I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Tuesday, February 7, 2012

CHD Awareness Week--Faces of CHD: Jessica's Story

Today starts off Congenital Heart Defect Awareness week. Every day until the 14th I'll be posting a story about some one affected by a CHD. Today is about a CHD Adult, Jessica. I hope you will find her story inspirational & keep her in your thoughts as she still fights with a congenital heart defect ♥

Jessica Goffard, 10/3/89 Tricuspid Atresia, Severe Hypo-plastic Right Ventricle, Mitral Valve Leak, Pacemaker.
I had always known I had a heart condition, a heart condition that required me to take medication every morning. Horrible tasting medication that I always had to mix with orange juice. I hated that medicine. I also had medication that tasted good. That didn’t make up for the other medication, but it did help. My heart condition also required me to see a heart doctor every year. A heart doctor whose echo technicians pushed to hard and made me cry. A heart doctor who wanted blood work, I hated needles, and stress tests that also made me cry.
My childhood wasn’t normal. My dad was diagnosed with Acute Myeloid Leukemia when I was about six and we spent a lot of times in hospitals and doctors appointments, both for me and him. I had heart palpitations so I had to wear a holter monitor to school when I was in the first grade. It was embarrassing, my mom wrote a letter to my teacher to let her know what it was and she decided to announce it to the class. She asked me to stand up and show everyone, and when I refused, she had them crowd around my desk. I was on daily diuretics so I used the bathroom a lot more then others. I couldn’t keep up with other kids my age, and I couldn’t run the mile. I remember before I got the doctor note saying I couldn’t run the mile I would cry and complain. It hurt so bad to run, but my teacher told me to suck it up. When I finally got the doctor note excusing me from it, his face was priceless. I was fine not keeping up though. I never liked running anyways, and I was use to it. I learned my limits at a really young age. It never bothered me, I could still play with my friends, I loved riding my bike and rollerbladding. I just rested a little more often then the others. Especially when it was hot out, heat would make me sick. I got sick a lot more then the “normal’ kid. My brother, two neighbor kids and I set up a lemonade stand one summer. It was really hot out and we weren’t getting much business, I wasn’t feeling well because of the heat and my heart so I went inside to cool off. When I went back outside I found out I missed the lady who gave everyone a quarter, not just the one for the lemonade. Not a lot of money, but a big deal to a little kid. That’s when I realized I wasn’t normal.
I eventually began asking more questions about my health. I learned my heart condition was called Tricuspid Atresia, though I still had no idea what it meant and didn’t really feel the need to find out what it meant. When I was eleven, my dad passed away from complications of his AML. For some time afterward I didn’t question anything anymore, I didn’t want to know. Shortly after my dad died we moved to Cape Cod Massachusetts. My curiosity came back after I began seeing a new cardiologist there. I was 12 when my brother and I pulled out a medical book and began asking my mom more questions. When I found out I was missing most of the right side of my heart I was completely shocked.
I was thirteen when we moved to Arco Idaho. I was excited to move, no one knew me there and I could be any body I wanted, and all I wanted was to be normal. I hated my new cardiologist in Boise. I was having rhythm issues and she was making me wear a holter monitor. I hated holter monitors ever since the first time I wore one. I was allergic to the stickies, and I didn’t like people seeing it. When I was about fourteen I began having more palpitations and at one cardiology appointment the doctor said she saw something weird on my EKG and wanted to see me back shortly. But shortly before my appointment it snowed and we couldn’t get to Boise. My cardiologist decided to drop me as a patient because of it. I know I should have found another cardiologist and find out what the last one saw, but I couldn’t. I knew this was my one chance to be normal. I had just started high school and all I wanted was to be normal, to be accepted. So I decided to not get a new doctor, and to stop taking my medications.
