My real story living with hypertrophic cardiomyopathy and AFib, symptoms I ignored and life after open heart surgery.
Welcome Friends! For years this blog has been a place about home. Creativity, comfort, small projects, recipes, and ways to make everyday life feel a little warmer and cozier. But behind all of that there has always been another story quietly happening at the same time.
I live with Obstructive Hypertrophic Cardiomyopathy, a genetic heart disease, along with atrial fibrillation. Because it is Heart Month, it finally feels like the right time to talk about it openly. Not for sympathy, but because I know how frightening and confusing it is to hear those words for the first time, no matter what your diagnosis is. If sharing helps even one person recognize symptoms sooner than I did, then it matters.
I had warning signs for a long time and ignored them. I always had an explanation. I acted like I knew better. Shortness of breath, racing heart, pressure, exhaustion. I told myself I was busy. The kids, caring for my mother, work, the dogs, life. I would even take an aspirin and keep going because there were things that needed to be done. If any of this sounds familiar, please pause and listen to your body.
Hypertrophic Cardiomyopathy is also known for causing sudden cardiac events, even in young healthy people. You have probably seen stories of athletes collapsing during games. Many times HCM is the reason.
One night I could not ignore it anymore. Pain began running down my left side and I knew something was really wrong. We went to the emergency room and my husband and I watched the monitors react wildly while doctors came in and out saying they were unsure what they were seeing. Finally Dr. John Cosmi studied the readings and understood immediately what was happening. He stabilized me and later we learned the full diagnosis. Obstructive Hypertrophic Cardiomyopathy. My thickened heart muscle had crushed my mitral valve and it was no longer working properly.
Open heart surgery was necessary, but my body was in such bad shape I needed months to prepare for it. I could not have prevented the disease since it is hereditary, but I could have made things far easier if I had listened to the signs my body was giving me and sought help earlier.
Three months later I had the surgery of my life. I trusted my doctors and felt ready. Part of the heart muscle was shaved down and a mechanical mitral valve replaced my destroyed valve. Within about a month I felt relief I did not realize I had been missing. The pressure was gone and my heart could function again. Not cured, but dramatically better. Recovery brought a new normal. Lifelong blood thinners, constant awareness, and learning how to care for my heart instead of pushing through everything.
That is why I want to say this clearly. Please do not ignore symptoms. Unusual exhaustion, shortness of breath, jaw pain, fainting, palpitations. Talk to your doctor. Chest pain means go to the emergency room. Never take a chance. It may be nothing, but your heart is not something to gamble with. We are all busy and we all put everyone else first. I did too. But your body keeps the score whether you slow down or not. All of these symptoms can also mean other heart problems… so PLEASE check them out!
One of the most important things I have learned is that hydration truly matters. Always have water with you. Not later, now. It helps the heart work easier and has even lessened some of my AFib episodes. It is not a cure, but it makes a real difference. Water or seltzer is perfect. Caffeine does not count and can actually dehydrate you.
Try to pause during the day. Sit for a moment. Breathe deeply. Sip herbal tea. Learn how to notice what your body is telling you. Even small habits can support your heart.
There is a lot more of this story to share and I will take my time telling it. My hope is simple. That someone reading feels a little less alone and pays attention to a symptom they might have dismissed yesterday. If you have questions or need support, you can always reach out to me. You are not alone.
Heart Condition Resource Center
If you or someone you love has been diagnosed with Hypertrophic Cardiomyopathy, atrial fibrillation, or unexplained heart symptoms, these organizations offer reliable information, support, and guidance. I am not a medical professional, just someone living with this condition, so these trusted sources are wonderful places to learn more and find help.
Hypertrophic Cardiomyopathy Association
An incredible organization dedicated specifically to HCM patients and families. Education, physician directory, and patient support.
American Heart Association
Clear explanations of heart conditions, symptoms, treatments, and heart healthy living.
National Institutes of Health Genetic and Rare Diseases Information Center
Helpful for understanding inherited conditions like Hypertrophic Cardiomyopathy.
Mayo Clinic Patient Care and Health Information
Easy to understand medical overviews, treatment options, and what to expect after diagnosis or surgery.
Johns Hopkins Medicine Cardiomyopathy Center
Educational material about cardiomyopathy and current treatment approaches.
StopAfib.org
Excellent patient education about atrial fibrillation symptoms, triggers, medications, and daily management.
WomenHeart: The National Coalition for Women with Heart Disease
Community support and education, especially helpful for women navigating diagnosis and recovery.
CardioSmart American College of Cardiology Patient Hub
Straightforward explanations about heart tests, medications, and lifestyle changes.
A Small Reminder
Online information is helpful, but nothing replaces your own doctor who understands your specific health history. If symptoms feel new, worsening, or frightening, please seek medical care right away.
In Part Two I will share what daily life with HCM and AFib actually looks like, the routines, adjustments, and small habits that help me live normally with a heart condition.
| Want to stay in the know? I’d really love that! (((HUGS))) |
| Like … on Facebook | Follow … on Pinterest | Follow … on Instagram | |
 |
Amazing story and this will help people. I’m going to share my MS journey.
You’re an inspiration.
Hi there my friend and thank you for your kind words. I have wanted to write something for years and now seemed to be the right time. With all that is wrong in the world if a simple story has the chance of helping one person that would be a good thing.I also want people not to ignore symptoms and make excuses… they add up and that is not a good thing. You should share your story! Sending hugs and love your way and we will alk soon!
Good for you sharing this! You will have saved lives by putting your story out there!
Thank you for your kind words EJ. I appreciate them. It took me long enough to do it because i never knew if I should or not! The message I really wanted to get out there is LISTEN to your body and don’t ignore it. Also if you have chest pains… go to the ER… better safe than sorry. We just tend not to make time for important things… I learned the hard way and want others not to. Sending you tons of hugs and wishes for a wonderful week!!!
Thank you for sharing your story. For women, we absolutely power through the day and make excuses for any pain. This is such a strong reminder to be alert, pay attention and seek help.
Hi there Lorena! How are you. Thank you so much for sharing. You certainly understood the message I wanted ti send. We don’t pay attention and as far as excuses… we have a million of them! Like I said… if this little note makes one person help themselves … that is what is important! Sending hugs to you and thank you for dropping by and I hope you have a happy and healthy week!