I have a 3 year old daughter, Hayley, who has CF. She has been through a lot already at three years old. She had a Nissen Fundoplication (stomach wrap) at 3 months due to severe reflux causing her to aspirate into her lungs. She has been on IV meds already 4 times. She has been hospitalized 5 times already. SHe cultured PA once in July 2006, I inisisted on IV's and she has not cultured it since (but I do realize it could still be there!) She normally cultures Heamophilius Parainfluenza (H-Flu) and sometimes regular staph. When she is not sick, she does really well. We are very agressive with her treatments, vest 3 times per day for 30 minutes. Xopenex three times per day, Pulmozyme once per day, Flovent inhaler, nasonex, zyrtec, vitamax, Creon 5, ect.
My questions is how did all of you do through your childhoods? More and more I see posts from Cfer's that are in their late twenties, thirties and older. This is fantastic, but I am wondering how many of you were adult diagnosis, how many had a rough start young in life but then bounced back and did well for a number of years?
I have just been so depressed lately reading about all the young kids that are on the list for transplants. I just heard recently of a 9year old and a 13 year old. We spend so much time hearing that the median age is 37 for CF patients, but that means that 50 percent of CFers don't make it to age 37. I am very well aware of this and it scares me!
So tell me how you health was through your childhood if you wouldn't mind sharing! Thanks in advance!
My questions is how did all of you do through your childhoods? More and more I see posts from Cfer's that are in their late twenties, thirties and older. This is fantastic, but I am wondering how many of you were adult diagnosis, how many had a rough start young in life but then bounced back and did well for a number of years?
I have just been so depressed lately reading about all the young kids that are on the list for transplants. I just heard recently of a 9year old and a 13 year old. We spend so much time hearing that the median age is 37 for CF patients, but that means that 50 percent of CFers don't make it to age 37. I am very well aware of this and it scares me!
So tell me how you health was through your childhood if you wouldn't mind sharing! Thanks in advance!