"Babe, those titles suck!"
I was so hurt. Suck? How can they suck? Anyways, I brushed it off and left it alone. Then right now, before writing this blog, I thought back to my conversation with my fiancée and it really bothered me that he thought my titles were sucky. I mean, a title is what makes people interested in something in the first place. I want to grab readers. So I started thinking about what my topic today was and how I can be creative with that. Let me know what you think and if you got the reference. Hint: it's has something to do with David A. Adler .
March 21st 1995 I was born to my mother and father, Roxana Borjas and Franklin Zelaya in Tehucigalpa, Honduras. I was the second born to my mother and the first, to my father. I weighed about 7 1/2 pounds and I'm not exactly sure how many inches long. I was healthy and I was able to go home the next day. When I came home, everything was fine the first couple days, but after about two weeks my mom began to worry about me. I was vomiting quite a bit, my stool was pale and chalky, I had jaundice, and I became very colicky. She took me to the doctor and after a lot of test, they told my mom I had a very rare disease and that I was going to need surgery. At 19 days old, I underwent major surgery and fortunely, everything went fine. After the surgery, they told my parents I would need to stay in the hospital for a few months. After about 3 months, I was allowed to go home. Three years later, my family emigrated to the States and all that was left of that life threatening surgery was a distant memory and an unflattering scar across my stomach.
FAST FOWARD 10 YEARS:
When I turned 14, I started high school and I became increasingly aware of my body. I've always seen the scar, but until now, for some reason, I never questioned it. I was looking in the mirror after taking a shower and I started thinking that I didn't even know exactly why I had this ugly scar across my body. I hated it. I have always been chubby and so I thought that scar just made me look like I had a huge roll on me when in reality, I didn't. Anyways, I got dressed and went out to the living room to talk to my mom. Man oh man, if that wasn't the more frustrating conversation ever, then I don't know what is. Basically, she told me that I had a rare and dangerous disease that had to do with my liver. I had surgery, stayed in the hospital and the disease sounded something like this: ek-te-ri-si-ah.
Thanks mom. I am so glad you were on top of things.
I tried to put Google to good use and find out as much as I can from the little information I was given. I found absolutely nothing. I looked for months, I even tried asking my pediatrician and still nothing. I gave up after a while and just thought that if all that is left of that horrible disease is this scar, than I can live with that.
FAST FOWARD 4 YEARS:
When I was 18 years old I got engaged to my fiancée Michael. When we were making plans for our future of course the topic of kids came up. I told him I have a condition called PCOS and I also have a thyroid problem which makes it difficult to have kids. I can still have them, it will just take a little extra work, but that's for another post. Anyways, that conversation got me thinking about how my scar would react to my expanding skin. This thought sparked my interest, again, on my mysterious scar. Hoping that my mom might've left something out since our last conversation, I called her and asked about the disease again. She told me again, what she had told me before. I was disappointed, but I didn't let that stop me from still trying to investigate. This time when I started researching, instead of typing in what my mom thought was the name of the disease, I just searched for rare, childhood liver diseases. I found a couple things, but the one that really sounded like the disease I had (i.e symptoms, rarity, age diagnosed) I tried to find everything I knew about that particular disease. What I found really was crazy. It is honestly a miracle I survived this long without any medication, regular doctor visits, and/or a liver transplant. The condition is called Biliary Atresia (I guess it sounds like ek-te-ri-si-ah). Here is what the American Liver Foundation has to say about Biliary Atresia or BA for short:
Biliary atresia is a disease of the bile ducts that affects only infants. Bile is a digestive liquid that is made in the liver. It travels through the bile ducts to the small intestine, where it helps digest fats.
In biliary atresia, the bile ducts become inflamed and blocked soon after birth. This causes bile to remain in the liver, where it starts to destroy liver cells rapidly and cause cirrhosis, or scarring of the liver.
There is no cure for BA, the only treatment is a surgery that leaves a large scar on your stomach called a Kasai Procedure. A Kasai procedure replaces the bile ducts outside the liver with the length of the baby's own intestines creating a new bile duct, ultimately trying to achieve bile flow from the liver into the intestines. About 80% of the time this surgery is with partially or fully successful. Most people, however, will need a liver transplant by the age of 20, regardless if the Kasai was completed successfully. This disease can never be cured and is something you will always have to deal with. After reading all the information on this disease, I started to feel so silly for worrying about the scar. I'm sure that people with BA, that's the last thing on there mind. I mean, a transplant by 20? That's insane. I am 19 and I have not once been to a doctors for any follow up. Don't get me wrong, I've met people through BA support groups and BA awareness groups who have also not had any complications since their Kasai and stopped medications the same time I did, but they get regular check ups with GI doctors. How could my mother not know this? How could she be so negligent about something so serious? Whenever I tell someone who has BA or has a baby who has BA they are immediately concerned that I don't have regular check ups. After finding out so much about BA, I think it's time for an appointment with a doctor to confirm my suspicions of actually having BA. And if I don't have BA, maybe they will be able to tell me what I did have and why was a Kasai performed on me. Until then, I'm just happy I am alive. Happy Blogging!
Me when I was 10! See the scar?
P.S my kasai scar is different from most peoples scars. I have met a few other people who's scar is like mine and they don't know why it is either. I guess it depends on the surgeon.
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