By Jenna Bell, as told to Marijke Vroomen Durning
The last thing I expected to hear when I was 23, just 2 years out of college, was that I had heart failure and could die anytime from a sudden cardiac arrest. It was 2008. I had moved to just outside Atlanta, GA, to teach special education while the man of my dreams, Dan, was deployed to Iraq. I wasn’t supposed to get sick.
I was working two jobs, teaching full-time and retail part-time while studying for my master’s degree. I was pretty busy and I was missing Dan, who was 12 months into his tour. So when I noticed my heart was racing even when I was sitting still, I didn’t really worry. I figured this was because I had a lot going on and this was how my body reacted.
Off to See the Doctor
The racing heart continued, and I finally went to see my doctor, expecting to be told all was well. He did an EKG to check my heart rhythm, and he said that although I was young and healthy, the results were a bit abnormal. He wanted me to see a cardiologist. I still wasn’t worried, though. I was young and healthy, right? Looking back, I could see that I had that “I’m invincible” mentality. I was still going to the gym. I was doing yoga. It’s the 40-year-old man clutching at his chest who has a heart attack, not me.
I was wrong.
After several tests, I was diagnosed with heart failure. Here I was, 23 years old, my parents lived in New York, the love of my life was in Iraq, and my heart could stop at any moment. And they let me go home! I think that was the weirdest thing I ever experienced. They gave me a prescription for three medications and sent me on my way. I think that was why I didn’t take it seriously – because they let me go home.
The drugs made me feel terrible. We had to lower my blood pressure and heart rate to take the load off my heart so I wouldn’t go into cardiac arrest while they tried to figure out why I was in heart failure. I had no family history of heart problems and, as the doctor said, I was healthy. They couldn’t find any answers, so I was diagnosed with idiopathic cardiomyopathy. "Idiopathic" means it happened for some unknown reason.
Sharing the News
I had to tell Dan, but my situation wasn’t something I could tell him in an email – we had to talk. This was in 2008, before FaceTime and similar apps, so I had to arrange a phone call. We had been together for 4 years and were going to get married, but because we weren’t officially engaged, we knew the army wouldn’t allow him to come home to be with me. It was a difficult conversation, but we got through it.
Telling my parents was also hard. I didn’t know if I needed them to come or if I could manage on my own. Everyone was very supportive, but telling them was hard.
I had a heart catheterization in May so doctors could take pictures of my heart. After I went home, I developed a complication and my roommate brought me back to the emergency room, where they admitted me to the hospital. It turned out to be a good thing because I was in the right place at the right time.
I had been on a waiting list to see an electrophysiologist, a doctor who looks at the electrical workings of the heart. He happened to be at the hospital while I was there, and when he saw me, he said right away, “This girl needs a LifeVest now.” A LifeVest has an external defibrillator to restart your heart if it stops or runs too fast to keep you conscious. It has to be worn 24/7, except when bathing. I have to be honest, I was annoyed. It was my birthday, and all I could think of was that I would have to wear this ugly thing when I welcomed Dan home. I didn’t want to wear it. But I think needing that vest made the whole heart failure thing more real to me. Another thing that made it more real was that I couldn’t return to teaching. I was sad about that because I missed my kids.
Anyway, I wore the vest from May 14 to July 23, my dad’s birthday, when I had surgery to insert an internal defibrillator. Life was good after that. Neither the LiveVest nor the internal defibrillators had to shock me. I was moving forward. Now, I wanted a baby.
I Did Have a Baby!
When we moved to Kansas – if the army says you move to Kansas, you move to Kansas – I found a doctor willing to work with me. We did tests, and he felt it would be OK for me to get pregnant. So I did, and my pregnancy went well. They did induce me 3 weeks early to make sure my cardiologist would be there when I delivered, though. The hospital, St. Luke’s Hospital in Kansas City, now has an entire program for moms-to-be who have heart failure.
I had a beautiful baby girl who will be 11 this December. Recovery after the delivery wasn’t problem-free, unfortunately. I developed fluid in my lungs that needed to be drained, but I bounced back quickly. In 2014, we adopted another baby, a boy, to complete our family. My cardiologist didn’t want me to risk another pregnancy. We were happy. But in 2015, I started not feeling well again. I was permanently exhausted and couldn’t keep up with my kids. In March, I was put on the heart transplant list.
Waiting for a Heart
At first, I wasn’t an urgent case. I was still at home and taking my regular meds. But in September, they had to give me a PICC line (a special IV that can stay in longer than a regular one) to get constant medication to support my heart function. I had water in my lungs and was taking a water pill to get rid of it. That was the scariest symptom, not being able to breathe. I wasn't eating. I wasn't hungry. I was losing weight and muscle mass. By January 2016, I was admitted to the hospital and told that I wouldn’t be leaving until I had a new heart.
The doctors inserted a balloon pump while we waited for my heart. It’s a device that inflates and deflates with the heart to help the blood move. This gave me enough energy to walk laps around the unit. I was determined to keep up my stamina. I walked miles around that unit!
I had a lot of faith in my doctors. My parents were really nervous, and I remember my mom asking me how I could be so calm. But I really trusted my cardiologist, Dr. Anthony Magalski. I trust these doctors so much that although I now live in Colorado Springs, I still fly back twice a year for my tests. I was nervous when the time came for the actual surgery, but I knew they would take care of me. I got my new heart on February 16, 2016. Mine was heart transplant number 689.
Life After the Transplant
When I woke up, I was groggy, but one of the first things I remember was getting that post-transplant echocardiogram (a test that lets the doctor see your heart beating and pumping blood). I remember thinking, Oh my gosh, that is so loud! I remember being so taken aback by it because I had never heard my heart loud before.
I did have a few complications. It turns out I am allergic to one of the most common immunosuppressants, drugs I have to take to keep my body from rejecting the new heart. I had two seizures, something my cardiologist said he hadn’t seen in his 18 years of practice. My husband likes to tease me, saying that if anyone is going to do something like that, it will be me.
Life is good again, thanks to all the help and support I got from my health care team. I’d like to let other young adults with heart failure know that your team is so important. I know that insurance can make things challenging, but it’s essential to have faith in your team. If you do have insurance, connect with them to see what providers in your area are covered. That way, you can switch providers if you need to, if you’re not satisfied with the care. The American Heart Association is another amazing resource. I now have a community of women who have gone through the same thing, and we support each other.
And one more thing: Use your support system. It may not be who you expect it to be, but embrace the support wherever it comes from.
Photo Credit: aluxum / Getty Images
Jenna Bell, Colorado Springs, CO.