Recommendation

I have been extremely pleased with the care at Mayo in Rochester. The Cardiology, Neurology, and the Specialized Cardiological Clinic have been exceptional. I also asked for a complete physical and they found bladder and prostate cancer, kidney and liver disease that I was not aware of. I have had numerous surgeries and could not ask for better care.

Hello @jekcordle, and welcome to Mayo Clinic Connect!
It's a lot to process when you are first diagnosed with this condition, isn't it?

Here is a link to Mayo Clinic's information on HCM:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
...and here is another from another organization with more information:
https://www.4hcm.org/
It is important that you feel comfortable wherever you decide to seek treatment for HCM, so do yourself a favor and learn as much as you can. That way you will be able to participate in your treatment by being informed and educated. It's important even more that your cardiologist is well versed in all the treatments available and what will work best for you. No two of us are alike, and we all have different treatments we go through.

I am not an expert in anything, but I can share with you that before I was treated at the Mayo Clinic, I had several outside opinions and was diagnosed with conditions I did not have. Each facility I visited was kind, professional and I felt well treated. But I was still suffering with something so wrong, and I felt like I was going to die!

When I arrived at the Mayo Clinic, and was told what I had, and not only what I had, but I needed open heart surgery...I felt the blood drain from my brain, I was so stunned. My heart was enlarged and failing.
I knew I was in the right place for me. The care I got was unlike anything I had ever experienced...and I have worked in hospitals for over 45 years. That's saying something!

Do your homework, be a willing listener, and trust your internal voice.
I would say that most any facility will treat you as a whole person...there may be differing levels of that treatment however.
I may be partial to the Mayo Clinic, because I feel like they saved my life...but that's a good reason to be partial!
Do not let distance or convenience be your deciding factor for where you go or who you see.
You only live once, and every day is a gift and a blessing.
Are you located near a COE (Center of Excellence)?
Is your doctor up-to-date on all things HCM/HOCM?

@karukgirl, thank you for the resources and advice. To say my head is so full of questions is an understatement. As a retired teacher, I appreciate any resources anyone sends my way.

I had discovered the 4hcm site and have signed up with them. It provided me with a wealth of information that I wasn’t previously aware of.

I live in a state that does not have a center, so I am searching for a recommended center.

I appreciate that my cardiologist recommended I see another, more specialized cardiologist, where I am currently being treated; however, I still want a whole-person approach. Your advice will be beneficial in my search.

I am trying to narrow it down to my decision between Iowa and Mayo.

Again thanks for the information and please send anything my way you think would be beneficial.

@karukgirl, thank you for the resources and advice. To say my head is so full of questions is an understatement. As a retired teacher, I appreciate any resources anyone sends my way.

I had discovered the 4hcm site and have signed up with them. It provided me with a wealth of information that I wasn’t previously aware of.

I live in a state that does not have a center, so I am searching for a recommended center.

I appreciate that my cardiologist recommended I see another, more specialized cardiologist, where I am currently being treated; however, I still want a whole-person approach. Your advice will be beneficial in my search.

I am trying to narrow it down to my decision between Iowa and Mayo.

Again thanks for the information and please send anything my way you think would be beneficial.

@jekcordle ,
Good morning @jekcordle , Just a short message to say I don't think you can go wrong with either Mayo or Iowa City. I see a cardiologist and have also seen an EP at Mayo, Rochester and my daughter has a care team at Iowa that she thinks is excellent. We both have Apical HCM with apical pouch at the apex. This qualifies for an ICD. Because of my age (I was diagnosed at 78, am now 81) the risks of inserting an ICD can be greater than the benefit. Therefore, I decided not to do so. Because of my daughter's age, she definitely needed to have the ICD and is certainly pleased with her care team at Iowa. Good luck with whatever choice you make.