The next two years I was normal. I made friends, I rebelled and got into trouble and I ignored my heart. Slowly things got worse and I was having more rhythm issues, but still I ignored it. I made a habit of staying out till three in the morning with my friends and partying. Drinking and doing the normal rebel thing. I hated that I couldn’t control my heart so I began to control my eating. My mom eventually got fed up with me and sent me to a counselor who diagnosed me with bipolar disorder and anorexia. She wanted me to see a cardiologist too, but I wouldn’t budge. I still wanted to try and be normal, even though I had more diagnosis’s and was watched carefully.
It was getting harder though. I was out of breath more often then usual and arrhythmia’s happened daily. I was seventeen when I began babysitting a little boy. He was three months old when I started. I helped him learn to crawl, walk, and talk. I loved this little boy, he was my buddy and I was his “Dess”. He helped me get back on a good path. I loved playing with him and chasing him around. But eventually I couldn’t play outside with him anymore. I couldn’t chase him room to room and I had a hard time dancing with him. When I could no longer walk room to room that’s when I knew I needed to see a cardiologist. I was so out of breath and my chest hurt so bad I knew I could no longer put it off anymore. I was eighteen and taking over my own health care, I was scared to see a new cardiologist. But I managed to find an adult cardiologist. My  mom drove me to my Boise appointment, but I managed the courage to go into the appointment alone. After my EKG, I talked with the cardiologist, set up an echo and was on my way. I didn’t think anything of having to go back for an echocardiogram. It was a normal thing to me. But I had my mom come with me anyways. The echo technician was asking weird questions during, that’s how I knew something was wrong. She finished the echo and walked out, her and the cardiologist came back in shortly. I think anyways, that day was such a blur, I knew something important was coming and I was scared. They told me I was in atrial fibrillation. Another diagnosis, I couldn’t help but cry. I was scared and sad, why was this happening to me? Why was I always the one who was sick? Why was more always being added?
It was a few weeks, to a couple months before the phone rang. That day was a normal day in all respects. I had just turned nineteen and I was baby sitting my little buddy. We where dancing, well he was dancing, I would dance a little then have to catch my breath. But I was dancing when the phone rang. I knew immediately by the number on the caller ID that it was a doctors office and assumed it would be my cardiologist, though I had no idea why she was calling. When I answered the phone it was confirmed, it was a cardiologist, just not mine. It was a pediatric cardiologist who was recommended by my adult cardiologist. Except I never got the call saying they where recommending him. They receptionist told me  that because I had the Fontan, and because the Fontan usually needs to be redone, and he was a pediatric cardiologist, he would know best how to take care of me. In a matter of seconds I went from thinking I was okay to all of a sudden having a new cardiologist and possibly needing another open heart surgery.
I knew I had surgery when I was a baby to help me live. I have scars under each shoulder blade, and a chest tube scar on my side, from shunts that helped oxygenated blood flow through my body better. I have a long scar down my chest, and two more chest tube scars on my stomach from my first open heart surgery. But I never thought I would need another one. The thought scared me. During my first open heart I almost died 3 times. The first procedure they did was the Glenn, but if failed so they had to move on to a different procedure. The second procedure failed to and they only had one option left. They didn’t have high hopes for the Fontan it was new, and my parents began to pray that if I was going to die, it would be quick and painless. But by the grace of God I did survive. But a four hour surgery turned into a twelve hour surgery. I had failure to wean off bypass and when my mom and dad where finally able to see me, I had a massive seizure which resulted in me being in a coma for two weeks.
But I did what needed to be done and set up an appointment with the new cardiologist. He wanted a chest CT scan so I did it. I did the echo’s and EKGs just waiting for him to tell me whether or not I would need another surgery. Waiting to find out was one of the hardest things I had to do. But I did it and eventually he told me I needed a cardiac catherization so they could see how well my heart was working. Waking up from the cath was hard. Recovery was crowded and everyone was just laying around looking like they where dead. I didn’t like that. My throat hurt and I found out that even though they said they wouldn’t intubate me, they did because I was coughing so hard and waking myself up and that I needed to get checked for asthma. Really something else to add to all this? I was so excited to get back to my room and see my mom. We began joking right away, which really helped me. My cardiologist was there to meet me and he introduced me to an electro-physiologist. It was then he could tell me I needed another open heart and pacemaker implant.
