A Heart Journey That Gives Hope
I choose not to define myself by my heart condition, but as a woman with heart disease and a heart survivor
A milestone anniversary is a time to remember happy and unhappy events. And, sometimes, it can be a blend of both. In August 2022, I celebrated the milestone anniversary of my 10th year after experiencing a total heart block, also known as a heart block 3, the most life-threatening kind of arrhythmia and very rare for a person at age 63.
My Heart Event
On August 26, 2012, I fainted in my bathroom and was saved by my husband's quick, lifesaving action when he performed CPR. I remember nothing about that day, nor anything, until two days after my ICU stay.
To survive a heart block 3 is a miraculous thing.
Then, still in the hospital, I wrote on a piece of paper, asking my husband, "what happened?" And I remember the unforgettable image of a team of five doctors at the foot of my bed to see firsthand the miracle that I was alive and well! To survive a heart block 3 is a miraculous thing.
I had received a pacemaker and began my journey to recovery, and the goal was to feel as "normal" as possible, to feel "like myself" again. Just two months after receiving my pacemaker, I felt well enough to take a trip to New York City with my husband.
Five years later, in 2017, the results of an echocardiogram (Echo) showed my EF (Ejection Factor) had gone down, and a PET scan revealed I had cardiac sarcoidosis in my heart at a very high level.
Sarcoidosis is a condition I had never heard of before. It is a rare inflammatory disease that can impact many body systems, including the heart. Cardiac sarcoidosis is diagnosed in 2-5% of sarcoidosis patients. My cardiologist told me that sarcoidosis of the heart often first "presents" as a heart block.
Receiving counseling to understand the impact of living with a traumatic heart event and being an ICU patient was a key to my total recovery.
In 2019, needing my pacemaker replacement, I received an ICD (implantable cardio converter defibrillator) because of my sarcoidosis and risk of arrhythmias. Regrettably, I had complications after my surgery, making an ICU stay necessary. This was a difficult time for me, as the pandemic began not long after that.
Although I am immunocompromised due to my medication for sarcoidosis, I am doing well overall. However, the past three years have been incredibly challenging due to the pandemic, as my health situation makes me a high risk person.
I recently began cardiac rehab in a local hospital to help improve my heart function and conditioning. And I am fortunate to take medications considered the "gold standard" for treating my heart.
Recovery is Holistic
Recovery from a life-changing health event involves the total body. Therefore, it is more than taking one's medications or physical rehab. An essential part of my recovery was realizing that I needed help to make sense of it all, and to process my experiences.
This was especially needed because I remembered nothing of my 2012 heart event and continuously asked for details from my husband. Then, in 2019, following my ICU stay after surgery, I experienced post-ICU PTSD, which was very upsetting.
Receiving counseling to understand the impact of living with a traumatic heart event and being an ICU patient was a key to my total recovery. Now, after ten years of living with a severe heart condition, I want to share several insights I feel are paramount based on what I learned during my heart health journey.
Heart disease, especially for women, must become a priority for the public and health care overall. In addition, women must be educated and act on new or unusual physical symptoms because they can signal potential heart problems.
Remember that living with a chronic condition is a journey.
I had warning signs before my heart block in 2012. When I walked outdoors, I experienced tightness in the center of my chest and some breathlessness. It wasn't painful, but it was new and different. And later, I experienced bouts of nausea and back pain, which were also new and different.
We all need to learn how to perform CPR and operate an AED (automated external difibrillator). Because my husband remembered his CPR training, he was able to save my life. Assemble the best health care team you can. Reach out to others for information and support, be educated about your health condition, ask questions, and don't be afraid to get second opinions.
Remember that living with a chronic condition is a journey. Recovery involves being patient and learning to take care of your whole self, taking meds, eating nutritious, heart-healthy foods, exercising, finding healthy ways to cope with stress, including supportive friendships, and having fun.
Moreover, a health journey often involves setbacks. Because my heart issues are complicated, I experienced three challenging setbacks in the past four years. First, I had to be patient while doctors figured out the cause of my symptoms. What helped was having the plan to move forward and fortunately I did.
Heart disease or any chronic disease doesn't have to do with intelligence. I was a stress management teacher who needed to do more to practice what I taught. We need to listen to our bodies and not let fear stand in the way of calling to get advice about any new or different symptoms we may experience. "If in doubt, check it out!" is a good motto.
I choose not to define myself by my heart disease condition. Instead, I think of myself as a woman with heart disease and a heart survivor.
Sharing Your Health Story
If you have been, or are a patient, consider sharing your story with others. On the first anniversary of my heart event, I felt ready to share my experience and became a hospital volunteer with a PFAC (Patient and Family Advisory Council).
As a woman who has heart disease and is a heart survivor, I continue to have hope.
I told my story to new hospital employees to let them know how the experience of receiving positive, patient-centered care helped my recovery in lasting ways.
A Downside Can Have an Upside
And, yes, amid a health journey setback, you can also experience surprising happiness. In 2017, after receiving my sarcoidosis diagnosis, I was put on a high dose of prednisone to decrease my heart inflammation. Surprisingly, I experienced a surge of energy and soon was cleaning and organizing with a vengeance.
Lo and behold, I found some cards sent to me by a childhood friend, mailed from the Netherlands after she and her family left the U.S. I was so touched by what this friend, who was 7 years old, wrote that I felt moved to try and find her.
After five years and a fantastic search by another Dutch friend (we met through her mindfulness Zoom class), I found my friend in November 2022 after not seeing her for 65 years! Happily, we are in touch frequently, and I look forward to meeting her in person.
My Message of Hope
As a woman who has heart disease and is a heart survivor, I continue to have hope. And so much gratitude and love to all who have walked with me during my heart journey: family, friends and health care workers. But No. 1 is my beloved husband, who has always been by my side and made all of this possible.
I fervently hope that my heart journey holds meaning for you.
Debbie's lifelong hobby is singing, and she also enjoys being in nature, decorating, and staying in touch with friends and family. Read More