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← Return to HCM getting worse?
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@karukgirl
Thank you so much for responding.
I have been diagnosed for about 13+ years as an adult. I am 67 now. I became symptomatic about two years ago getting SOB every 30-40 steps. Soon after I developed Afib. I do no have the obstructive kind. The septal thickness is 2.3 cms. I am now having to manage both afib and HCM and its been challenging. I am having my second ablation tomorrow and hoping it works better this time. Not sure how thick it has to get before surgery is contemplated …..I realize there are other factors also of gradient and scar burden which is 7% ( MRI last week)
I am consulting and under the care at the COE in Houston. HOuston Methodist Hospital. Is there a need to get my case evaluated by experts at Mayo? Any input would be appreciated. I am a member of the HCM society.
Replies to "@karukgirl Thank you so much for responding. I have been diagnosed for about 13+ years as..."
@leenag Hello Again
I started the self referral process with the Mayo Clinic in Rochester and I got connected to Cardiology. They said they cannot do anything unless they receive a referral from my local cardiologist here. Is this what you also encountered. Is Cardiology the right department or is there a dedicated HCM center I should be connecting with. Also they don’t have a tele visit option as a first appt. I told them it’s just a consultation and assessment. I have MRI and ECHO that is from Dec 2025, that I can share etc. I guess if you could kindly share the process and what is involved I would appreciate it. I am in Afib now and not able to travel …….so not sure how all this is going to work. Did you use Rochester MN or another location. Thank you so much for your time and help with navigating Mayo.
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@leenag
It seems like you are having a really tough time. We are the same age and I have very few symptoms after my open heart surgery 5 years ago.
I would suggest to you that it would not hurt to be seen at the Mayo Clinic in Rochester.
They are the leading experts in the treatment of HOCM/HCM.
Here is a link to refer yourself:
http://mayocl.in/1mtmR63
It is vitally important that you understand your condition and that whomever you choose for your care team is on top of your condition.
A COE may be great in many things, but are they great in HCM?
I went to two different COEs. One in my home state (CA) and Mayo in MN.
I also went to the hospital I worked for at the time.
It was not until I was at the Mayo Clinic all became so very clear.
This is your only life and you need to go where you feel the most confident, and that may be out of your comfort zone and zip code!
I would not hesitate to get a second or third or even fourth opinion! You need to take care of you!!