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Single mom Paula McCammon has lived with a donor heart since she was 24. Now, at 40, that heart has failed and she is being kept alive by a mechanical heart she calls "Stanley" as she waits for another transplant.
In her third month at Cedars-Sinai Medical Center in Los Angeles, McCammon fights to stay healthy for her 6-year-old daughter Emma Rose Joy and for "Team Paula" — friends and family from the small island community of Marrowstone, Washington.
She is one of about 1,400 patients worldwide to receive the SynCardia total artificial heart, which replaces the two lower chambers of the heart and is hooked up to an external power supply. As "Stanley" whooshes loudly in the background, an upbeat McCammon tells her story to TODAY contributor Susan Donaldson James.
I am feeling pretty great. Stanley and I are doing awesome. He is thumping away and that makes me so happy. I have been here at Cedars-Sinai for 60 days and it can wear on you.
I try to do something positive every day. I use Facebook and FaceTime with friends and family. I get at least two presents a day. Friends I haven’t seen in 20 years pop in. The family brings Emma down every two weeks.
It’s all about how you wake up in the morning and accept things. Being negative is not going to get you very far. I am not a religious person. God isn’t going to save me. I rely on myself to accept what’s going on and push through.
When I was 16 years old, I got mononucleosis, which comes from the Epstein-Barr virus. It took them a long time to diagnose me. I was very sick, very tired and slept all the time.
I got a rash all over my body and my mom took me to the dermatologist. He heard my heart do something funny and referred me to cardiologists at Children’s Hospital in Seattle. They diagnosed me with myocarditis, an inflammation of the heart muscle and monitored me every six months.
I went off to college at 18, but when I was resting and doing homework, my heart would race and I would feel like I was going to pass out. The doctor diagnosed me with cardiomyopathy — my heart was bigger and the valves weren’t closing well — and they put me on a vasodilator. It was scary, but I think because I was so young, I didn’t really grasp what was going on.
I had to quit college and move back in with my mom. I tried to live on my own and moved in with friends, but I would pass out. It was hard for me to concentrate and there were not a lot of jobs I could do because I would get so tired.
When I turned 21, they started talking about a heart transplant and a defibrillator. My whole family came to the realization that this was way more serious than we expected.
In November 1997, they put a heart monitor on me and actually saw I was going into cardiac arrest. The doctor said he didn’t think I would even make it until Thanksgiving. I had a defibrillator put in and by 1998 they put me on a national heart transplant list. I had no other choice.
I needed to have a younger person with a smaller heart, and they found a really great match — a 19-year-old boy who got in a motorcycle accident. On June 11, 1999, I had my first heart transplant at the University of Washington Medical Center.
Honestly, I lived a normal life, went back to college and chef school and was working at the same time. It was my first real job.
It’s kind of ironic that I was dating my daughter’s dad back in my teens and 20s. But it was really hard for him and he went on to date others. Ten years later, we got back together, though we never married.
I wanted to have a baby, but my original cardiologist was scared to death. I went to a high-risk OB/GYN and they weren’t sure if viral cardiomyopathy would be passed on to the baby. I joked with the doctors: “I have a man’s heart, I think I can handle it.”
I got pregnant with Emma and had her at 34. She was a little premature, but healthy, and was only the 76th baby born to a heart transplant patient.
In March of this year, the first heart transplant began to fail. I was setting up a booth for Girl Scout cookie sales and all of a sudden my stomach started hurting and I was having a hard time breathing. One of my friends looked over and said, “You look terrible.”
My ankles starting getting big and on St. Patricks’s Day, I went to the University of Washington for my cardiologist appointment. They found vessels in all three chambers of my heart were completely blocked and collapsing. I had stents implanted, but they didn’t think they would work.
Between then and June 1, I was in an out of the hospital four times and home only a total of 30 days.
Everyone in Marrowstone knows me and my story. They are making sure Emma’s life goes on, even though I am not there. My fiancé Dave has taken over the parenting, and between my friends and my sister Julie, I am getting amazing support.
Emma is really a compassionate and nice, easy-going child, but she misses not being at home. I have scars all over my chest, so she knows about my health. I keep it real, but not with a lot of detail so as not to scare her. She needs to be brave if anything ever happens to me.
The University of Washington denied me a transplant because I had had an aortic aneurysm in the heart I was born with. They said it was too high risk. So I went to Cedars-Sinai in California, where they do the most heart transplants in the world.
I was airlifted there June 5, with Julie and Emma following on a commercial flight behind me. On June 10, in the middle of the night, my stents blew out when I went into cardiac arrest. They did four hours of CPR, but couldn’t get the rhythm back. Doctors were surprised I hadn’t had a stroke or brain damage.
They put the artificial heart in June 11, exactly 16 years to the day after I had my original heart transplant. It arrived at the hospital only six hours before my cardiac arrest.
I don’t remember anything, but when I woke up from a coma, I asked if I was alive. And I was looking at “Stanley,” my artificial heart. I had to call him something.
It’s absolutely the smallest artificial heart made and is approved in Europe, but not yet in the United States. He kind of looks like a car part. I can walk around, though it’s awkward and heavy. Soon, I’ll get a Freedom driver, like a backpack with the heart pump.
Ava's Heart foundation is helping me with housing here in California and that’s so important. They won’t put you on a transplant list unless you have aftercare support and a place to live.
I know it’s going to be a miracle to be back with my daughter in Washington, but I believe in positivity. Something my mom taught me when she was alive is to always think the best will happen. I have the most beautiful child to live for and I know what it is to live 16 years care-free. I’ll get to do that again.
I have so much support in my community and my family, it would be impossible to be depressed.