Women and Heart Health: Have you got a story to share?

I'll never forget the phone call. May, 2019. 8:30 PM. My mom's (and mine) cardiologist was calling me. She had been in the hospital for weeks. I was under a lot of stress having to work and take care of my demented father. But he was not calling about my mom. He was calling to talk to me. Let me back track a bit. Since my mid-twenties I had been diagnosed with a "heart murmur." Not a big deal. Take a pre-med before teeth cleaning. That was about all. But I had noticed over the past couple of years I was becoming short of breath on hikes. I had been hiking with a girlfriend for years. Mt. Lassen, Mt. Shasta, Whiskeytown, the Redwoods. I also had been taking Ballroom/Swing lessons for ten years and on a couple of occasions, I felt like I may pass out and not make it back to the table after a 3 or 4 minute dance. Not like me at all. My symptoms had become harder to ignore and I was barely able to finish my daily 6-mile walk. I was stopping up to twenty times some days. There was something definitely wrong. After three or four years of annual cardiology check ups and echocardiograms, all I was told was my murmur was louder, and I may have aortic stenosis. Let me air some dirty laundry...Despite my healthy eating, healthy lifestyle, I was a smoker. Yep. 42 years of dedicated smoking. Not a pack a day smoker. A light five or so a day smoker. I planned to quit before I turned 60. And I did in 2018. I was worried my smoking may have caused these terrible symptoms. The week before this life-changing phone call, I had really struggled and had an appointment with my FP. He listened to my heart and declared my murmur was a grade 5/6, I had something seriously wrong and I needed to be seen by the cardiologist. I didn't have time I explained. My mom is in the hospital. My dad. My work. At his strong insistence and intervening, I saw the cardiologist that week. A week later the cardiologist called me, and I assumed it was regarding my mom. Nope. Instead he told me he had reviewed my echo and I had something really, really wrong. Something so wrong I needed surgery. Open heart surgery. I was dumbfounded. I was shocked. I thought I heard incorrectly. He told me he thought I had a Sub-aortic membrane. It's not common. It's difficult to diagnose. But he could refer me to our local cardiac surgeon for open heart surgery. Simple as that.

I did not have time for this right now. My mom continued to get worse, and after seven weeks of being in the hospital she ended up on Hospice. I had to find an assisted living that would take them both, and provide Hospice too. I had to move them from their apartment. My dad was having a terrible time dealing with all this. My folks had been married for 69 years and I could not separate them at the end. My mom died 8 days later. I had legal issues and so much to take care of, that taking care of myself was a joke. I did a little research about my newly discovered rare diagnosis. I did not feel comfortable with my local options and asked to be referred to two top places. Cedars-Sinai and the Mayo Clinic. After my mom's memorial service we went to Cedars-Sinai in August and the Mayo in November.

I was surprised to discover that I did not have this rare disorder, but instead had different uncommon disorder, Hypertrophic Obstructive Cardiomyopathy, HOCM. I was born with it. Relief on my part that my years of smoking had not caused this. Ok. Time for more disclosure here. HOCM is hereditary. I got it from someone. But I am adopted so clueless to know from whom I got this. I had never been pregnant, therefore I had no children I could pass it on to. I was told pregnancy could be very dangerous, maybe deadly to the mother. Dodged a bullet there! When you have been told most of your life you have just a garden variety murmur, but you learn later it's far more sinister...It can definitely make you ponder the "what ifs." I felt confident the moment we stepped into the Ghonda Building in Rochester, Minnesota, that I was on the right path and in the right place. As enamored as I was with the Mayo Clinic, it did not prepare me for an unscheduled, impromptu meeting with a cardiac surgeon. He confirmed, yes, I did have HOCM and yes I did need open heart surgery. A septal myectomy he called it. Pretty rare. Very few places perform them. You need a center of excellence for success. Wow. So much information in such a short time! I was not prepared for this news. I took a month to contemplate all this. I did research online. I prayed.

A septal myectomy was scheduled for March 16, 2020. If this day sounds familiar, it may be because it is the day the world shut down because of Covid. I was packed and we were leaving literally in eight hours...but we had to postpone. I was re-scheduled for July 8, 2020. In April my dad was put on Hospice. He died three days after I got home from Rochester. At least he waited for me to come home.

