Libby, hypogammaglobulemia, asthma

Now I'll tell you about some of my medical problems, OK? To begin with, I've been in the hospital about a billion times, where I receive IVs (meaning liquid and medicine in my veins). I must say that I hate that part of my life, particularly when I have to go home and take the IV with me, right in my arm (to continue receiving antibiotics when my body needs them). You see, I have a medical problem called hypogammaglobulemia, a type of immune deficiency. What that huge word means is that I have no antibodies (fighter cells) to protect me from a bacterial germ called pneumococcus, that is, pardon me, the snotty nose germ that sometimes visits you when you have a cold or the flu. Since I don't have any fighters, I get infections all the time. Pretty soon I'll be starting IVIG, letters that stand for intravenous gammaglobulin (antibodies to help fight infection) I will get this medicine every month to help me stay healthy. Even though the infusion takes a few hours, I think it will be worth it because with it, I should feel a lot better and not get so sick all the time. It feels to me like I have a never going away sinus infection. In addition to this odd immune condition, I also have asthma and trouble with my heart.

All of this is pretty scary. Sometimes I worry that I will get really sick and never get better. When I first found out about why I have skippy heart beats, I cried a lot. It just seemed like so much to put up with. I get frustrated when I'm sick, too, and sometimes I feel guilty. I think I must be a disruption to everyone, even though my mom tells me that I'm not. I even ask myself, 'why me, why me'? My asthma is not fun, but it's not as scary as my heart condition. An asthma attack feels to me like my lungs have been replaced with raisins...ouch! I hate the nebulizer I use to control the asthma, because it shoots out this medicine that makes me feel shaky. When I cough, my mommy says I sound like a seal. And that's about it with my asthma.

What keeps me going is my faith, my family, and my strong will. I live with my mom and my sister Sarah, and thank God they are always there for me. Sarah is 14 months older than I am (that makes her 11), and she worries about me when I'm sick. My mom makes sure I'm always taken care of, and when I'm in the hospital she stays with me during the night. One of the worst things about having my medical problems is that I am sick a lot!!! Believe me, I'd much rather be swimming with Sarah at the YMCA, one of our favorite things to do together.

School is rough for me...though I hardly get to go there anymore. Whenever I've been absent for ten days, I get home instruction (a special teacher comes to my house). This bums me out because when I'm home, I can't see my friends. And I hate missing out on things...I actually love school,even though sometimes bad things happen. For instance, in one of my classes the teacher yelled at me when I interrupted him to tell him I was having heart problems. He yelled at me so hard and told me in front of the class I wasn't really sick. I ran down to the office crying and told the nurse who told the principal who called my mom. She came right away and talked to the principal and the teacher. He apologized to me, but the damage was already done, and I really didn't want to go to school too much after that. My class-mates would tell me that I wasn't really sick, too, and they'd call me 'puppy dog eyes'. I felt so alone, and so bad. I just hated being treated differently! If I were in charge of the school, I would make sure everyone was treated equally. Luckily I'm fairly smart, so I have been able to catch up with all the work,

I have two friends, Jessica and Melissa. Jessica is really nice. She has diabetes, so we totally understand each other. When I needed to begin home instruction, she even cried!!! Melissa is my other friend. We've known each other for a long time, since Kindergarten. I always tell my friends if I'm really sick, because talking with them makes me feel a little bit better. I hope that I'm able to see them a lot next year, and I hope they'll be able to keep me up to date about what's happening at school.

2004****************************************************************************
Well, guess what. I wrote my story in March of last year, and have got some 2004 news for you that I hope you like as much as I do. I started taking a type of immune globulin called IVIG...the infusions take between four and five hours, but they are certainly worth it because I feel great! I am dancing (performing modern ballet) and tumbling. No wonder I love my life right now!

2006
It's been a long time since I've written, and I guess I've been pretty good. I am sick right now. though, but what's new about that?. I have to tell you I wrote a book and had it published! It is called "Life According to Libby". It is about my life and dealing with hypogammaglobulinemia and the stuff that has happened in my life because of it. I am still getting IVIG sometimes which helps me.

Other news is we have a dog Emma. Emma is an angel to all of us. We got her when she was 5 weeks old when my sister Sarah had to have heart surgery. She had supraventricular tachycardia and that was BAD. The docs did a heart catheterization and ablation. Luckily, it saved her life. Sarah's doctors said she is lucky because she could have died from that. I love her bunches.

2008
Hi, world...now I'm fifteen, and about to start my Junior year in high school How time does fly! I'm happy to say that I'm doing very well in school and haven't even missed a tremendous amount of it. I take all honors classes and next year will be taking AP classes for college credit. Yes, its very exciting :). I plan on going to college for Journalism. My dream is to go to Ohio University but we'll see what the future brings. In school I am the treasurer of Student Council and I also do a lot of volunteer work inside and outside of school. I am also taking pre-professional ballet classes at the University of Akron! I love it there, they have a fabulous dance program. Well moving on to my health. I haven't been nearly as sick as when I was younger, except for my thyroid gland. The thyroid stimulating hormone (TSH) has been going up and down to the EXTREMES making me either sooo tired or hyper! Ah, it's frustrating but I'm on medicine to help regulate the ups and downs.