What does heart failure mean with HOCM

I am sorry to read of your experience. My HOCM was progressive and after a syncope in 2/22, I had a septal myectomy in 7/22. I also have an ICD installed a few months later, the result is a very normal active life as long as I am mindful. What does your cardiologist say? Perhaps a referral/call to Mayo in Rochester for an evaluation would be a good next step. Your cardiologist could send all tests and data as mine did, I did not go there till a couple of days before my surgery.

So I can make an evaluation appt with a doctor at Mayo on my own? I didn’t know if I needed to be referred. My cardiologist has no experience with hocm as I’m in a small town in East Tennessee. He just more or less goes on what I tell him but I don’t know what he should be testing for and looking for as far as hf goes. I appreciate the feedback.

@joannoxenham
What is your EF? Heart failure means heart is not pumping out blood as good as it should and is below the normal levels.

My ef 70% last year. Is that the determining factor of hf or there are other tests?

@joannoxenham

60-70 is the normal range for EF. You are at the top level. To explain some when the heart fills with blood the left ventricle pumps blood to body. When you get below the 60% STATISTICALLY you are starting to have heart failure.

However it is just a number and does not reflect how the body is compensating or the status of your cardiovascular system, nor what has or is causing it. I had a catherization that did not find any cardiovascular disease. I had had a recent really bad virus prior to stress test that found a LBB and heart failure. So they diagnosed me with cardiomyopathy virus caused.

I hate and many cardiologist as Mayo Clinic agree heart failure is a terrible word to use for the reduction in blood flow from heart. It should be reduced heart function and call it RHF. Heart failure sounds like to patient their heart has failed and it has not. If it failed we would not be writing on MCC.

The right side of heart is the one that pumps blood to lungs and very important also. In my case my RV is normal and my LV is at 25%. Sounds bad I know but I do Sprint Triathlons and have no exercise restrictions. I do have a ICD/pacemaker since 2006 because at that time my EF was below 30%. As you can see has stayed about the same for almost 20 years. I contribute that to new medications I was put on and my ICD/pacemaker. I also am an avid exerciser.

There are many test to determine heart failure and you should discuss with your cardiologists and or heart failure specialist. If you don't have specialists in your area I would suggest traveling to see one for a second opinion and answer your questions. I am not familiar with some of the terms you use so always on MCC we are not medical experts just passing on information we have been told and each of us are individuals.

Second opinions is how I got to Mayo Clinic in Jacksonville. I had been seeing a cardiologist where I lived but wanted a seconde opinion. It was (I now live 30 minutes away) a 3 hour drive but well worth it as after got second opinion I asked them to be my primary care. They then scheduled the pacemaker/ICD and put me on new medications.

Thank you for sharing your info. Yes we are all individual cases with varying stats. My exercise induced ef was 60-65 and the septum is 2.1 cm which is severe hypertrophy. I know that affects the heart pumping as well. The 200 mg of metoprolol I take really slows the heart down but the icd keeps it pacing at 60 bpm.

I will look into second opinions and see if I can get to a hocm specialist. Thanks again

It never hurts to call and ask about making your own appointment, you may even be able to contact them online "Contact Us" on the website. It would not hurt for your cardiologist to call them directly, I would think they would be extra willing to talk to another cardiologist and come up with a plan of action designed for you. Here is how it worked for me, others may have different stories: My cardiologist sent all of my test results to Mayo (EKG, echo, bloodwork....), for evaluation. I did not have to actually go there until a couple of days before surgery (that was the plan of action set up for me), and I did not have to return for any follow-ups, all was taken care of at home.

Hi there @joannoxenham, let me officially welcome you to Mayo Connect.
I posted an article from Mayo Clinic that you may find interesting if you have not read it already. I would 100% encourage you to seek a second opinion and find an expert in HOCM. I had severe HOCM as well and had two additional opinions outside of my small town cardiologist. He had misdiagnosed me with four or five different things until I finally got to Cedars-Saini. I next went to Mayo Rochester and was further diagnosed with severe HOCM and told I needed a septal myectomy. I think all the blood drained from my head, my hearing shut down and I'm sure my poor HOCM heart skipped more than it's normal beats.
Only you get to decide what direction to go, but you owe it to yourself to at least learn from an expert what your options are. I can say with confidence...nobody wants open heart surgery!
But I can also say with confidence if your HOCM is severe, it's not going to get better and the thought of facing a life-time (and I didn't know how long I had to live) of not being able to hardly walk, tie my shoes, eat a meal without feeling like I was going to die...that helped me make my decision.
Plus, being at the Mayo Clinic, where the finest HCM/HOCM doctors practice was truly comforting.
Here is a link to self refer: https://mayocl.in.1mtmR63
I asked my local cardiologist to refer me to the top two heart COE (Center of Excellence). I live on the other side of the Country in far Northern California. Do not let location be a reason to not at least try to be seen at a COE. In my opinion, and I do believe the world's as well, Mayo Clinic is THE top hospital for HCM and septal myectomy. Not every person is going to be successful on Camzyos, as you experienced. Not every person wants to keep taking higher doses of heart meds.
Can you ask your doctor to refer you to Mayo Rochester?

Debra, you wrote an extremely informative easy-to-read explanation and as we have noted in the past, our cases are more alike than different. I hope joannoxenham investigates all of her options. It was my cardiologist's suggestion that he refer me to Mayo when it became very clear that I was at a life threatening point of my HOCM progression. You said: "I think all the blood drained from my head, my hearing shut down and I'm sure my poor HOCM heart skipped more than it's normal beats." You clearly pointed out that no one wants open heart surgery and location (I live Upstate NY north of Albany), should not be a factor. We both picked the place where they have been doing thousands of these surgeries since 1959. It took courage to see it through - The Mayo Clinic has many beds filled with courageous people. I hope joannoxenham will keep us posted as to what she decides so we can offer her continued encouragement.