So, if there are any take-aways from my little story, it would be listen to your body. Trust your instincts. Listen to your doctor but do your own research. Don't put off taking care of your own issues over others issues if possible. If you have something uncommon, with symptoms that could be any number of things, you are likely to fall through the cracks in smaller, rural areas. If it were not for my Family Practitioner, insisting I had something horribly wrong, I would have waited another year to see the cardiologist. I do not fault him for misdiagnosing me. It's such an uncommon disease. But he did not really investigate anything outside his wheelhouse until my FP called him and got involved. He sees a lot of Coronary Heart disease in his practice. I didn't fit the profile. Heart disease snuck up on me and I had no idea it was lurking inside my heart my whole life. I was healthy and active before this, and I am healthy and active once again. It has been quite a journey, one I did not know I was going to go on...but I am grateful to the Mayo Clinic, my family doctor, God and my significant other. I really didn't need to make any life-style changes, I just needed to accept and move forward. Thank you for the opportunity to share my little heart story.

@lioness - I’m interested in what you said about cutting down on your calcium- does that mean your calcium supplements or calcium rich foods?

@astaingegerdm The supplement Calcium is hard on the arteries ,a report was on the news then I went to my cardiologist and she said one of my arteries was blocked ,it's been fine and open till I started on calcium supplement.I see her in March so am going to talk to her about this .A long time ago my Dr. Told me was my calcium level was good and not to go on a supplement I haven't till osteoporosis started

Hello @karukgirl

Yours was not just a "little heart story", but a remarkable story! You must feel much better since your surgery. Have you been able to resume most of your activities now?

@lioness - That was an eye opener. I used to take supplements regularly some years ago but stopped when I got GI problems. I used to have osteopenia, but last one normal. I also have some calcification in th left anterior coronary artery.

Thank you for your remarks. Yes..."little story" was probably the wrong choice of words...for as you probably noted, I used A LOT of words 🙂 To answer you: Yes. I can do everything I did before HOCM. I am still working with Dr. Ammen to regulate the calcium channel blocker I take. I'd like to get rid of it entirely, but I still get HCM symptoms at times. Tachycardia for instance. It's been a year and a half since surgery...I feel much better now. I was sure I would live long to be honest or survive surgery. But here I am! Thanks to God and good care.

That is so great, @karukgirl! You said you would like to stop the channel blocker, what symptom does the channel blocker control? Heart rate?

Yes, I do have a cardiac success story to share thanks to Mayo Clinic in Phoenix. I was diagnosed with idiopathic heart failure (dilated cardiomyopathy) with reduced HF of 25% in left ventricle in March of 2020. Due to my low blood pressure cardiologists in Oregon were reluctant to give me anything more than "baby doses" of Coreg and Losartan. For over 2 years I asked to be placed on something more effective since the medications stabilized my conditions but did not touch my Ejection Fraction numbers. After researching heart failure at Mayo Clinic online I decided to make an appointment. I was immediately told that if I can tolerate Losartan, it was likely that I could tolerate Entresto. That was in August of 2021. I was started on low doses of Entresto, then that was increased (doubled) and taken off Losartan. In January of 2022, an echocardiogram showed that my ejection fraction was now 39%--a significant change. I am now on the full dose of Entresto, and Coreg has been doubled too. I was told that I was a cardiac success story. Along with exercises daily, a plant-based diet and stress reduction, I am doing great!

Mayo Clinic News Network published this article and video:
- 3 things to know about women’s heart health https://newsnetwork.mayoclinic.org/discussion/3-things-to-know-about-womens-heart-health/

What symptoms did you experience?

My symptoms have always been pain in my upper back and suffering fatigue for weeks pre-heart attack. With my first heart attack, I had been treating at a Spine Clinic for my neck, which was problematic. After the heart attack, my cardiologist thought many of my symptoms probably came from my heart. Specialists may not look beyond their specialty. With my recent experience, they knew my stents were blocked. I had been to the E .R. Twice with tachycardia and felt fatigue and feeling blah for a couple months. I was told they would treat with meds and I should do cardiac rehab. I think I was a heart attack waiting to happen. Not happy with the state of health care. Also, realize I wasn’t able to connect the dots and advocate for myself.