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Hi @rondar,
You are absolutely correct about wanting to consult an expert on HCM – Connect’s alumni mentor @cynaburst has always recommended the same.
Mayo Clinic has a long-standing hypertrophic cardiomyopathy program that provides highly individualized care. Specialists in the Hypertrophic Cardiomyopathy Clinic at Mayo Clinic diagnose and treat people who have HCM. Care is provided by cardiologists, surgeons, specialized medical assistants, nurses and genetic counselors with specialized training and expertise in HCM. https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-clinic/overview/ovc-20442502
You can read more testimonials from Connect members @badmac @sarah_e @sheim @dp52350 @knecht in these discussions:
– https://connect.mayoclinic.org/discussion/freaking-out-a-bit/,
– https://connect.mayoclinic.org/discussion/surgery-on-jan-30th/
I’d also encourage you to read, "Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit” https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/
@rondar, may I ask if you would share what's concerning you, at present, about the HCM diagnosis?
Replies to "Hi @rondar, You are absolutely correct about wanting to consult an expert on HCM – Connect’s..."
I had a myectomy at Tufts and they have a great team. I had my surgery done by Dr. Rastegar he did a great job and he has done the most myectomies than any surgeon. They treated me great their team is fantastic and so is that hospital yesterday was a year i had my surgery > 🙂
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I am concerned how my diagnosis may affect my kids and grandchildren. I want to ask about genetic testing for them.
My valvular Cardiologist did not tell me I have HCM until I asked. I had an aortic valve replacement and a myectomy. When I was researching myectomy I found this is was for patients with HOCM. So I asked him if I had this and he said yes. We have never addressed the subject again.