Went to CF clinic today. To be honest, I wasn't sure what to expect. Up until last week, I was pretty sure that I may end up in the hospital. The last few days, despite increasing severity of allergy symptoms, I thought maybe I'd avoid the hospital.
Well...
My lung function went up. It inched up, slightly, so that my total capacity is 52% of what would be expected for my weight and height, while the amount of air I can force out in the first second, the number my clinic is most interested in, was at 44%, also a gain from last time. My weight stayed stable... a good thing and a bad thing. At least I didn't go down, but I really need to put on weight. More working and struggling with that.
Thank you for your prayers. I jump in lung function in the peak of allergy season is a huge blessing.
Showing posts with label weight. Show all posts
Showing posts with label weight. Show all posts
Monday, June 16, 2008
Friday, January 25, 2008
Starting High School - Feeding Tube
My History - Chapter 5
As the summer ended approaching my freshman year of high school, it became more and more obvious that I was incapable of gaining weight through diet alone. Despite eating around 3,000 calories a day, I was stuck at 4'7" and about 72 lbs. The decision was made that I needed a feeding tube. The type of feeding tube that I was to get, a G-tube, is placed in the stomach, then punches through the stomach wall and allows access on the outside. It looked very much like the plug that is on a blow up beach ball... leading me to joking that I was the world's most life-like blowup doll. I had the tube placed the last week of August 1996. The tube allowed me to eat all day, then hook myself up to calorie rich formula at night and have it run into my belly all night long.
A feeding tube is not unusual in CF. While I do not know the exact number of how many of us end up getting one, I do know that girls, especially those who are starting puberty, often need help to gain weight. I was one of those girls. Without the tube my health would have dramatically declined. Lung function, the ability to breathe, is directly related to weight.
The impact on my weight and well being was almost immediate. I rapidly gained weight and I stopped losing lung function, hanging out at 70% of what is normal for several years. While 70% offers some impairment, daily life was hardly a challenge. I handled the plug hanging out of my stomach with humor. Since my peers knew about my CF (a grace and a blessing of growing up in a small town) I rarely was teased, but I also was not brave enough to buy a bikini until I had the tube removed in the Summer of 2001, after I proved that I could maintain my weight on my own.
I am grateful for the health that my tube gave me. It changed me significantly on the outside. Although the site never healed properly, and I was often in pain if I rubbed it wrong, it was worth it. I may need another tube again. My weight has been hard to manage over the last two years or so. I don't know what I think about this now that I am married and bringing a feeding tube in affects both me and my husband. While we both are committed to doing everything to make me healthy, I am not sure if getting a tube will help that much this time. I am trying my hardest to gain weight on my own so that I don't need a tube and have had limited success. We will see where I am at when I go to clinic on Tuesday... prayers are needed.
As the summer ended approaching my freshman year of high school, it became more and more obvious that I was incapable of gaining weight through diet alone. Despite eating around 3,000 calories a day, I was stuck at 4'7" and about 72 lbs. The decision was made that I needed a feeding tube. The type of feeding tube that I was to get, a G-tube, is placed in the stomach, then punches through the stomach wall and allows access on the outside. It looked very much like the plug that is on a blow up beach ball... leading me to joking that I was the world's most life-like blowup doll. I had the tube placed the last week of August 1996. The tube allowed me to eat all day, then hook myself up to calorie rich formula at night and have it run into my belly all night long.
A feeding tube is not unusual in CF. While I do not know the exact number of how many of us end up getting one, I do know that girls, especially those who are starting puberty, often need help to gain weight. I was one of those girls. Without the tube my health would have dramatically declined. Lung function, the ability to breathe, is directly related to weight.
The impact on my weight and well being was almost immediate. I rapidly gained weight and I stopped losing lung function, hanging out at 70% of what is normal for several years. While 70% offers some impairment, daily life was hardly a challenge. I handled the plug hanging out of my stomach with humor. Since my peers knew about my CF (a grace and a blessing of growing up in a small town) I rarely was teased, but I also was not brave enough to buy a bikini until I had the tube removed in the Summer of 2001, after I proved that I could maintain my weight on my own.
I am grateful for the health that my tube gave me. It changed me significantly on the outside. Although the site never healed properly, and I was often in pain if I rubbed it wrong, it was worth it. I may need another tube again. My weight has been hard to manage over the last two years or so. I don't know what I think about this now that I am married and bringing a feeding tube in affects both me and my husband. While we both are committed to doing everything to make me healthy, I am not sure if getting a tube will help that much this time. I am trying my hardest to gain weight on my own so that I don't need a tube and have had limited success. We will see where I am at when I go to clinic on Tuesday... prayers are needed.
Thursday, January 24, 2008
Eight to High School
My History - Chater 4
After I understood what CF meant, my life returned to normal. I stayed healthy and out of the hospital. Besides the occasional bout with a lung infection that required oral antibiotics, I seemed perfectly normal.
I spent nearly every summer playing softball. I was never the best, but I knew the game and often was put in by the coach. I found my niche at pitcher and shortstop. I was fearless with the ball coming at me and would dive on the dirt to catch it. I taught myself to pitch, and prodded the coach into watching me. While I wasn't fast, I was very accurate and had good control over my pitches. Because I had this degree of control I pitched often, even though it seemed sometimes to take an hour for my pitch to get to the plate. I also played basketball for awhile, but I quit in early middle school as the girls began to grow taller, and I, already short, stayed behind. Because of the digestive issues with CF, we often experience delayed puberty and often do not reach our growth potential because of malnutrition. I already come from a short family, so having those issues kept me as one of the smallest and shortest in my grade.
