By Tina Marie Marsden, as told to Keri Wiginton
Birthdays aren’t a big deal for me. But this year was different. I’m 48. And it marks 20 years with peripartum cardiomyopathy (PPCM) and 10 years with a left ventricular assist device (LVAD). That’s an implantable heart pump.
My cousins came to Georgia from three states to help me celebrate. I’m grateful to have family able and willing to travel to see me. But how they cared for me during our mini vacation was priceless. That kind of social and emotional support is critical to managing heart failure.
Getting a Diagnosis
I didn’t feel right after my youngest son was born. I had swelling and couldn’t catch my breath, especially when I lay flat. I remember my grandmother complained of the same thing before she passed. But she was 90 years old, and I was only 28.
It took two visits to the emergency room to learn what was going on. The first doctor diagnosed me with pneumonia and sent me home with some meds. They didn’t help. Follow-up tests and X-rays revealed PPCM and congestive heart failure. I also had a hole in my lungs.
At the time, I knew only one person where I lived. But she couldn’t watch my kids. My mother couldn’t fly in right away, either. So I told the doctor I’d just come back in a couple of days.
They wouldn’t let me leave the hospital. The nurse looked at me and said, “Honey, I can’t guarantee you that you’ll live to see 2 days.”
Living With Heart Failure
Like I said earlier, I’ve lived with PPCM for 2 decades. That’s a type of heart disease that occurs around the end of pregnancy or in the months after you deliver. It often happens to Black women, like me, at a younger age than women of other races or ethnicities.
Many women recover fully from PPCM. But I started to feel a lot worse about 8 years after my diagnosis. I had to sit up all the time so I could breathe. I even bought a recliner and slept in it for 3 months. And I was so weak and short of breath that I couldn’t even make it to the restroom at night. I put a bedside commode next to my chair.
My son, who was 8 years old at the time, would climb into the recliner and sleep with me at night. And he’d dump out the pot and clean it every morning. I’m grateful he did that, but that’s not what you want for your children.
I got an LVAD in 2012. I resisted it for a while; I was a single mom with two kids, and I didn’t want a cord sticking out of my side. Eventually, I couldn’t live without it. And now I’m doing exceptionally well.
Creating My Own Support Community
To be honest, I didn’t connect with the heart failure community at first.
When you see hospital support groups on TV, they’re usually sitting in a circle sharing with people who have similar stories. But that wasn’t my experience. I’d walk into a room where 70% of the group was older men with their wives sitting next to them. They couldn’t relate to me.
I needed to talk to someone who looked like me. But I had a hard time finding African American women who were single mothers. Most people had husbands or a whole support system.
I turned to social media after I got my first LVAD. I found a Facebook group called LVAD friends, tapped into the PPCM community, and literally created my own support systems. Then I worked to make connections easier for other people.
I’m a part of two private Facebook groups. One is called My Sistas Health Matters. It’s not just about chronic heart failure. It’s a judgment-free space for Black and brown women who have any kind of health issues.
The other is Heart Sistas. It’s a group and website for women who have a cardiovascular condition or have a family member or friend who does. We connect virtually or face-to-face. We might meet up for brunch, concerts, walks, hikes, karaoke, or even vision board parties.
Releasing Is Not Complaining
There’s a lot of stress that can arise while living day-to-day with chronic heart failure, especially as a Black woman.
For example, I got pulled over the other day by the Georgia State Patrol. My heart started racing. I asked the officer to give me a second to relax and calm my heart down. To me, it didn’t seem like he wanted to help or had any compassion for my medical crisis. He continued to ask me to get out my license.
I later explained to his supervisor that I get atrial fibrillation. “AFib” is an abnormal heart rhythm, and I didn’t want my defibrillator to shock me.
The whole thing was jarring, and I’m glad I didn’t pull out my batteries. What if he would’ve thought I was reaching for a weapon? To which his supervisor said, he could’ve.
I cried the whole way home after I got that ticket. Not because of the citation. But because of how I was treated and how I couldn’t control my heart’s reaction. The experience filled me with anxiety, and I called two friends to talk about it.
It’s so important to have someone who you can share things with who actually listens. What I mean by that is that you don’t need them to tell you what to do, or say somebody else has it worse, or this is not the worst thing that’s ever happened to you.
I think there’s this idea that we need to be superwomen. And that responsibility hits Black women especially hard. Because our worries and fears aren’t just for ourselves. They’re for our children, partners, family, and communities. But we’re not built to hold all that in. We need a space to let it go.
How to Find Support
Ask your doctor if you can talk to a patient advocate like me. I have this thing I do where I walk in with my skinny jeans and stilettos. I carry my LVAD in my purse. And usually no one expects that I’m the person with chronic heart failure. I love for them to see that image.
A counselor can also be a big help. I’ve learned some great coping tools from my therapist. I sought out someone who specializes in clients with transplants or other medical conditions. I wanted to make sure I connected with someone who understood what I was going through.
And I always encourage people to search for support online.
You can go to Facebook, Instagram, or use a search engine. Just type in the name of the condition you have, or use hashtags. For example, you can use #PPCM to find other women with peripartum cardiomyopathy.
Sometimes you may not find a group, but you may find a person. Maybe there’s someone sharing their story publicly, and you can follow them. Reach out once you feel comfortable enough to talk. I’m always meeting people that way.
It’s vital to be able to network and connect with people. Try to open up and ask for help when you need it. You might be surprised at how many people have walked in your shoes.
Photo Credit: shapecharge / Getty Images
Tina Marie Marsden, chronic heart failure advocate, Griffin, GA.
Cleveland Clinic: “Left Ventricular Assist Devices (Mechanical Circulatory Support MCS).”
American Heart Association: “Peripartum Cardiomyopathy.”
JAMA Cardiology: “Comparison of Clinical Characteristics and Outcomes of Peripartum Cardiomyopathy Between African American and Non-African American Women.”
Circulation: “Why are Young Black Women at High Risk for Cardiovascular Disease?”