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.

I want to emphasize how important it is to advocate for one self with cardiac issues. I am 71 years old female and have dealt with high blood pressure since I was 50. I live on a farm in southern Indiana, ride horses, garden, hike and generally live an active lifestyle. When I was 65 I started to have cardiac symptoms of shortness of breath, dizziness, lack of stamina and passed out once. My cardiologist diagnosed me with Obstructive Hypertrophic Cardiomyopathy after a Echocardiogram which presented itself as a growth on my septum wall in my left ventricle just below my Aortic valve which involved my Mitral Valve as well. I live in a small town and my local cardiologist told me to not worry about it, just go about my life and try to keep my BP down to a reasonable level with medications. After a number of years being told that and that I did not need to go to a OHCM specialist, I decided to go to Mayo in spring 2019 on my own initiative. My local cardiologist did not think that was necessary. At my first visit at Mayo I was told that things looked stable, continue with medications and lifestyle modifications, and come back in 5 years for a check up. In the fall of 2019, I decided to go to Cleveland Clinic to see a specialist there because it was so much closer than Mayo. I was referred there by a friend who works there and saw his colleague who is an experienced heart failure cardiologist. I was then told there was a significant issue with the obstruction, it looked stable and come back in 6 months or as needed. Well, things started to go belly up about a month later where I felt dramatically worst and my cardiac functions were dramatically effected. I pretty much could not do anything. After consulting with my CC doctor I went there in Feb 2020, I was told that I things progressed to a dangerous place and I needed a septal myectomy asap. On Feb 26, 2020 I had open heart surgery at CC. Part of my story is I returned to Indiana on March 9, 2020 and the world immediately shut down due to Covid. I was not able to get the proper follow care, cardiac rehab was closed, and I had to do my follow care with CC via tele health. If finally made it back to CC in March 2021 for the visit I was supposed to have in April 2020. I did see a local cardiologist when I returned but the docs at home were not experienced in follow up care to what I had done. I am now having issues with complete left bundle block and will see a local doc who specializes in electrical issues. The point of my story is that one must advocate for themselves, follow their heart and do what is best for yourself. It is important to see a specialist and get a second opinion when you are not getting the answers you need. If I had not taken the initiative I did, went to CC when I did and have the most experienced cardiologist and surgeon help me out, I may not have gotten the care I needed. Take care of yourselves, ask questions, and get the best care you can even if it means traveling out of town. I learned that things can change quickly in regards to cardiac issues. Best of luck to everyone out there with cardiac issues and a wonderful thanks to the wonderful doctors, nurses and staff who work so hard to help us out.

I want to emphasize how important it is to advocate for one self with cardiac issues. I am 71 years old female and have dealt with high blood pressure since I was 50. I live on a farm in southern Indiana, ride horses, garden, hike and generally live an active lifestyle. When I was 65 I started to have cardiac symptoms of shortness of breath, dizziness, lack of stamina and passed out once. My cardiologist diagnosed me with Obstructive Hypertrophic Cardiomyopathy after a Echocardiogram which presented itself as a growth on my septum wall in my left ventricle just below my Aortic valve which involved my Mitral Valve as well. I live in a small town and my local cardiologist told me to not worry about it, just go about my life and try to keep my BP down to a reasonable level with medications. After a number of years being told that and that I did not need to go to a OHCM specialist, I decided to go to Mayo in spring 2019 on my own initiative. My local cardiologist did not think that was necessary. At my first visit at Mayo I was told that things looked stable, continue with medications and lifestyle modifications, and come back in 5 years for a check up. In the fall of 2019, I decided to go to Cleveland Clinic to see a specialist there because it was so much closer than Mayo. I was referred there by a friend who works there and saw his colleague who is an experienced heart failure cardiologist. I was then told there was a significant issue with the obstruction, it looked stable and come back in 6 months or as needed. Well, things started to go belly up about a month later where I felt dramatically worst and my cardiac functions were dramatically effected. I pretty much could not do anything. After consulting with my CC doctor I went there in Feb 2020, I was told that I things progressed to a dangerous place and I needed a septal myectomy asap. On Feb 26, 2020 I had open heart surgery at CC. Part of my story is I returned to Indiana on March 9, 2020 and the world immediately shut down due to Covid. I was not able to get the proper follow care, cardiac rehab was closed, and I had to do my follow care with CC via tele health. If finally made it back to CC in March 2021 for the visit I was supposed to have in April 2020. I did see a local cardiologist when I returned but the docs at home were not experienced in follow up care to what I had done. I am now having issues with complete left bundle block and will see a local doc who specializes in electrical issues. The point of my story is that one must advocate for themselves, follow their heart and do what is best for yourself. It is important to see a specialist and get a second opinion when you are not getting the answers you need. If I had not taken the initiative I did, went to CC when I did and have the most experienced cardiologist and surgeon help me out, I may not have gotten the care I needed. Take care of yourselves, ask questions, and get the best care you can even if it means traveling out of town. I learned that things can change quickly in regards to cardiac issues. Best of luck to everyone out there with cardiac issues and a wonderful thanks to the wonderful doctors, nurses and staff who work so hard to help us out.

@bbonchek

You make such a good point regarding the value of advocating for yourself and trusting your instincts when things don't seem right. Getting a second and/or third opinion can be the most important thing you do for yourself.

When will you be seeing the doctor regarding the left bundle branch problem?

At this time it does not seem like the LBBB is an issue. We are keeping an eye on it though.
I am now seeing a top HF specialist closer to home who has helped me to become very stable with a combination of the right meds and exercise. I just finished a 3 month Cardiac Rehab program to assess my ability to safely exercise. This has given me the confidence to move on with my life. Best of luck to all who are dealing with cardiac issues. It is important to be diligent and thoughtful in your journey.