Cystic Fibrosis?
Sunday, August 22nd, 2010 at
1:19 am
bobby p asked:
people who have cf were you in the hospital alot when you younger (like how many times a year and how long)
do any of you have B. cepacia?
i have cf im 15
Tagged with: Cepacia • Cf • People
Filed under: Cystic Fibrosis
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cf is a genetic disease… it means it is inherited. they are in the hospital quite a lot ( a lot is a lot)
at birth the lungs are normal, but they deteriorate and there is not much u can do about it (25percent reach the age of 30).
B. cepacia is one of the bacteria that causes BPOC (together with other predispositions) which is 2 conditions in one (chronic bronhitis and pulmonary emfizema).
my son is 17 with CF and averages 2 times a year in the hospital, then going home with his PICC line for 2-3 more weeks. He does not have B.Cepacia
He has been averaging this many stays since he was 5yrs. old
I’m 32 and have CF.
I was hospitalized for the first time when I was 13 and had one to two hospital stays a year through my teens and early twenties. Each stay typically lasted 5-10 days with a course of IV meds for about a week or more at home.
Once I got a little older (and more responsible about my own care) I started proactively contacting my health care team and arranging for at home I.V. treatment before the infection required hospitalization. In addition I am very conscience of my diet, regularly use a Therapy vest, and maintain a ridged medication schedule. Since making those changes I have been hospitalized only 3 times in 12 years.
At 32 years old I am at 28% (FEV-1) lung volume, have CFRD (cystic fibrosis related diabetes), Osteoporosis, and pulmonary hypertension. I am currently on the waiting list for a bilateral lung transplant.
Now all that was the bad part… Hears the good. Even with CF I’ve had a great life! CF is definitely an encumbrance but I think it’s made me a stronger person and taught me to live for today while you take care of yourself for tomorrow.
Younger people who are just now being diagnosed do have a tough road ahead of them but it’s not a hopeless struggle. It is true that CF is 100% fatal right now but new medications and technologies are being explored every day! I personally know people who are now 10+ years post lung transplant and going strong!
When I was diagnosed (at age 2) my life expectancy was 14-16 years. I’ve lived twice that long and still have a new lease on life post transplant that I am looking forward to. For those born today the estimated life span is somewhere in the early 30’s…. but the situation is improving every day!
hi,
my 12 year old daugher has Cf, she was in hospital quite a lot when she was younger but then i learnt how to do her IV`s at home so she hasnt been in for a while, she does have B.Cepacia which she got 2 years ago but she has IVs through her portacath every 3 months to try keep it at bay,
she also has pseudomonas aswell, shes doing ok and has a line in now as her IVs started again yesterday, shes also on a nebuliser ( tobi) month off month on for the rest of her life.
I help take care of my cousin who is 10, he usually gets pneaumonia 2 times per year (1 month + at a time). When he was young he was in the hospital for almost a year (in n out 3 months in one out). Now he’s much better. He does not have b. cepacia. His PFT’s usually range from 110-118 when he is not sick (when sick 40-60)