I was dx with CF when I was 3 years old and spent a lot of time in a hospital for sick children at the time. I had originally been taken to the hospital to have my tonsels taken out, but the doctors found they couldn't complete the operation (I still have my tonsels--I'm thirty), and then they tested me for CF and that's how I got dx.
I remember the coughing and what I called my "tiger growl". I remember being in an oxygen tent, I remember the smell of the oxygen masks, and the taste and smell of the pasty orange medicine I had to take. I also remember the endless amounts of time laying over people's laps as they pounded on my back to release the mucous. It was a frightening and confusing time, as my father had also just died right before I went into the hospital, and at 3, well I don't think I knew what death meant, he was just gone, and it was all my fault.
My mother told me years later that one day the doctors called her to report that my most recent tests (still age 3) had shown no sign of CF and that they (the doctors) were dumbfounded. My mother told me that she had been praying with her church friends and that God must have healed me. I learned at a pretty young age never to tell anyone that because they either accuse you of lying or label you as crazy.
So I went on with my life, enduring other traumatic incidences within my family like many people do unfortunately, and also constantly going back and forth to the hospital for ear infections, nasel problems, cough, phlem build up, nausea, dizziness, the works. That carried on into my adulthood, doctors always saying--must be bronchitis blah blah blah--take these antibiotics and rest etc etc. I was constantly on antibiotics. Nobody could figure out what was wrong with me. And I never thought to mention that I had been dx with CF when I was 3.
Fast forward to age 27--started having major panic attacks, unbelievable vertigo, and dissociation where I felt out of body and like my being was disintegrating and my organs were shutting down. I literally felt like eyes in a black hole. My ears couldn't handle the smallest of sounds, and my head felt like it was filled with cotton. There were times I felt as though my head might just roll off my neck if I didn't hold it up with my hands. I'm now being treated for post traumatic stress disorder via a psychotherapy called EMDR (Eye Movement Desensitization and Reprocessing), to treat what was a traumatic hospitalization for me as well as the other traumas I endured in my childhood. It is helping, but now I'm worried, because I'm dealing with the hospitalization memories right now and reexperiencing some of physical sensations, smells of the sickness, intense fear, terrible back pain, crushing chest, breathing difficulties etc that were all part of what I went through back then. And I'm worried because after reading some of your posts, I can't help but wonder if I shouldn't be retested for CF.
Do you think it's possible that a person with CF could actually get by on just antibiotics for most of their life? I've spent most of my time ill so I've really gotta wonder here. Perhaps I should just have the testing done even if only for peace of mind? I would greatly appreciate your advice!
What does testing involve? Can my GP perform the test or will I need to be referred to a specialist?
Thank you!
I remember the coughing and what I called my "tiger growl". I remember being in an oxygen tent, I remember the smell of the oxygen masks, and the taste and smell of the pasty orange medicine I had to take. I also remember the endless amounts of time laying over people's laps as they pounded on my back to release the mucous. It was a frightening and confusing time, as my father had also just died right before I went into the hospital, and at 3, well I don't think I knew what death meant, he was just gone, and it was all my fault.
My mother told me years later that one day the doctors called her to report that my most recent tests (still age 3) had shown no sign of CF and that they (the doctors) were dumbfounded. My mother told me that she had been praying with her church friends and that God must have healed me. I learned at a pretty young age never to tell anyone that because they either accuse you of lying or label you as crazy.
So I went on with my life, enduring other traumatic incidences within my family like many people do unfortunately, and also constantly going back and forth to the hospital for ear infections, nasel problems, cough, phlem build up, nausea, dizziness, the works. That carried on into my adulthood, doctors always saying--must be bronchitis blah blah blah--take these antibiotics and rest etc etc. I was constantly on antibiotics. Nobody could figure out what was wrong with me. And I never thought to mention that I had been dx with CF when I was 3.
Fast forward to age 27--started having major panic attacks, unbelievable vertigo, and dissociation where I felt out of body and like my being was disintegrating and my organs were shutting down. I literally felt like eyes in a black hole. My ears couldn't handle the smallest of sounds, and my head felt like it was filled with cotton. There were times I felt as though my head might just roll off my neck if I didn't hold it up with my hands. I'm now being treated for post traumatic stress disorder via a psychotherapy called EMDR (Eye Movement Desensitization and Reprocessing), to treat what was a traumatic hospitalization for me as well as the other traumas I endured in my childhood. It is helping, but now I'm worried, because I'm dealing with the hospitalization memories right now and reexperiencing some of physical sensations, smells of the sickness, intense fear, terrible back pain, crushing chest, breathing difficulties etc that were all part of what I went through back then. And I'm worried because after reading some of your posts, I can't help but wonder if I shouldn't be retested for CF.
Do you think it's possible that a person with CF could actually get by on just antibiotics for most of their life? I've spent most of my time ill so I've really gotta wonder here. Perhaps I should just have the testing done even if only for peace of mind? I would greatly appreciate your advice!
What does testing involve? Can my GP perform the test or will I need to be referred to a specialist?
Thank you!