I’m Piper, a 34 year old girl who just loves, Jesus, life, people, and Animals! Especially my Yorkies!
I have beat all odds surviving a severe Congenital Heart Defect for almost 35 Years! At birth I was diagnosed with Tricuspid Atresia, Atrial Septal Defect, Ventricular Septal Defect, and atresia of the main pulmonary artery. I started having surgeries at 2 weeks old which led to my major open heart surgery the Fontan in 1987.
Through the years I have had over 10 heart surgeries and 4 pacemakers. Now my heart is aging and they believe it’s time for a transplant. Transplanting a congenital Fontan patient is very difficult but they are confident that this will be successful. There is a possibility I will need a new liver with my new heart, this is common with Fontan patients.
Everything will be performed at Vanderbilt University Hospital in Nashville, TN. Please keep checking back for frequent updates on my Miracle Journey unfolds! I would love for you to be a part of it all!
“Behold I am doing a new thing.” -Isaiah 43:19
#prayersforpiper
gofundme.com/piperdavis
Full Story:
At 3 days old I saw Dr. John Morgan at T.C. Thompson/s Children's Hospital in Chattanooga. And 4 days later they performed a ballon cath and shunt surgery. They gave me little chance of survival but I made it!
At 3 months old I was placed in an oxygen tent and had my second heart surgery. I was cut from the center of my chest to the center of my back with only a 10% chance of surviving. I remained very sick with breathing issues, low oxygen, and underweight.
In 1987 at 2 years old I had my third surgery and this determined I needed major open heart surgery very soon. This was scheduled for June 19, 1987 to be performed at Vanderbilt Children's Hospital in Nashville, TN by Dr. Harvey Bender. This was called the Fontan surgery invented by Dr. Fontan only 10 years prior. The team of doctors felt that this was the best for me and that a transplant would not work considering the high mortality rate and the availability of a matching heart at my age.
The Fontan surgery took veins, arteries, and the wiring of my defected heart and basically rerouted everything for better blood flow. I spent the next 3 months fighting for my life in that hospital. I developed staff and fungi infection, my major organs began to stop working and began to harden and petrify. I was unable to eat and digest food. The doctors said to call the family in that I wasn't going to make it, but God had other plans and I began to improve and gain strength. A short time later they said take her home and enjoy her cause she won’t make it too much longer. I began to grow and gain strength and started kindergarten at 5 just as a normal child. I was very active and full of life, played tee ball and did anything I put my mind to and more.
At the age of 10 I started having arrhythmia and it was affecting my daily life. My heart rate would get up to 400 beats a minute at some times and cause me to pass out and be rushed to the ER. In 1 year I was cardioverted 19 times in the emergency room and it was taking a huge toll on my heart and body. They then decided to do an ablation which was not successful and then implanted a single lead pacemaker in hopes of helping the arrhythmia. The surgery was successful and along with the right medication I began to improve. At 15 my heart rate began to severely drop in my sleep which resulted in another ablation and a dual lead pacemaker. As the years went on I graduated high school and began college but again began to have many symptoms from my heart defect.
December 2004 I once again started having frequent arrhythmia and was hospitalized. Over the next few months I grew weaker and weaker. Summer 2005 I got a blood clot in my leg that broke off and went directly to my heart and lung. I was in the ICU for over a week and we began to talk about another open heart surgery for the near future! I grew increasingly worse over the next year and daily life became very difficult to the point that I couldn't take care of myself and had continuous help.
On November 13, 2006 I went to Vanderbilt to have another major open heart surgery they called the Fontan reversal. My body had outgrown everything they did in the original surgery. This surgery would reroute all the veins and arteries and put in a goretex tube allowing for better blood flow throughout the heart and body. The surgery was a huge success and I was home two days before Thanksgiving. I felt great and did well for a few years.
In 2010 I starting going into Congestive Heart Failure (CHF). They rushed me to Vanderbilt and immediately began starting treatment to get the fluid off my heart and body. They sent a transplant team in to do an evaluation and keep a close eye on me. It was a week before Christmas and they told me and my family to plan on being there through the holidays. Many family and friends came to visit and I began to improve and miraculously got better. On Christmas Eve I begged them to let me go home for the holidays. They agreed I didn't need a transplant at this time so they finally released me the afternoon of Christmas Eve. Once I was home I began improving and God continued to heal me.
In 2013 I had a triple lead pacer implanted to help with the frequent arrhythmia. Since then I had felt my heart getting tired, a little more and more each year.
In 2017 I began to see the Heart Transplant Team every 6 months. August 2018 they told me they believed it was time for me to do the officially transplant evaluation. My answer was "no" because I needed time to process this all! After a year of praying, researching, and talking to my family about everything I finally felt peace about doing the evaluation.
Jan 5-8, 2020 I spent a few days full of every test you can imagine, meeting doctors, psychologist, social workers, nutritionist, finance coordinators, and more. The next step is having my full Liver evaluation in the next few weeks. My transplant doctors have said they expect the transplant to be within the year!
Fundraising is a big part of having a transplant. Although I have insurance everything might not be covered. After transplant I will be in the hospital for 2 weeks and have to stay in Nashville for at least 6 weeks after I'm released. During that time my family and I will stay in an apartment which is very costly at around $2500-4500 a month. We will have the expense of food, gas, trips back and forth to our hometown if needed. And also the expense of paying our bills back home while in Nashville. After I am released to go back home there are monthly heart biopsies and checkups in Nashville that I will attend. Very expensive anti-rejection drugs for the rest of my life and many more expenses that come with this new heart.
This transplant could come in a few months or a year but you have to be ready at all times to get that call! There are a few ways we are planning to fundraise and I can update as they come! Remember every little bit helps no matter how big or small!! We are extremely thankful and blessed by all who give and contribute to my journey! If you have any ideas on how to help or just want to reach out feel free to email me, I'd would love to connect with you!
Thank you so much and God Bless You All!
*Our official hashtag is: #prayersforpiper
"Behold I am doing a new thing." Isaiah 43:19
