Having a Bad Day

Has your cardiologist done a heart MRI with contrast? Have you had open heart surgery for the obstruction? Are you seeing a cardiologist who specializes in HOCM? This is very important. There are not a lot of cardiologists knowledgeable about HOCM options to improve or stabilize your condition.

So sorry to hear what you are going through. I am 84 and went through the same experiences in my late 70s. I went to 4 doctors and was wrongly diagnosed with other heart problems before a doctor finally diagnosed me with HOCUM when I was 80. After that, one doctor told me I was too old for surgery. However, I called Mayo Clinic and was told I was not too old. I had the surgery at Mayo Rochester and now after 4 years, I am doing great. To my surprise, my biggest expense was my air flight and my motel room before and after my surgery. I hope you find a solution and feel better soon.

My cardio comes from a COE and HoCM is one of his specialties. I did have the MRI with contrast but no, no open heart surgery. I see him in 2 months and will drill him till I am satisfied. Thanks for your response.

Welcome to Mayo Clinic Connect @hopenr, I am so glad you found this online community!
Have you had a chance to read some of the HCM stories?
Yours sounds like so many others.
In my experience, HOCM was the weirdest thing ever! I had days where I felt I could run miles, and the next day I could hardly hang laundry on the line I would be so short of breath and my heart would race like crazy. I had the neck tightness too that you mention. Eating a big meal would wipe me out for the rest of the day.
I am not an expert, just a patient who was diagnosed at 62, finally, after being misdiagnosed for several years with all kinds of heart conditions...none of which I had.
I can tell you in my case, heat and high elevations did a number on me. I used to think I may be going a little nuts, because how could I have such highs and lows? I think it is all part of our HOCM/HCM condition.
I'm glad you have an echo coming up. September seems so far out when you feel so lousy, hopefully you have a list of questions you are prepared to ask your doctor. HOCM and HCM can change over time, and if you are feeling worse and worse, maybe you can ask if you can be put on a cancellation list and be seen sooner?
Has your doctor gone over the results of the cardiac MRI with you?

How is the weather (humidity and heat) while you are jogging? I'm a walker and the other day I truly overdid it outdoors and it took a couple of days to feel recovered. Walking/running at the mall or on a treadmill at the gym/home are boring alternatives, so it goes. Have you had a recent stress test?

The cardiac MRI was a while ago. I believe I need a new one.

Yes I had a VO2 Max stress test and I aced it which is why they decided I was not a candidate for Camzyos. It really does change every day. I live in Colorado so no humidity but we are coming off of a heat wave and it knocked me out. Then I get depressed and anxious which does not help.

May I ask you for suggestions of what to ask the cardio?

Hmm...well @hopenr, I guess that depends on your latest echo?
I would certainly want him to know that your symptoms have changed quite a bit lately, and if your newest echo reflects any changes.
I think the questions will come after you know your latest test results.
You mention your doctor is well versed in HOCM, have you had a chest x-ray and labs as well as the standard echo? I ask because in my case, it was not until I got to the Mayo Clinic that any doctor had ever ordered a simple chest x-ray or a simple lab.
They were so telling, and completed the HOCM picture completely.

I have not had a chest X-ray recently. I do get labs done every time I see him. Thanks for the info.