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Meet . . . Christina
In 2013, Christina got her much needed heart transplant.
After the surgery. . .
In late October of 2011, I began having difficulty breathing and a lot of fatigue. My doctor and I thought my childhood asthma was returning so I was treated with an inhaler and some steroids. At first it seemed to help but after two weeks things were only getting worse. I was winded and exhausted just walking to my school bus stop. So one day my Dad pulled me from school to see my doctor again. She said she didn’t like what she heard in my lungs, but thought it was probably nothing and ordered a chest x-ray “to be safe.” As my Dad and I waited in the office for the results, I remember asking him if we could go to Taco Bell afterwards because he pulled me from school before lunch. He replied as usual, “You got Taco Bell money?” When the doctor came in we were laughing and she said: “This is amazing. I can’t believe you look so well on the outside. Your insides look horrible!” My dad and I exchanged glances and asked her what she meant. She said I had fluid around my heart and lungs. So I’m thinking ok, some medicine to clear it up and we’re done. She continues to say we’ll need to admit you to take care of it. My reaction: “Dang, no Taco Bell…”
The next few hours were a blur as I was admitted directly to the University of Nebraska Medical Center’s pediatric ICU. They did the normal tests and x-rays. Then they did an echocardiogram (like an ultrasound for your heart). That’s when things went crazy. Suddenly nurses and doctors were rushing in and out of my room saying they needed to get me ready for emergency transport to Children’s Hospital across town. They told me that my heart was about twice normal size and failing. I had fluid around my heart and in my lungs. So I spent two weeks in the ICU. The doctor’s best guess is that a virus attacked my heart. Severe Dilated Cardiomyopathy as well as Congestive Heart Failure are the technical diagnoses.
In December and one hour before my 16th birthday, I had surgery to implant a defibrillator in my chest. It is a miniature version of that thing you see on T.V. that shocks people when they have a heart attack. The nurses at Children’s Hospital were great. They decorated my room with balloons and construction paper with “Happy Sweet 16” written on each piece. I spend so much time there they all feel like family now. I was in and out of the hospital a lot for a while, coming home for a week or so, then going right back in for something else.
In January I was transferred back to the University of Nebraska Medical Center to be evaluated for a heart transplant. They did a lot of testing, and pried into every aspect of my life. The testing led to the discovery that I have Chronic Myologenous Leukemia (CML), a slow-growing type of cancer that affects those cells in the bone marrow that normally go on to form white blood cells. It is incurable but can be treated, and if that is all that is wrong with you, you can live with it.
The leukemia prevented me from being eligible for the heart transplant. I started taking a low dose chemo drug for it. After three months and another bone marrow biopsy, the oncologist was able to say my CML was in “clinical remission.” The chemo makes me sick to my stomach all the time but at least it is not the kind that makes your hair fall out. I will be taking it for the rest of my life. It turns out there are not many kids with both a bad heart and CML. The doctors are not sure what interactions there may be between the drugs I have to take for each of them.
With the CML under control they reconsidered me for the transplant. I was again told I was not eligible, this time because of our unstable living situation. That brings me to my family.
My sister Heaven is 13 years old. She’s a vegetarian. She is the cook in the family. She likes to create dishes and uses the rest of us as her guinea pigs. She really is a good cook. She loves to play pranks on all of us. Because we are 4 years apart, we have never been real close but I do feel like she has my back.
My brother Liam is 11 years old. He tries to copy my sister and me. He steals my stuff (even my clothes!) but deep down I know he just wants to be like us. He gets really emotional with all the stress. It’s like he is affected the most out of all of us. I know it’s hard for him.
My brother Noah is 9. He is the crazy one. “Class Clown” is what I call him. He is the troublemaker though. He likes to mess with his brothers and tear my things up, but I know it’s just because he’s young.
My youngest brother Sebastian is 7 years old. He’s the baby of the family and he likes to make sure you know that. He’s goofy and cute, but once he gets with Noah, they’re the terrible twins of trouble. Hide all breakable objects!
Last but not least is my soon to be sister Brittany. She’s 16, like me. My family is working on adopting her. She’s been my best friend since 7th grade. I don’t think I could have made it socially and emotionally without her. She’s crazy right along with the rest of us so she fits in fine.
