In My Shoes: Today was a great day

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Today was the Children's Liver Association for Support Service Ladies Tea. Fiona was the guest speaker and below is her speech and pictures I took during the TEA. Hope you enjoy!

Liver disease has not only affected my life but it’s also affected the lives of my family. My family knew about my liver disease before I born, when the doctors found a cyst on my liver. They decided to take me out early so that they could begin what marked the beginning of many surgeries.
I spent the first 63 days of my life in NICU. The doctors told my mom to contact C.L.A.S.S. when I was one month old. It was a comfort to my parents to be bale to talk to someone who understood what was going on. When I was two months old my parents took me to UCLA to see if I could get a transplant because I was so ill. Instead the doctors told my parents that I would only ruin their statistics because I was too sick and to just take me home and let me die. And, if in a year I hadn’t died then my parents could bring me back.
Having to put any family through that kind of pain is torture. Even though my parents were devastated by the news they were determined to do everything that they could because dying was not an option.
Growing up I had a lot of restrictions and limitations. I couldn’t do things that other kids did such as P.E. or sports. At the time I really hated not being able to do those things because I didn’t want to be different. I also got picked on a lot for having a big stomach. Even when I was a little kid people would accuse me of being pregnant.
When I was younger I always felt like I was the only one with this problem. I often asked myself why me? It wasn’t until I heard about C.L.A.S.S did I knew that there were others dealing with the same stuff.
On my 14th birthday I fell really ill with horrible abdominal pains and was hospitalized. My liver doctor at the time told me to my face that I would not make unless I got a liver transplant right then. But he said this in such a manor like it was no big deal. After he told me that I felt mad, sad, and very scared because I thought this was it. So I was sent over to UCLA again to see if I could get a transplant. When I got there the first thing the doctor said to me was you’re faking it and you need to get counseling because it’s all in your head. There was no hi or how are you, just that. I was devastated and hurt.
Then to make matters worse when I went back to see my liver doctor he decided that he would side with UCLA and told me to get counseling too. I mean how could someone who saw me in agonizing pain suddenly change their mind and say that I was faking it all.
Ever since then it’s been hard for me to trust any doctor. I always get scared that something like that will happen again. For along time I’ve had to suffer being constantly sick and in and out of the hospital in fact my health has gotten so bad that I’ve had to put my whole life on hold. It all began senior year of high school right on Valentine’s Day I suddenly started to cough up blood and at first the doctor’s kept telling me that it was only a cold. But what kind of cold causes someone to cough up blood? For two weeks straight this continued before I finally got some real answers it turned out I had what is called a Pulmonary AVM in my lung that had ruptured. *In another words my liver is damaging my lungs. I had to have emergency surgery to stop the bleeding.
Right after the surgery was done I felt so much better. I felt like a brand new person.
It wasn’t too long before that had all faded away. November 2007, I was in my second year of college and I was getting good grades and having fun. Until a week before thanksgiving I was out running errands and all of a sudden I started to cough up handfuls of blood. Right then it was like everything had just spun out of control. It took the doctors about a week before they could figure out where the blood was coming from. As it turned out once again it was coming from my lung but only this time it was coming from the bronchial artery, which is one of the main artery to your lung.
I had to have another emergency surgery once again, but only this time it wasn’t pleasant. Usually before any kind of surgery I have to platelets so that I don’t bleed out, but because this surgery had to be done ASAP they didn’t have time to do that. Instead they decided to put in a little metal clamp around the artery they were going through and they did it with little anesthesia. Needless to say I was screaming while they put the clamp in and the surgeons would not give me any more pain meds. Immediately after the surgery my leg swelled up and I had to have an ultrasound right over where they had just cut. It was the most painful thing I have ever experienced.
I’ve had to drop out of school, I can’t drive, I’m constantly fatigue, and I can’t walk a lot. All my dreams that I once had a year ago are basically gone.
April of this year I started coughing up blood again only this time they could do anything about it because part of the blood in my lung is going the wrong way. And if they did something about it to try and stop the bleeding there would be a good chance that I would be paralyzed. Till this day I still cough up blood. Whenever I start to move around a lot the more blood I cough up. The scary part of all this is that there is a chance that I could have a fatal lung bleed. When I went to UCLA this July they even told me that people don’t die from bleeding to death when they have these lung bleeds they usually asphyxiate on their own blood because they can’t cough it up fast enough.
I have just been recently accepted on the transplant list at UCLA but I still have a long ways to go. C.L.A.S.S has been a big help through all of this. They have been very supportive. It’s not only nice to be able to talk to people who know what you’re going through and understand the hardship of liver disease. But it’s nice to know that there are people out there that care some much.

There is one thing that I would like to read to you before I go it’s something that my sister wrote for me.
What Liver Disease Cannot Do:
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendships
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit