Recent content by sueharris269

My mom, who is now 80, was diagnosed with CF at age 75. She lives in CT but sees a very good pulmonologist, a Dr. Behar in Westchester County, NY. She is pancreatic sufficient. She had been treated as if she had asthma her whole life until my son was born and diagnosed with CF ddF508. He is now...

Hi welshwitch! I just "spoke" to you about your recent incident at a wedding. I recommended the book SOSFor Emotions. Well, this 80 year old lady, is my mom! So you keep on "loving life and living every day to its fullest" because anything is possible!

I so totally get this! My son has CF and spends huge amounts of energy trying to hide it. As he was growing up, we as a family didn't discuss his CF very often, but family and extended family all knew about it. Me, as mom, did not handle it well; it sits in my throat like a hairball. It can come...

Result of First Hospitalization Sorry to have been away so long, but the 14 day "tune-up" is done! Some ups and some downs but there were some silver linings! His PFTs came up from 58 to 93. Dr would have liked to have kept him for another 4 days but in his words "I shot myself in the foot...

First Hospitalization :) Sorry, I've been away so long. My son's PFTs dropped into the 50's and he was hospitalized w/in 24 hrs for the 14 day "tune-up". Picc line antibiotics 4x per day, breathing and airway clearance treatments 4x a day. The abruptness, length of time, and fear of the unknown...

Not quite thru second day yet and you are correct. He has been under onslaught of IVs, treatments, blood draws, etc. and it is weekend. Did you not want to get out of bed first few days because of toll on body? Does some energy level start coming back as body gets used to so much antibiotic? So...

My 16 yr old goes in today for his first ever "tune-up". None of us know what to expect. We were (he still is) in a state of shock as to the abruptness of it all but his PFTs are done to 58% after being 103 last Nov. What should we expect for the next 14 days?

My 16yr old is going into hospital for he first time ever for a "tune-up". Can anyone let us know what to expect?

I love all these positive responses! So now I need some input ~ my son just got the news this afternoon that he needs to be hospitalized tomorrow for the 14 day Tune-up. His PFTs are done 48% since Nov of last year. I had a feeling this was coming but it still hit as a shock to all of us. Can...

thank you for that honesty! It's very hard and I didn't expect it to happen, which leads to some guilt. But you have given me some hope!

Very true response also! His counselor says he is trying to become independent but CF keeps him somewhat still dependent and it angers him. Right now he is at the point of not speaking to me! Does keep things quiet...

Yes, you are right. It is very uncomfortable. It's interesting that you mentioned hospitalization. His last clinic PFTs were down so he was put on chi pro for 14 days. He has an appt tomorrow to retest. I don't think he is going to do very well because he has been struggling lately. He has never...

My mother has CF, diagnosed at 75, after always having been treated as an asthmatic. She got tested years after my now 16 year old was diagnosed at 1.5 yrs old. My mom is now 80 and the toll is showing more and more but still, she turned 80 this past June!

My son is 16 yrs old and a sophomore in HS. He is trying to find his place and struggles with peer pressure. I need some advice as he is beginning to give in to some bad habits and we are butting heads a lot. Anyone?

Even with a 504 in place, I put together a packet of info for every teacher, nurse (she gets 2 because sometimes nurses rotate schools), and administrator, and PE coaches at the beginning of every year. So many have no idea what CF is, and what (your) child goes thru every day. Don't forget PE...