I want to take a minute and share with everyone my CF story. Many people who know me have heard me talk about CF and don't really know my story. Now they will. CF, or Cystic Fibrosis, has played such a significant part of my life, both past and present. I know that people will probably never fully understand why it is so significant to me, but, after reading this blog, I hope it will give them an idea. I'm breaking it down into a couple different blog entries because I have a lot to say on the subject. It will be my CF story then and now. For this first blog, we'll just start at the beginning.
When I was 7 yrs. Old, I was falsely diagnosed with Cystic Fibrosis (CF). For those of you who aren't familiar with CF, you can find out more about it at www.cff.org/AboutCF. Looking back on that time, it really doesn't surprise me that the doctors could make a mistake like that. I had all the classic symptoms of CF. In fact; my doctor had been administering a sweat chloride test (the only way to test for CF back then) on me for years, which always had a neutral result. I had respiratory problems, which had been previously diagnosed as Asthma. This included difficulty breathing, increased mucous production, and frequent lung infections. Along with the respiratory problems, I looked very malnourished. At 7 yrs. Old, the time of my diagnosis, I weighed a mere 27 lbs. Upon diagnosis, my parents and I were told that I wouldn't live to see my 18th birthday.
Shortly after being diagnosed with CF, I got incredibly sick. This led to my first hospitalization. I had already begun seeing a CF specialist at the University of Utah Medical Center. That is where I was hospitalized for 10 days. My parents both worked and had my brother to take care of at home. They were unable to stay in the hospital with me but visited me every evening. My first night in the hospital, I cried myself to sleep. This was a very scary time for me. I had already been told that I was dying (yes, at 7 yrs. Old I still understood that concept a bit.) And I was in a strange place with strange people who were hurting me with needles, pounding on my back and chest until I was in tears, and forcing me to take pills that constantly made me throw up.
I truly believe that one of the biggest things that helped me through that time in the hospital were the remarkable people who I met. In time, I got to know the nurses, doctors, and respiratory therapists very well. They were all amazing and truly cared about me and the other patients. Aside from the medical professionals, I met two other very special people.
I think anybody with a life threatening chronic illness would agree that it can be a very lonely world. My doctor thought that it would be helpful to introduce me to another child who could relate to what I was going through. Marie, who was an 8 yr. Old girl with CF, and her mom came to visit me in the hospital. She brought me balloons, a stuffed animal, and a card that she had made for me. I feel that my relationship with Marie was so special that it should be discussed further in a future blog all it's own. For now, we'll just say that she was my best friend and I loved her dearly. The other CF patient that I met in the hospital was a 17 yr. Old girl named Karla. Although my days were very busy with various different medical treatments, the rest of my time was spent with her. She knew all the ins and outs of living with CF and life in the hospital. We spent our days in the hospital playroom putting together puzzles, talking, and watching the Air Med helicopters flying to and from the helipad. Karla helped me to cope during one of the most difficult times of my life. Sadly, Karla lost her fight with CF a year later. She will always hold a special place in my life and in my heart.
My health during this hospitalization confused the doctors a bit. I wasn't responding to the treatments, as they would expect a CF patient to. My sputum cultures were clean. My respiratory distress became significantly worse. I was taking breathing treatments every hour and was on such incredibly high doses of steroids that I started to go into heart failure. Being previously diagnosed with Asthma, they attributed most of my struggles to that. They believed that I had both CF and Asthma.
2 years after my diagnosis, my doctor was still concerned with the way I was responding, or not responding I should say, to the medications they were giving me for CF. In researching some history of the patients diagnosed with CF at the University of Utah, they found something out of the ordinary. A little Indian boy had tested positive around the same time as I was. This appeared odd to the doctors because CF is primarily a Caucasian disease. He was retested a short time later with a negative result. This is what made them decide to retest me. What do you know? I had a negative sweat chloride test. There had been an error with their test and I did not in fact have Cystic Fibrosis.
During those 2 years that I believed I had CF, I was brought into a whole different world… the CF world. Not only did I meet some amazing people at the hospital and clinic, I was also invited to CF Camp. CF Camp was a summer camp specifically for CF patients. At camp there were also some amazing counselors and even some of the wonderful healthcare professionals that we got to know in the hospital. CF Camp for many of us was an escape, a place to be around others like us, a place to feel normal. I began attending camp when I was 7 yrs. Old. Although I found out later that I didn't have CF, I continued to attend camp. The generous people that ran the camp decided to continue to invite me since I had already bonded with the other patients. This was such a blessing and I am most grateful for them allowing me to have those experiences. I could write pages and pages about CF Camp. For the sake of this blog entry being too incredibly long, I'll keep it short and sweet. CF Camp was the place where I met and grew to care for some of the kindest, loving, bravest, and most inspirational people to ever come in to my life. It was a somewhere where some of my fondest childhood memories took place. It is a place and time of my life that will forever be engraved in my heart.
When I look back on this time of my life, I have a whole plethora of emotions. While I could be angry with the doctors and hospital for making such a horrible medical error, I instead choose to be grateful. Although I feel so blessed to have found out that I do not in fact have CF, I feel guilty for getting my miracle of being cured in a sense, when so many others did not. I have had so many sad times as I have gotten close to so many people in the CF community, only to have lost them. I would much rather have known them, loved them, and suffered through losing them, than to never have known them at all. In many people's eyes, this would have been a devastating experience to go through. I would not have it any other way. I feel so blessed, for it has made me who I am today.