Oh, and I can’t forget Angel. She’s a Rottweiler mixed with a Pug. It sounds like an ugly mix for a dog but she’s actually very cute and one of my closest friends. She’s been with me since March of 2012. I wanted a friend to take care of and come home to every time I went in the hospital. A nice lady had placed an ad for Angel and gave her to me for free as a get well gift.
My dad used to have a good paying job managing the medical equipment repair at a hospital. My mom got sick and spent a couple of years in and out of mental health hospitals. She eventually left us. My dad lost his job when Mom got sick. Since Mom left, his full time job has been taking care of us. When I got sick it became mostly taking care of me. My dad seems to love his new job. The problem is he works for a non-profit organization that can’t pay him. He teaches work ethics and helps people find jobs. His boss helps a lot. She lets my dad borrow her car and gives him time off to take me to the hospital every week.
When my dad couldn’t keep up with the rent, we were homeless for about six weeks. Living in a homeless shelter was horrible. Sure it beat the streets but there were so many people living in a small space. With my immune system compromised by the chemo, I catch everything everybody else has. I got sick a few times. I hated it mostly because I had no privacy. Because of one of my heart medicines, I have to go to the bathroom a lot (to keep fluid off my heart). So that part sucked, using a public restroom all throughout the night. It was very stressful for all of us. Sometimes it seemed like we were never going to get out of there, but what hurt me the most was the fact that the doctors would not let me get on the heart transplant list until we found a house. Personally I didn’t see how it was relevant and was angry with the whole health system. I cried myself to sleep a lot, feeling hopeless. Like things were never going to get any better.
Eventually, after what seemed like forever, we found a house. Everyone got their own room. Mine’s in the basement so I get plenty of privacy like I wanted.
Finally the transplant team was ready to reevaluate my case to see if I was eligible for a heart transplant. Soon I got my letter. “At this time the transplant committee would like to place you as status 2, awaiting cardiac transplantation.” I was so happy, I cried! All this waiting and working FINALLY paid off. They sent me a pager in the mail. So when they find a heart that fits me, it will go off and I’ll be rushed to the hospital to get ready.
More. . . from her Father:
Christina was mostly at home for several months just waiting for her heart. In March of 2013 she started to get sicker. At first it seemed she was only reacting to some of her medicines. She started having a lot of nausea and vomiting. After two months of increasing need for anti-nausea medicine, she got to the point where she could no longer keep anything down — food, medicine, even water. She was admitted once again to the hospital. On June 6th, 2013, after several weeks, she was transferred from Children’s Hospital to The Nebraska Medical Center where the Heart Transplant Team could manage her care.
She continued to worsen. She went for a total of two months with hardly any nutrition. She was in a lot of pain and suffering from continuous nausea, so the doctors decided to put her to sleep to give her mind and body a rest while they continued to manage her heart with medicine.
Two hours after she was put to sleep, her heart crashed. The team rushed her to the Cardiac Catheterization Lab in an effort to use a balloon pump to help support her heart. While in the “cath” lab her heart gave out. CPR resuscitated her but her heart continued to fail. The transplant surgeon was called in. He told me he had only two choices: attach two heart pumps or let her go. They had to perform CPR on the way to the operating room. Approximately 7 hours in surgery, Christina was given two Ventricular Assist Devices (VADs), one for each side of her heart. She was kept sedated for most of the next 4 days. Fully supported by the VADs her heart began to show signs of improvement. On Wednesday June, 26, 2013 the Right VAD was removed and she was roused. She continued to improve and was eventually released from the hospital.
Christina is known to be susceptible to blood clots and suffered from several pulmonary embolisms after her defibrillator was implanted. Because of this, the transplant team listed Christina again at the highest level. They do not want her to keep the VAD implant for very long.
For the last week or so, Christina has been feeling worse and showing some of the symptoms she had just before the surgery, like nausea. Hopefully changes in medicine can fix this. So far she has been able to stay out of the hospital. We continue to pray that her heart comes real soon.
Meet . . . Oliver
Oliver was born on June 21, 2013. He is 4th in world with Molly’s identical disease. He and his family are from Grand Junction, Colorado. Oliver is on the Intestinal Transplant List.
To make a donation by check, please send to: Molly Pearce-Eaker Foundation
P.O. Box 1106
Niwot, CO 80544