Apr 3
AliciaAnne , Posted on SUPPORT NETWORK Blog

My Adjusted Life

My life “started” when I got into a car accident eleven years ago, when I was twenty-two. I fell asleep at the wheel and got into a head-on collision with a school bus. (That’s right…largest possible vehicle on the road, and I lived to tell the tale.) Thankfully, this all happened almost across the street from a hospital, so I got to an emergency room quickly. There were no real signs of anything serious on my body. In fact the police report read, “Most severe injury: bloody nose.”

When the cardiologist on call made it into the hospital, he let my parents know the truth of the situation…it was very bad. So far, he could see that I had severed my right coronary artery, ruptured my tricuspid valve and had a heart attack. But let’s not forget the little bit of blood trickling out of my nose, as noted by the police officer. He told them he was sending me to St. Francis Hospital (also known as “The Heart Center”) because they could not help me where I was. He warned them I might not make the transport, and hopped in the ambulance with me.

I was rushed to St. Francis where I had emergency open heart surgery. They put a ring in my tricuspid valve, bypassed my RCA and did some stitch work for tears they found between the chambers. They did not treat the bloody nose, for the record. Over eight hours later, they had repaired my poor heart. I should have died, they said. “You are a miracle,” I was told.

I woke up the next day a heart patient. For the first few years, it didn’t affect my life too much. But then, the arrhythmia started. Because of the scar tissue from the surgery and the heart attack, I began having ventricular tachycardia. Five years after the accident, I had my second heart related surgery: an ICD was implanted. Things continued to get worse and over the next year or so I would have five cardiac ablations and three pacemaker surgeries.

Once we thought we had the arrhythmia under control, my mitral valve started to act up. Turned out I had developed severe mitral valve regurgitation. In December of 2013 I went to Mayo Clinic for my second open heart surgery. They repaired my mitral valve and I made it home in time to spend Christmas with my family. Two months later, because of my complicated chest, the repair fell apart. In February of 2014 I was in an OR at Mount Sinai Hospital having my third open heart surgery. They replaced my mitral valve, and now, my heart ticks as it beats. After that, I had an ablation for your run-of-the-mill-post-open-heart-surgery-Afib, and started feeling great.

Then eventually, the bizarre and unpredictable combination of all my trauma induced heart diseases caught up with me. My heart failure symptoms got truly terrible and my doctor said to me, “Alicia…if you want to make it to forty, you have to stop working and relax. Write a book, change the world…but everything else? Stop.” Shortly after stopping work, I needed another two ablations and my fifth pacemaker surgery. Now, I live a greatly adjusted life from what I always thought it would be.

I always planned on being a mother. Now, I can’t. After the mechanical valve and the need for lifetime anti-coagulation, that’s not going to happen for me. How have I adjusted? I am an amazing Aunt. I let my nieces and nephews jump on my couch and eat treats before dinner. And they all love me extra special.

When I found out I couldn’t have children, I was excited to become a “career woman.” Then it all got too hard to keep up and I became an actual “sick person.” How have I adjusted? I remind myself that my health is more important than a job and that the freedom to choose where and when I spend my precious little energy is worth more than any job. I did as my cardiologist told me (I always follow my doctor’s advice, medical or otherwise!) and I just completed my book about my crazy journey and how I have managed to laugh and smile through even the toughest times…and I am more proud of that than I ever was a day at work.

I have adjusted to this life of being a way-too-young-for-it-all heart patient by taking control of the few things that are within my grasp. As I take my handfuls of medication, twice a day, I look up at myself in the mirror and see the control I have taken. I may not be able to control my heart health, but I can control my hair color…so it’s pink. I may not be able to control the scars scattered all over my body, but I can control the rest of my skin…so I have tattoos. I may not be able to control what my life has become, but I can control how I handle it…so I spend every day smiling despite it all and laughing in the face of it. I may not be able to control the loneliness that comes from living a life that no one who I am close with can understand, but I can control what I share…so I got everyone together for the Heart Walk and called us "Team School Bus." I make sure that everyone knows that I am happy in spite of my stupid heart, and because of it.
  • purple heart
    purple heart,
    Thank you for this up beat story! You energy and positive atttidude is inspiring! I will now make a point to smile each day for you and for me, a cardiac survivor age 34!
  • HeartAttacktto5K
    Amazing story and you have so much positive energy to bring to the world through your book. I wish you all the best for continued success. I'm on day 184 of my heart attack recovery. I can't change the past, but my future remains to be written. Be Fearless in your pursuit despite the matters of the heart! It's Not Over until You Win! Thanks Joe
  • aussiegram
    Wow! You don't do things the easy way! Do you have any animals in your life? Cat? small dog? Do you read great books? I want to say something wonderful, but all I can say is "wow"! For myself, I pray a lot & I read a lot! And I cuddle my animals. Celebrate what you have...Life! oodles of love, Felicity
  • Steffy 1964
    Steffy 1964,
    I had 4 Massive hemorrhagic strokes". I too am a "Miracle Woman who shouldn't be alive. I also choose to laugh and not cry. Nothing can be done about it, so why cry about it? My hair is not pink nor do I gave tattoos. I was 51 at the time of my strokes, I am 53 now. I have not had the problems you have had. Wow! The worst I have ended up with is I use a cane and have a leg brace. Cognitively I am not all there sometimes. It's been 18 months. I have trouble thinking up words, yet they tell me I am " high functioning". After reading your post, I see I need to be more upbeat. I do laugh a lot. Especially at myself. If I can't laugh at myself, then who can? My husband was with me 99 out of the 100 days I was in the hospital and rehab. I was in a coma for 45 days. And my left side was paralyzed for 2 months. I also have "Left neglect". I too was very lucky!
  • Kiahlera
    Dear Alicia, Your story was such an inspiration to me as I am sure it is for so many others. My story and challenges seem quite small compared to what you have faced and endured. The depression and frustration of living this slow paced life coupled with the isolation as friends and family drift away has been overwhelming and an adjustment I am still learning to life with. I have been viewing my glass as half empty instead of half full which was never my character and which after reading your story I intend to change. You reminded me to focus on and enjoy each and every additional moment I am blessed with and focus on what I still have, all I am still able to achieve and give. Thank you sincerely!
  • Kathleen T
    Kathleen T,
    I'm impressed by your upbeat attitude. You certainly have reason to be sad. I'm so glad you choose to go down the positive road. God bless you.
  • cdameron
    Be well and continue to let the downsides be your upsides... We all have a story but none as important as the one where we get to walk away from the hospital and continue our lives on any level. When we are in the middle of these heart problems we never quite know what it means until we get the perspective of time. You have made such good use of your time! Your message is encouraging and still shows the reality of the situation. Thank you!
  • Raiz_Ali
    This is amazing, you really are a brave girl. Its so inspirational to go through each word you wrote especially last paragraph you wrote here. Wish you remain as focused and strong as you feel now.
  • Apple
    you are so incredibly inspiring!!! thank you for sharing your story with us!
  • nilesh
    miss Alicia Anne your story is really inspirable for all so i like to thank you on behalf of all and I like to mention one thing for inner smile & happiness for you to do pranayama in early morning its a good breathing exercise & make you happy for full day if you want to search for pranayama go to you tube you can see all about pranayama Thanks
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