Hello. I would like to share my view of CF with you. My son was diagnosed at age two, even though I knew something was wrong just after he was born.
I feel that CF is a way of life. My son hates that he is different, and that he cannot spend the nights at his friends house because he has multiple medications.
He always asks me if he is going to die. My response is always the same..."we are all going to die someday."
I use to think that CF was pretty much an "easy" disease to deal with. I mean, I always thought things would be ok. Lately, the disease has taken more of a front running with our lives and is becoming more of a problem. See my son has lost 20% of his PFT value over the last 6 months. He has been in the hospital 3 times this year and is working on number 4.
For the first time, since his diagnose, I am truely scared of what CF is going to do to my baby. I am actually becoming less head strong and confident that we will be ok. I now know that things are not ok. He is on tobi, xopenex, pulmozyme, hypertonic saline, cipro (antibiotics) three times a day, plus his vitamins, plus his vest and tube feedings (which he is relying on more and more as primary nutrition.) He is coughing more and more each day and running low grade fevers almost every day, if not every other day.
I dont want sympathy, because that makes me think that everyone knows what is going to become of him if no cure or solution is found soon.
Thank you for letting me vent, this is my first time on a support group site...I think I really needed this.