University Hospital with one of the cardiologist told me that if I wanted they would do the surgery but it would take a year to heal and that after a few years I would feel bad again due to the related hormones released with this condition. Tomorrow, Monday the 27th and 28th I am having another echo and stress/with contrast done and will see the doctor in april. After reading some info on here it sounds as though I have not been well informed. My cardio is a great doctor but not a specialist in this disease)HMC) Should I request another doctor(specialist) about surgery. I am currently taking Trope at this time but still experiencing a lot of shortness of breath and a lot of fatigue. I should also mention that I am turning sixty in aug., and have fibromyalgia, also. Frustrated...

It definitely sounds like you could use a second opinion from a HCM specialist. There is one at Duke. I believe his name is Dr. Wang. If I were you I would make an appt. to see him.

Thank you will ask my cardiologist about him

I just did a little research and I believe there are two docs I have heard of at Duke with knowledge of HCM:
James Daubert and Andrew Wang.

Hi @pj57,
I add my welcome to @cynaburst's. I hope you can get an appointment with an HCM specialist at Duke and close to home. If you'd like to consider a second opinion at Mayo Clinic, here is the contact information http://mayocl.in/1mtmR63. Please let us know how it goes.

If you'd also like to share about fibromyalgia with Connect members, feel free to join this group "fibromyalgia pain" http://mayocl.in/2hgUGcv

Hi Barbara, I'm 51 and know first hand exactly how you feel! Thoughts and prayers to you!