The wait for the open heart surgery was very hard. I moved back in with my mom because I knew after I would need help. I was very emotional, I couldn’t help but ask “God why me? What did I do to deserve this?” And one day I put my defect into the facebook search and found a group. I was shocked I didn’t know how common heart defects where. So I joined the group, and many others there after, the support was a tremendous help. But I was still scared. I got word from my cardiologist the my surgery would be the beginning of July 2009 in Salt Lake City. I was scared and once I got the date I knew I was going to die. I knew I would be seeing my dad again very soon. Everyone in my family felt bad about surgery but they just kept being positive. They told me “You’ll be fine” so on and so forth. I at one point broke down and put as a facebook status, so that all family across the country could read it, that we did not know I was going to be fine and them telling me I would be just wasn’t helping. Because we really didn’t know. My life began with miracles, I was suppose to die at birth, but I didn’t. And I could hope and pray for more miracles, but we didn’t know I was going to get it. I knew my life would end with my going to heaven to see Jesus, but I did not know if that would be when I was old or not. Shortly before surgery I wrote notes to the very important people of my life. My mom, grandma, brother and boyfriend at the time. I left for Utah resigned to the fact, I wouldn’t be coming home. But things happened, I met the surgeon and we disliked each other instantly. Words were said and surgery was canceled. Surgery was changed to Spokane Washington for July 24, 2009.  The wait this time was much easier, and I knew I’d be okay. Surgery came faster then we where hoping, I was still scared, but I knew I could do it this time. They told me over a week in the hospital, but I only spent six days. I was expecting excruciating pain, but it was more just soreness. I hate hospitals but we had fun. We joked a lot, and laughed. We spent time walking hallways and playing games when I wasn’t to tired.
Recovery once I got home was harder then I thought. For the first week I was so tired I couldn’t do much. But slowly I got back to normal, except things where better, I could walk room to room again, and worse, I was extremely depressed, bad insomnia and horrible nightmares. I was on fifteen medications daily and they made me sick.
It’s been over two years since surgery. The nightmares have slowed down, but haven’t completely stopped. The insomnia is here, full force almost every night. I got counseling and was diagnosed borderline personality disorder along with the bipolar disorder and have the depression under control now. My medication at one point dropped down to just five pills a day and shot right back up to fifteen pills daily.
Life has been interesting, I recently found out that one of the procedures they did during my last surgery failed and I’m back in atrial fibrillation. I had to have a cardioversion and am back on heavy duty pills. After fighting for almost three years I finally got Medicaid.
I slowly learned different things about my heart over the past two years. I most likely will never have a child of my own, even though its been a life long dream of mine. It’s heart breaking knowing a pregnancy could kill me and the baby, or that I could pass my heart defect on to the baby. I’ve cried many times over the fact that this just isn’t fair. Why can people who abuse children get kids so easily, yet I’ll never have one?
My heart wont last forever, and I will most likely need a heart transplant in a few years. And again I question, why me? Why does someone have to die in order for me to live? What makes me deserve a life and not them?
Many thoughts have gone through my head these past two years. The thought that seems to reoccur the most is the “why me? What did I do to deserve this?” But I’ve come to learn I didn’t do anything. It just happened, there’s no reason why (though I wish there was) and there’s no one to blame. I’ve never been normal, but that’s okay, I was never meant to be normal. My life is still amazing, a daily miracle. I have as much fun as possible, yes someday I’ll need a transplant, but that’s not today, so no need to worry about it yet.
I’m excited to finally gotten my life back on track, it took longer then it probably should have but I made it. I plan on studying early childhood education. I will live my life to the fullest and have fun. I will just take it one day at a time.

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