It was also during this time that I started to develop a love for theatre. I always loved attention, so it seemed like a natural step. We have videos of me from when I was a young girl demanding people pay attention to what ever little song I happened to be singing... bowing after a group performance like it was all about me. I did my first play at the community level when I was 11 or 12. "How the Grinch Stole Christmas". It was a mostly kid production, but as being one of the older kids, I took a leadership role and relished being the first on stage each night. I was hooked. Theatre continued to define my life for many years.
I struggled some socially in middle school, as so many do. I've always been a little social awkward, and at an age where that is exacerbated, I felt like I struggled. I had a few close friends, Wes, Julie, and Jessica, and they helped me through. While we are no longer close, I thank them for keeping me from drifting off into social oblivion.
CF wasn't a huge factor in my life for those years. I started doing my first medical trials, taking medication that they were trying for CF care. While people questioned rather a kid of my age should be on trials, my parents and I agreed that we needed to do what we could to improve my health and other CF patients. Life is inherently risky. While on a medical trial, your health is more closely monitored than normal. Also, all the trials that I have been on have been different formulations of proven medications, making it be very little risk to me.
My weight issues, that got me diagnosed in the first place, started to show back up as I went through middle school. While I was always skinny, I started to fall further and further behind for my height. I began pushing in as many calories as possible, snacking through the day, and being very vigilant with my digestive enzymes. Middle school gave me the freedom to carry my pills with me and take them as I needed. Despite being very open about having CF and not hiding it from my peers, a few rumours started to crop up that I was bulimic and taking diet pills when I was really taking my enzymes. I mostly ignored these rumors, but would set people straight on the facts if I knew they were thinking incorrectly. This only lasted a short time though, because soon after the rumors started, a popular boy, a year ahead of me, came up when I was taking my pills at the water fountain. He asked me what they were for and if I was bulimic. I told him the real story, and he told me that he would make sure that the rumors would stop and they did. My peers were always pretty good about handling my CF, but some of my teachers were not. That's a story for another day when I talk about teaching.
I am going to stop right before I enter high school. There is a reason for this that will be revealed in the next chapter.
After I understood what CF meant, my life returned to normal. I stayed healthy and out of the hospital. Besides the occasional bout with a lung infection that required oral antibiotics, I seemed perfectly normal.
I spent nearly every summer playing softball. I was never the best, but I knew the game and often was put in by the coach. I found my niche at pitcher and shortstop. I was fearless with the ball coming at me and would dive on the dirt to catch it. I taught myself to pitch, and prodded the coach into watching me. While I wasn't fast, I was very accurate and had good control over my pitches. Because I had this degree of control I pitched often, even though it seemed sometimes to take an hour for my pitch to get to the plate. I also played basketball for awhile, but I quit in early middle school as the girls began to grow taller, and I, already short, stayed behind. Because of the digestive issues with CF, we often experience delayed puberty and often do not reach our growth potential because of malnutrition. I already come from a short family, so having those issues kept me as one of the smallest and shortest in my grade.
It was also during this time that I started to develop a love for theatre. I always loved attention, so it seemed like a natural step. We have videos of me from when I was a young girl demanding people pay attention to what ever little song I happened to be singing... bowing after a group performance like it was all about me. I did my first play at the community level when I was 11 or 12. "How the Grinch Stole Christmas". It was a mostly kid production, but as being one of the older kids, I took a leadership role and relished being the first on stage each night. I was hooked. Theatre continued to define my life for many years.
I struggled some socially in middle school, as so many do. I've always been a little social awkward, and at an age where that is exacerbated, I felt like I struggled. I had a few close friends, Wes, Julie, and Jessica, and they helped me through. While we are no longer close, I thank them for keeping me from drifting off into social oblivion.
CF wasn't a huge factor in my life for those years. I started doing my first medical trials, taking medication that they were trying for CF care. While people questioned rather a kid of my age should be on trials, my parents and I agreed that we needed to do what we could to improve my health and other CF patients. Life is inherently risky. While on a medical trial, your health is more closely monitored than normal. Also, all the trials that I have been on have been different formulations of proven medications, making it be very little risk to me.
My weight issues, that got me diagnosed in the first place, started to show back up as I went through middle school. While I was always skinny, I started to fall further and further behind for my height. I began pushing in as many calories as possible, snacking through the day, and being very vigilant with my digestive enzymes. Middle school gave me the freedom to carry my pills with me and take them as I needed. Despite being very open about having CF and not hiding it from my peers, a few rumours started to crop up that I was bulimic and taking diet pills when I was really taking my enzymes. I mostly ignored these rumors, but would set people straight on the facts if I knew they were thinking incorrectly. This only lasted a short time though, because soon after the rumors started, a popular boy, a year ahead of me, came up when I was taking my pills at the water fountain. He asked me what they were for and if I was bulimic. I told him the real story, and he told me that he would make sure that the rumors would stop and they did. My peers were always pretty good about handling my CF, but some of my teachers were not. That's a story for another day when I talk about teaching.
I am going to stop right before I enter high school. There is a reason for this that will be revealed in the next chapter.
Monday, January 21, 2008
Thank you!
So I've only been writing on this blog for about a week now. One week since I opened my life to the world and to their prayers....
and in that time....
I've gained 6 lbs. Something I've needed to do forever. I need to gain more, but I'm on my way. And I thank all of you. It doesn't matter if you prayed, if you thought good thoughts, or were just silently here. You all helped.
and in that time....
I've gained 6 lbs. Something I've needed to do forever. I need to gain more, but I'm on my way. And I thank all of you. It doesn't matter if you prayed, if you thought good thoughts, or were just silently here. You all helped.
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