Switching cardiologist

Hi @jojs, that's a good question. I get what you mean about being thankful for having a cardiologist at the Mayo, but your comfort with that person is important too.
Have you tried going on the patient portal and checking to see if one of the nurses can help you?
I don't know much, but I know that the Mayo is the best in the world and I would just assume that they would take into account a patient's feelings. There are many other cardiologists on staff at Mayo...you need to be comfortable with who you see. The only thing I can think of is to try using the patient portal to ask for help.

So far (diagnosed 3 months ago) my first cardiologist back in October, '24, never mentioned or wrote down the specific words "hypertrophic cardiomyopathy (HCM)" which would have REALLY helped me because I didn't know then NOT try to clean up hurricane debris in high heat and humidity in FL along with NOT hydrating enough in Nov. '24, putting me in the ER and hospital with a heart attack (heart "injury"?), and then my second FL local cardiologist not pre-reading my copious medical records after hospitalization and telling me what I've already read in my own records--what a waste of time! So when I return to MN in May, I'm going to try to find a good HCM cardiologist at Mayo!!!It'll be a 3 hr roundtrip drive to Rochester every visit, but worth it if I find a cardiologist who is knowledgeable and current with the rapid increase of research and improved diagnosis and treatment for HCM. Frustrating, right? And everyone, isn't it amazing that even though the rate of HCM is 1:500, that the public and even many "cardiologists" and "especially primary care physicians" do not know research and practice for HCM??? Seriously?? I'm only a retired school teacher and even I can read and comprehend the research!

It makes my heart sad that uninformed medical providers sometimes seem teritorial ( in my experience) and do not automatically refer people w HC to a center of excellence. Most research indicates many people have mild or seemingly no symptoms so maybe health providers minimize this disease. I think my Dr. viewed me as a bit hopeless and never once went over options other than recommending a difibulator. I referred myself to Mayo. I am so sorry about what you have been through. I have learned to always get all of my records and review them. I was severely anemic but my cardiologist didn't mention this ( it was all in blood work he ordered). Anemia adds to heart symptoms - dizziness, heart palpitations, breathlessness. I could not get out of my car without almost passing out, I could not walk without a cart, wall, or furniture to hold on to. I was severely out of breath just standing up. I could not bend over. I get upset thinking of the months I suffered, my heart suffered, w the extra burden of the anemia as if the HC was not enough. Maybe we can help inform local providers as we advocate for and get the help we need. Good luck to you.

I wonder if Bristol Myers Squibb could change their ads to include a list of symptoms that I and many others (although they may vary individually) have had for years. Once I was diagnosed and saw the commercials, I was like "yes...that's me!" However, if I had viewed a list containing difficulty walking up steps and inclines; difficulty walking anywhere in heat/humidity and always after eating; problems bending over & feeling light-headed; palpitations and had been diagnosed previously with a heart murmur that was worsening, I likely would have taken the initiative to get proper treatment sooner. The cardiologist who reviewed my routine ECHO overlooked all the moderate to severe findings and recommended a follow-up in a year. Fortunately, based on those findings, I referred myself to a cardiologist (unknowingly at a COE) who recognized the symptoms immediately and arranged a visit with the HCM specialist.

Yep been misdiagnosed for years! Local hospital said i had early signs of cardio vascular disease put me on carvedelol, it wasnt till i had two back to back heart failures a month from each other the first being misdiagnosed as pneumonia
The cardiologist said i had LVOTO and that the hospital visit a month earlier had nothing to do with my heart!
Thankfully the attending doctor stayed back with me after the cardiologist left and let me know she disagreed with his diagonais.
I went to the mayo and was diagnosed HCM with severe LVOTO 122mmHg gradient stressed.
After 3 weeks of camzyos gradient 31mmHg
Surgery is being planned due to the 430 mile one way to go to mayo

Yep had all those symptoms
Got to a point no running,
Bicycling was getting less, iut hubting in the hills was difficult!
Dr kept telling me i may have exercise induced astma, something in the air, mybe my age was catching up to my always some sort of poor diagnosis!
Im 57 been on camzyos for 6 weeks and feel like i got my life back!
Walking hills, riding 14 miles on my mountain bike,
For the month of Jan i logged so far 121 miles on my bike!
I havent logged 100 miles in a month in 2 years

I was told I had asthma and panic attacks.