When I was 7 yrs. Old, I was falsely diagnosed with Cystic Fibrosis (CF). For those of you who aren't familiar with CF, you can find out more about it at www.cff.org/AboutCF. Looking back on that time, it really doesn't surprise me that the doctors could make a mistake like that. I had all the classic symptoms of CF. In fact; my doctor had been administering a sweat chloride test (the only way to test for CF back then) on me for years, which always had a neutral result. I had respiratory problems, which had been previously diagnosed as Asthma. This included difficulty breathing, increased mucous production, and frequent lung infections. Along with the respiratory problems, I looked very malnourished. At 7 yrs. Old, the time of my diagnosis, I weighed a mere 27 lbs. Upon diagnosis, my parents and I were told that I wouldn't live to see my 18th birthday.
Shortly after being diagnosed with CF, I got incredibly sick. This led to my first hospitalization. I had already begun seeing a CF specialist at the University of Utah Medical Center. That is where I was hospitalized for 10 days. My parents both worked and had my brother to take care of at home. They were unable to stay in the hospital with me but visited me every evening. My first night in the hospital, I cried myself to sleep. This was a very scary time for me. I had already been told that I was dying (yes, at 7 yrs. Old I still understood that concept a bit.) And I was in a strange place with strange people who were hurting me with needles, pounding on my back and chest until I was in tears, and forcing me to take pills that constantly made me throw up.
I truly believe that one of the biggest things that helped me through that time in the hospital were the remarkable people who I met. In time, I got to know the nurses, doctors, and respiratory therapists very well. They were all amazing and truly cared about me and the other patients. Aside from the medical professionals, I met two other very special people.
I think anybody with a life threatening chronic illness would agree that it can be a very lonely world. My doctor thought that it would be helpful to introduce me to another child who could relate to what I was going through. Marie, who was an 8 yr. Old girl with CF, and her mom came to visit me in the hospital. She brought me balloons, a stuffed animal, and a card that she had made for me. I feel that my relationship with Marie was so special that it should be discussed further in a future blog all it's own. For now, we'll just say that she was my best friend and I loved her dearly. The other CF patient that I met in the hospital was a 17 yr. Old girl named Karla. Although my days were very busy with various different medical treatments, the rest of my time was spent with her. She knew all the ins and outs of living with CF and life in the hospital. We spent our days in the hospital playroom putting together puzzles, talking, and watching the Air Med helicopters flying to and from the helipad. Karla helped me to cope during one of the most difficult times of my life. Sadly, Karla lost her fight with CF a year later. She will always hold a special place in my life and in my heart.
My health during this hospitalization confused the doctors a bit. I wasn't responding to the treatments, as they would expect a CF patient to. My sputum cultures were clean. My respiratory distress became significantly worse. I was taking breathing treatments every hour and was on such incredibly high doses of steroids that I started to go into heart failure. Being previously diagnosed with Asthma, they attributed most of my struggles to that. They believed that I had both CF and Asthma.
2 years after my diagnosis, my doctor was still concerned with the way I was responding, or not responding I should say, to the medications they were giving me for CF. In researching some history of the patients diagnosed with CF at the University of Utah, they found something out of the ordinary. A little Indian boy had tested positive around the same time as I was. This appeared odd to the doctors because CF is primarily a Caucasian disease. He was retested a short time later with a negative result. This is what made them decide to retest me. What do you know? I had a negative sweat chloride test. There had been an error with their test and I did not in fact have Cystic Fibrosis.
During those 2 years that I believed I had CF, I was brought into a whole different world… the CF world. Not only did I meet some amazing people at the hospital and clinic, I was also invited to CF Camp. CF Camp was a summer camp specifically for CF patients. At camp there were also some amazing counselors and even some of the wonderful healthcare professionals that we got to know in the hospital. CF Camp for many of us was an escape, a place to be around others like us, a place to feel normal. I began attending camp when I was 7 yrs. Old. Although I found out later that I didn't have CF, I continued to attend camp. The generous people that ran the camp decided to continue to invite me since I had already bonded with the other patients. This was such a blessing and I am most grateful for them allowing me to have those experiences. I could write pages and pages about CF Camp. For the sake of this blog entry being too incredibly long, I'll keep it short and sweet. CF Camp was the place where I met and grew to care for some of the kindest, loving, bravest, and most inspirational people to ever come in to my life. It was a somewhere where some of my fondest childhood memories took place. It is a place and time of my life that will forever be engraved in my heart.
When I look back on this time of my life, I have a whole plethora of emotions. While I could be angry with the doctors and hospital for making such a horrible medical error, I instead choose to be grateful. Although I feel so blessed to have found out that I do not in fact have CF, I feel guilty for getting my miracle of being cured in a sense, when so many others did not. I have had so many sad times as I have gotten close to so many people in the CF community, only to have lost them. I would much rather have known them, loved them, and suffered through losing them, than to never have known them at all. In many people's eyes, this would have been a devastating experience to go through. I would not have it any other way. I feel so blessed, for it has made me who I am today.
This is a photo from my first year at CF Camp. It is of me, my dear friend Somer, and my friends Marie and Michelle who have since gotten their angel wings.
Awesome post! I am so glad you are going to start blogging! Can't wait to read the next entries! Love ya!
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