“I’ll take care of myself when life’s less busy.”
That’s how my story starts.
Years of deferring my health with a slow progression of weight gain and countless promises to work on it come Monday.
When there are no Mondays left
The loss of both of my parents within three years of one another set off a series of events that I could no longer ignore.
The weighted blanket of grief made it easy to brush off the general feeling of unwellness and exhaustion that seemed to linger.
Benign symptoms that were soon joined by shortness of breath when I climbed a few stairs or carried something heavy.
My brain rationalized they were signs I needed to stop waiting for Monday to lose weight, clueless that they were red flags of something more sinister.
Terror becomes a wake-up call
One early morning in May 2016, I was jolted awake.
I thought I was having a panic attack.
My heart pounding like it was trying to escape my chest. I could feel my blood pulsating down the left side of my body.
Getting out of bed to “walk it off” made each breath more difficult.
Reluctantly, because who likes to wake anyone else at 2 am, I calmly whispered into my husband’s ear.
“We need to go to the ER. I think I’m having a heart attack.”
Thankfully God was already in the details.
We live 8 minutes from a Level II Trauma Center.
When I arrived at the emergency department everything was a blur.
Oxygen, pokes, beeps, scans, and calming reassurance from the critical care team, “We’re going to take good care of you.”
Thirty-one minutes later, the ER doctor explained it wasn’t a heart attack but a massive pulmonary embolism with right ventricular heart failure.
“It’s a miracle you were able to walk in here.”
terror to testimony
I had a blood clot so large it was corking off the main artery to both of my lungs, preventing blood flow to the rest of my body and organs.
I was admitted to the ICU where an AMAZING vascular surgeon used a newer procedure called EKOS™ Endovascular System to “uncork” my cardiovascular system.
A catheter was threaded through a vein in the side of my neck, to the clot in my pulmonary artery , breaking it up with a combination of clot-busting drugs and ultrasonic sound waves.
I was released from the hospital 3 days later to continue my recovery with a hematologist.
After a year of anticoagulation therapy on Warfarin and blood tests to find the reason for my clot, my hematologist ruled it as “unprovoked.”
I was offered two options:
- Manage future risk of recurrence with a daily aspirin and Lovenox injections for confined travel over 2 hours.
- Continue with Warfarin.
I chose option one.
My Warfarin side effects were miserable and my hematologist felt stopping would be fine.
The knowledge I lacked
Obesity and lifestyle were listed 12 times in my hospital progress notes.
The number of times obesity and lifestyle were discussed during the decision making process to stop anticoagulation?
Zero.
I completely trusted the expert.
Four years later, that lack of knowledge on the connection between lifestyle habits and blood clots, combined with my “I’ll Start on Monday” mentality, contributed to my second venous thromboembolism.
I spent a week in the ICU during the height of Covid.
My second recovery was different from the first, from the way the VTE was treated to how it impacted me mentally.
My mind took the hit harder than my body.
Especially after learning that lifestyle is not only linked to VTE, but it moderates genetic and familial risks of blood clots like mine.
Lessons from a blood clot
Blood clot education is placed into silos of “provoked” vs “unprovoked” with little explanation of triggers, especially the ones we can modify.
It’s why I share my story.
So other women will know the link to lifestyle and the importance of becoming a confident leader of their health.
Medical expertise provides knowledge and guidance. The lived experience of patients enhances the overall understanding and management of blood clots.
Lived experience adds a human dimension to the narrative, fostering a comprehensive patient-centered approach with shared decision-making.
NEVER devalue or dimiss your experience as a blood clot survivor, lead with it.
Val Conley, Founder Speaking of Blood Clots
I’m now in a long-term committed relationship with Eliquis.
With the exception of managing chronic venous insufficiency and post-clot PTSD, I’m fully recovered.
As crazy as it sounds, blood clots have become a blessing for me.
I’ve used the American Heart Association’s evidence-based research that recommends a plant-based lifestyle for cardiovascular health (including blood clot risk reduction) to take back and change my health – including a 92lb weight-loss post menopause.
I’ve also learned the importance of being my own advocate, especially navigating health care as a blood clot survivor.
I want my story go beyond awareness to empower women to take back their health and prioritize their wellness.
There’s never a right time, ladies.
There is only now, do what you can.
