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.


Meredith said...

You KNOW prayers will be lifted up in your name on Tuesday from myself and others down in Orlando FL. We of course pray for you daily but will be thinking of you all day Tuesday so be sure to update us all with a PRAISE report! You have been through so much! I pray God gives you and your husband strength daily. Thank you for opening your life and heart to all of us who pray for you daily, God is using you and your disease in a MIGHTY way! You have blessed me and my family in such a short time period, so Thank You again. Blessing, Meredith/Orlando FL

Beverly said...

Thank you for sharing your life story. Your blog is one that I would recommend to my son and daughter-in-law to read. They have shied away a bit from some sites because they're just too depressing at times.