Hi my name is Rachel and this is my story:
I'm 22 years young and I work at Trinity Lutheran School in Orlando, Florida. On February 20, 2015, I was at work, having a perfectly normal day when all of a sudden I started coughing up a lot of blood. My dad rushed me to the hospital and they immediately started doing tests. After many CAT scans, MRI's and blood tests, the doctors found a huge blood clot in my right lung. They suggested that I should undergo surgery to blast the blood clot by going through the arteries in my legs, through my heart, and end in my right lung. A simple procedure turned out to be disastrous.
When I woke up, my doctors explained to me that the surgery was a failure. At first everything went as planned, but when they went to pass the heart and enter the lung, there wasn't an artery to connect to it. He informed me that I did not have a right pulmonary artery. This means that I have a rare birth defect. Infants that are born without a right pulmonary artery normally do not live past 90 days. And those that do survive have to have multiple open heart surgeries throughout their life. And here I am, 22 years young, without a hint of medical issues.
My life will never be the same.
Sadly the story doesn't end there. The massive blood clot in my right lung and my pulmonary atresia were just the beginning. After even more tests, my doctors discovered many blood clots throughout my left lung as well. They then explained to me that because of these clots and issues with my pulmonary artery, it lead me to have pulmonary hypertension. This means my lungs have extremely high pressures, making it even harder to breath and function due to the pain. Basically I have only one functioning lung. Not to mention I had the flu during all of this which compromised my respiratory system.
With all of these issues, my poor hearts been working so hard for my lungs. Being that the heart is a muscle, the more it worked, the thicker the walls became. And unlike a normal heart that the left side is double the right, my heart has grown so that the right is larger than the left. Causing even more hypertension.
I also have a deadly bloodclot in my heart chamber as well.
As a temporary fix the doctors put me on a drug called Xarelto which is a blood thinner. It was supposed to prevent any future clot from happening and help break up fresh clot in my lungs and heart. Unfortunately my blood had a allergic reaction to Xarelto and it caused my blood platelets to drop too scary low levels. Now my doctors have taken me off of that and switched me to Lovenox until I can find a blood thinner that works for me and my body. Lovenox is a stomach injection every 12 hours.
Everything about this is so rare and terrifying. Every time the doctors walk in, they have to tell me something worse. And throwing words around like lung failure, open heart surgery, heart failure, lung transplants. Spending four nights in the ICU and the rest in the Cardic Intervention Unit.The nurses try and joke with me telling me it is great to have someone that has something new and exciting going on so they can learn about it. Doctors all over the country are being contacted for their expertise. I'm signing release forms so my case can be studied in unversities. So much is happening in such a short period of time and it's horrifying.
Finally some good news:
There is a hospital in San Diego California my doctors want me to go to. They say it is the "blood clot capital of hospitals". I would fly there once it is safe for me to do so and be evaluated and hopefully have surgery . It would be an open chest surgery where they'll cut my front sternum bone to get access to my heart and lungs. They will remove the clot and try to attach pieces of my pulmonary artery to my lung. In doing this, hopefully it will let my right lung start functioning relieve the hypertension.
However the longer I wait to do the surgery, the bigger the chance I'll need a lung transplant or other permanent damage.
Through all of this I have had the best support from my family, friends, coworkers, students, doctors, and nurses. I know that God has a plan for me and I put all of my faith in him. My only worry is the financial burden this is on my parents and would like to help any way I can, which is why I'm starting this fundraiser. Please help me go to San Diego for the next chapter in my life. Thank you so much.