Mothers Day

Mother’s Day Reflections from Moms in our Community Living with Genetic Dyslipidemias

Mother’s Day is a beautiful day devoted to the mothers and mother-figures who give us life, nurture our growth, and love us unconditionally. It is filled with emotion and gratitude. When you live with a genetic condition like familial hypercholesterolemia (FH) or high lipoprotein(a), Lp(a), those emotions can also be complicated by concern and anxiety about the health of every member of the family. We asked two of our Family Heart Ambassadors to share their thoughts and feelings surrounding Mother’s Day.


Jenny W. Family Heart Ambassador
There are certain days and dates when you know your life will be forever changed.
My significant moments are probably similar to yours: The day my now-husband, Kyle, and I shared our first kiss. The day Kyle proposed. Our wedding day. The day I found out, after years of trying, that I was pregnant. The day our son, Sam, came into the world.
Then, there was the day my heart stopped, hours into a heart attack. I was 41; Sam was 21 months old.
I’d waited nearly 18 hours from when my heart attack symptoms first appeared to seek medical treatment. It was only at Kyle’s insistence that I even went to the hospital.
Several hours after I was admitted, I asked for something to help me sleep—and regained consciousness to the sensation of chest compressions being performed on me. My heart had stopped for five minutes.
I was rushed into surgery, where a stent was inserted via my wrist, opening up my left anterior descending artery, which had a 95% blockage.
Jenny W Family Heart AmbassadorIt took a few days for the shock to dissipate and the questions to start. Why had I had a heart attack? Apart from being overweight, my risk factors appeared minimal. I was a lifelong nonsmoker, a vegetarian since middle school, a relatively active person, an infrequent drinker—you get the idea.
After letting a few months pass—and allowing my body to adjust to its new normal—she suggested I have my blood drawn and tested.
It was through those tests that I learned I have elevated lipoprotein(a). And I learned that Lp(a) is genetic.
After that, I had Sam’s Lp(a) tested. Like me, he has good LDL and HDL numbers. Unfortunately, he also shares my elevated Lp(a), albeit at a lower level. So Kyle and I set up an annual appointment with a pediatric cardiologist to monitor and protect Sam’s heart health as much as possible.
In my worst, most fear-filled moments, I recorded myself singing bedtime lullabies to my son, sure that I wouldn’t be in Sam’s life long enough for him to develop lasting memories of my voice—of me.
I’m glad I was wrong.
As an older mom—and one with heart disease, to boot—I do my best to keep myself in good health, to control what I can, even if I can’t control my Lp(a). For me, that looks like biweekly workouts with a trainer. More time walking, rather than driving. Moving my body in a park, rather than keeping it parked in front of a TV. Seeking things that bring me joy and fulfillment rather than stress. Meditating as time allows.
And while none of these things reduce my Lp(a), they make me stronger. More energetic. More confident in my capacity to be present for my kid.
These days, Sam and I wrestle. We exchange jokes. I read him bedtime stories and sing him silly songs while he brushes his teeth. I walk him to his elementary school and cheer him on at T-ball games. He knows that I had a heart attack, but more than that, he knows of me as a mom who can carry him on her shoulders, who has the energy to play tag, and who will swing him around until we are both overcome with dizziness.
I have a vision for a future in which I see Sam grow up, grow terrible facial hair, and maybe even grow a family of his own. There are several clinical trials that show promise for the future of Lp(a) treatment. And in the meantime, I use my voice to educate people about Lp(a), and to encourage broader testing of the condition.

 

Written by Jenny W.
Family Heart Ambassador

As Mother’s Day rolls around, I often reflect on my role as a mother. Being a mother is the single most important thing I have done in my life. That being said, it’s important that I talk about what could have easily taken that from me.
I was diagnosed with FH and elevated elevated Lp(a), after my brother died at age 24. I was a senior in nursing school, trying to process my grief and understand what was happening. Living through the grief, it took me over three years to find someone that would diagnose and help treat these genetic conditions. It took so long for anyone to help me understand what was happening or how I could take control of my life and pursue my ultimate goal of being a mother.
When my daughter was born, the impact of my disease was much more apparent. I was no longer living for myself but for her. I also knew that the possibility of passing this gene on to her was real. Fortunately, the cardiologist who diagnosed me also encouraged me to get her tested early.
Realizing that I passed this gene on to my daughter was heartbreaking. However, I knew that I would give her all the opportunities to make sure she would remain as healthy as possible.
When I reflect back on the meaning of Mother’s Day, I am overwhelmed with emotions. Being a mom is the single best thing in my life. I am grateful to be here with my family, but also grateful that I can be an advocate for my community and allow others the same opportunity that I have had in my life.
In my work as a Family Heart Ambassador, I want to offer the same to anyone else that has been diagnosed with or living through the grief of losing someone to heart disease.

 

Written by Lisa R.
Family Heart Ambassador

 

 

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