Alyx was born with a disease that could cause her liver to fail. Here is her story:
I'm like any teen girl. I'm boy-crazy and totally into fashion, and my favorite thing is hanging out with friends. But I'm not really your average teen. At 16, I'm the first person to survive four organ transplants. When I was born, I was diagnosed with a disease called biliary atresia. Nobody knows what causes the disease, but it blocks ducts in your body that carry bile from your liver to the intestine. That creates a backup of bile, causing the liver to fail.
I was so ill as a baby that I had to get a liver transplant at only 7 months old. But the transplant didn't take, so I had another when I was 2. That also failed so, at age 3, I had my third transplant. That time, they gave me a split liver, which means they used only a piece of someone else's liver. Since my donor was a 12-year-old, the whole liver would have been too big for my body. All of my donors had recently passed away, and I will never forget how fortunate I have been to receive their organs.
A Semi-Normal Life
After each transplant, my doctor has never said, "OK, Alyx, you're healthy." As an organ recipient, I have to be watched carefully and tested for the rest of my life. When I was 6, I was well enough to start kindergarten, but my doctor warned me to be cautious about certain activities. Because my liver was still relatively big for my body, it caused my spleen to become enlarged, so I had to be extremely careful not to injure it by bouncing around. I could participate in phys ed, but I wasn't allowed to do gymnastics. My doctor wasn't too thrilled when I became a cheerleader.
I was pretty healthy from kindergarten until junior high school, but my parents were always much more protective of me than my two older sisters. It wasn't bad, though, because they still let me be a regular kid.
The medications I've had to take have affected my physical appearance. One side effect is stunted growth. I'm only 5-foot-2, while everyone else in my family is 5-foot-8 or taller. But, other than that, I look normal. What I hated, though, was that I didn't feel good in bikinis because of a huge scar across my belly. I felt so self-conscious about it. On the other hand, my scar was a great reminder of how incredibly lucky I am.
Even so, when I was 7, I begged my mom for plastic surgery to remove the scar. My doctor said I was too young because I was still growing, and that devastated me. But my mom promised I could have it fixed when I was old enough, so in seventh grade, I had the scar removed. I bought bikinis and midriffs to show off my "new" belly.
A Sudden Turn
But shortly after my scar-removal surgery, my world fell apart again. Over the summer, I was napping at least eight hours during the day. I mentioned to my room that my lips and nose were numb, and she took me to the emergency room. I had a sinking feeling that my liver was failing again. Sure enough, blood tests showed I needed another transplant right away. My whole family was scared, but I tried to be brave. I kept thinking, "It'll be all right. I'll get through this." But when they told me the bad news, I couldn't stop crying--and I'm not the type of person who cries very often.
That day, a helicopter transported me to UCLA from our hospital in Orange County, Calif., to wait for a donor. It was weird, because I didn't even feel sick so I kept thinking, "This is just dumb!" But I realized just how ill I really was when my middle sister visited me from Arizona. She took one look at how yellow and sickly I was, and she passed out.
As my liver was failing, I was put on dialysis since my kidneys were quickly failing too. All the medications made me huge from water retention and, within weeks, I went from 97 pounds to 125. I felt horrible--my back felt like it was going to snap in half, and my dad had to lift me to move me. My room stayed at the hospital with me the whole four months I waited for a liver. Friends came, too, but I kind of didn't like them seeing me in that condition. But their support really helped, especially since I was so dose to dying.
Finally, there was a liver for me. I was so excited! The nurses did all the prep work--like, a series of enemas and blood tests--but, at the last moment, my doctor realized the liver wasn't right for me. I was so upset, and I was certain I was going to die. I gave up hope. It was just hard to be isolated in the intensive care unit for so long. A few days later, I completely lost it. I ripped all the IVs and monitors from my body and tried to leave the hospital. The nurses found me and restrained me, and I'm grateful they did. If they hadn't, I would have died. After that, they took me outside in a wheelchair every day.
The Gift of Life Again
About three weeks later, they located a liver that was right for me, but I tried not to get too excited. I'm strong, but I knew I couldn't handle another letdown. Battling for my life was so hard. When they rolled me to the surgery room, I tried to have courage. But my parents were crying, and I remember feeling terrified I'd never see them again.
When I awoke from surgery, it was two weeks later and I was really drugged up on morphine. The recovery wasn't bad, though, because all the complications happened while I slept. My liver had split open, and blood spilled everywhere. I'm glad I wasn't awake for that.
I was in the hospital another nine weeks and, somehow, I managed to keep up with schoolwork. But I missed my social life. All of eighth grade was down the toilet, and I hated that. But, now, I'm healthier than ever. I'm much stronger and more alert, my blood testings are perfect--they never were before.
At times, I think about the children who passed away and allowed me to have their organs so I could survive. I don't think anyone can ever know how truly grateful I am, but it also makes me feel selfish that I got to live and they didn't. It's such an honor to have these kids' organs. I've never been in contact with the donors' families since they chose to remain anonymous, but I wrote thank-you letters that were delivered to them. I would love to be an organ donor myself one day but, because of my illness, I'm not sure if my organs would be usable. Well, maybe not my liver.
A Changed Person
This last transplant has made me more appreciative of the kindness of others. I think about all my hospital roommates and worry about how they're doing. I'm much more aware of people in distress, and I'm always ready to help them. Even so, I don't get too emotional when I see people going through hard times. I've learned that things in life might not always turn out so well. You have to accept the bad with the good. Things don't always go your way, and you sometimes have to deal with things you might not like. I fully accept that. When I look back at everything that has happened to me, I really believe there was a reason for it. Maybe it's just so I could share my experiences with other kids or even with people who might choose to donate as a result of hearing my story.
This experience has helped me evolve as a person. I take nothing for granted, and little things don't bother me. What's most important is health--and how you feel about yourself and others. I've never had moments where I've felt, "It's so unfair!" I wouldn't be the person I am now if I hadn't been sick for so long.
If you're going through a tough experience, just view it as though it were meant to be and know you'll get through it. Be happy for what you have. Just because you don't have a certain pair of jeans or a Paris Hilton inheritance, it doesn't mean your life sucks. Appreciate the good things you have in life, and be happy ... because you are blessed.
Alyx Dominguez as told to Sandy Fertman Ryan
POSTED ON 12/30/2009 7:01:00 AM
POSTED IN illness