Dancing with Afib
It’s been on my to-do list for some time to start this essay newsletter/blog.
This is where I will share my personal essays and stories. I may occasionally talk about my business. They often overlap.
My decision to name this newsletter/blog Cadence is rooted in the meaning of the word. To me, it represents cycles of healing and growth, and two things I love… the rhythm of bicycling and music!
A cadence is a rhythm, or a flow of words or music, in a sequence that is regular (or steady as it were)
I want to hear your stories too. Please share in the comments. Let’s build a community.
Ok I am going to dive right in. Since there may be people here that don’t know me yet… this first story is about my health journey and dance with atrial fibrillation or afib.
How it started
I was first diagnosed with afib in May 2019, a few days after my 55th birthday. It hit hard. It was scary. I felt like I had lost control of my body and that it had abandoned me.
If you do not know about afib, here is a description from stopafib.org, a wonderful resource for all things related to afib:
Atrial fibrillation, often referred to as “afib”, is an irregular heartbeat, a rapid heartbeat, or a quivering of the upper chambers of the heart, called the atria. Atrial fibrillation is due to a malfunction in the heart’s electrical system, and is the most common heart irregularity, or cardiac arrhythmia.
After several unsuccessful procedures to get my heart back in rhythm, I persisted and found a wonderful doctor that was able to figure out my non-typical case of afib. He returned my heart to a normal rhythm, and other than a few instances, it’s stayed that way for over two years.
New Doctors and Getting Off Meds
Last year during my annual check-up, my new primary doctor wisely said you are a middle-aged woman with a heart condition. Having your cardiologist and electrophysiologist an hour away is not practical. You need local heart doctors. She recommended a local electrophysiologist that has taken me on the next leg of this journey. Within 15 minutes of meeting, we formulated a plan to ‘get me off meds.’
This plan is a phased approach that included two procedures; one to implant a Watchman device which keeps blood clots from forming and minimizes the risk of stroke. This allowed me to stop taking the blood thinner Eliquis. The second procedure was to implant a loop recorder, a heart monitor that sends reports 24/7 to my doctor. This will allow me to stop taking medication that lowers my heart rate safely. Both procedures were successfully done, and the ‘get off meds’ plan is well underway.
The Plan is Working
The picture below shows the four pills I take every day.
The pink pill is a lower-dose interim blood thinner that was prescribed during the healing process of the first procedure. I will stop taking it in a few months.
The white oval pill is the one that lowers my heart rate. My dosage was reduced to ½ dose for 30 days, and if all goes well, I can stop taking it altogether since my heart is being monitored 24/7.
The small white pill is for high blood pressure, which will also stop soon.
The round yellowish pill is an 81mg aspirin that will be the only medication I will need to continue taking daily.
This is progress. This a big win in my dance-off with afib.
Afib Disrupts Your Life
Now there are two things about afib that people don't really talk about:
there is no cure; it can come back at any time, and
afib disrupts the rhythm of your life.
These two things have invited me to learn big lessons over the past few years that have taught me to make changes in my life and business and to learn a whole new level of patience.
These changes have all been positive and were needed. But as I started to see my situation more clearly, I saw that I had stepped aside and allowed fear and the unsteadiness of living with afib and the potential side effects of the medications to make decisions on my behalf. I was living with 1/2 of my heart. I was not OK with this realization and resolved to reclaim the management of my life, my body, and my diagnosis.
Taking Positive Action
As with any change, decisions need to be made and put into positive action.
This is what I’ve done so far…
The first action was really looking at my life and my business and being realistic about my level of energy, and being honest about what I could and could not sustainably do. I knew I could no longer work the long hours and carry the stress of the model of my business. I changed that.
The next action was finding the local doctor and working towards getting off meds. Check.
And now, it’s time to do what I do and use my story to help others.
On the Road to Sustainable Rhythm
Early on, I realized that most doctors minimize the impact of afib. In my quest to learn everything I could, I found a wonderful organization stopafib.org. This website contains a wealth of information that’s easy to navigate and understand.
They not only share current relevant information from doctors, researchers, pharmaceutical companies, and other patients… they get shit done and are actively working to build awareness and make changes in the treatment and hopefully a cure for a disease that affects millions of people.
I am deeply moved to share that I have been included in stopafib.org’s first patient advocate training program. I have no idea yet what this all means, but I do know that I have gone through this for a reason and that my unique mix of life and business skills and experiences can help in many ways.
When I selected my word of the year - what came to my mind was rhythm. Then I thought about it and came to ‘sustainable rhythm.’ The goal is to get into rhythm and STAY in rhythm.
This is the next path on my journey.
Will you join me for the ride?
Share your story or comment below, and I hope you will stick around for more stories.
Donna Cravotta
While I don't have a diagnosis of afib, I did recently receive a diagnosis of colon cancer. Like you, it was important for me to understand this condition and how I could manage the situation. I found an organization, CaringBridge.org where I published my healthcare journey. I made it clear to my family and friends that I didn't want "so sorry" responses. Instead, I needed positive energy and vibes. I chose to have surgery to remove the tumor and, thus far, have rejected chemo, which is the usual protocol in such circumstances. Instead, I focused on my mindset and did a lot of energy work. At my last checkup, I did so well that I don't need another test period for 6 months. I'm grateful. Keep up the healing, Donna. to your good health!