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Cystic Fibrosis
A couple days ago the joint in my hand above my index finger was swollen and very painful.  Thank goodness is has subsided a bit.  I also have been having more pain in my knees, and my right hip feels as though I am 89, not 39!  I plan to talk to my doc about it the next time I go ...

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1341 Views ● 3 Comments
Relationships
Ashley has come down with a cold. It’s just a cold, right? Nothing to worry about, right? I mean, we both had our flu shots, and our H1N1 shots.(1) Hell, we even got H2D2 shots!(2) So it’s just a cold. Except. It’s the first cold she’s had since her double-...

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questions
909 Views ● 4 Comments
Cystic Fibrosis
Hello CFer's in the tristate area. I think it would be great if we could get a group together. Anybody from NY,NJ,CT want to give it a whirl?

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questions
1016 Views ● 2 Comments
Music
I just wanted to write about how inspirational Alice Martineua is. She released an album a few years ago called Daydreams. She was an amazing singer, but later lost her battle with CF. I want to reccomend her music to anyone who hasn't heard it because she great :)

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questions
849 Views ● 3 Comments
Cystic Fibrosis
Luckily, Manessah was born 5 weeks early. Due to meconium ileus, her bowels started perforating in utero. At 2 days old she had surgery to remove part of her bowels, ending in an ostomy bag for 6 weeks. At 6 weeks, It was determined that a Nissen stomach wrap was the best solution for her reflux....

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questions
914 Views ● 2 Comments
Health
Eleanor has a doctor's visit soon.  She has been battling a stuffy nose for a while and her PC doc put her on Rondec which really didn't help.  I keep thinking it is a weather related problem since it has been sooo cold here in Florida.  She is coughing more than normal bec...

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questions
914 Views ● 6 Comments
Cystic Fibrosis
As of today my daughter hayleigh will start ivs. Her functions have fallen to 65. Two months ago the were high 90's. MRSA and pseudomonas gotta love these bugs!!! I am happy we had a port placed last years so she will never go through pic line pain ever again. I struggle to know if it will be...

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questions
967 Views ● 1 Comments
Cystic Fibrosis
Katy  is about to turn 16 and was diagnosed less than a year ago. What!! I hear you scream, how was that missed, etc. We'll get there, just bear with me. How did we find out? Well my step-daughter (Sara) had a little girl (Naomi) in 2005 who was finally diagnosed as having CF...

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questions
3631 Views ● 11 Comments
Hospital Stays
So today is the day that we should be in Kona, Hawaii for my son Conner's Make a Wish trip. But guess where we are instead? Enjoying the first (of many i'm sure) admit of the new year. yeah, happy new year! He's been on IV's 2 weeks now and for the last 5 days has been spiking 104...

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questions
980 Views ● 7 Comments
Tips and Tricks
  I have been doing percussive CPT my whole life. I find it far superior to other forms of therapy, however I have some major issues though on what the “professionals” tell you about CPT. So you’re at the hospital and in comes your therapist and asks you what you wh...

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  HOLY SMOKES everyone! We cannot tell you how thrilled we are by today’s response. Right now we are at 280 members...and rapidly counting.  We watched intently as each and every new member added to the count. We are so floored that people are actually adding information to th...

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