Search results

Hey another Colleen... I hardly ever meet anyone else named Colleen; its uncommon where I live. I go by Coll though. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm not sure why that posted twice.. oh well

I definitely do. Mine were very low about 2 months ago, and while I wasn't exactly feeling great, I was still up and around. I didn't really feel like my numbers reflected the actual level of "life function" I had. Sometimes, I also notice that from Trial to Trial (as in, number of 'blows' you...

I also sometimes leave salt on my pillow. Usually it's harmless, just part of having CF! Sometimes though, night sweats can be a sign of infection, so if your son has been feeling more congested lately, or tired, or other signs of illness, you may want to give the doctor a call. Again though...

Amy, I've done Home IVs many times. I go to the hospital briefly (a few night max.) to have a PICC put in. Then I go home and my home IV nurse comes and brings all the supplies. My mom and I handle all the infusions by ourselves- it's really very simple once you get the hang of it. I've had the...

Amy, I've done Home IVs many times. I go to the hospital briefly (a few night max.) to have a PICC put in. Then I go home and my home IV nurse comes and brings all the supplies. My mom and I handle all the infusions by ourselves- it's really very simple once you get the hang of it. I've had the...

Amy, Have they tried any other meds besides Colistin and Cipro? Such as Tobi, or have they mentioned IV medication as an option? If you haven't done IVs before, it can seem like a scary thing to do, but they do work magic sometimes. Do you know what the Pseudomas is coming back sensitive to?

Amy, Have they tried any other meds besides Colistin and Cipro? Such as Tobi, or have they mentioned IV medication as an option? If you haven't done IVs before, it can seem like a scary thing to do, but they do work magic sometimes. Do you know what the Pseudomas is coming back sensitive to?

Hi Jenni, I just wanted to say, if your daughter is 5 she may be able to do PFTs, depending on how mature she is. I think I started doing them when I was around 4 or 5. Basically, they involve taking deep breaths and exhaling as fast as you can, and some other breathing exercises. Even if she...

<blockquote>Quote<br><hr>18 yr old female w/cf xxxx <hr></blockquote> Actually, since the girl who posted appears to have CF, I'm pretty sure that my percentages are correct. Because she has CF, she will inevitably contribute a CF gene. So no matter what her child would be a carrier, and if her...

If you have CF, you will definitely have two CF genes. I'm guessing your sister got tested to see if she was a carrier- which is when someone has one 'normal' gene and one mutated 'CF' gene. So if you have CF, the chances of you having it are unfortunately 100%. 1 in 20 people in America carry...

When I was younger, before many of the current CFF regulations came into being, we were friends with several CF families. When I cultured pseudomonas, some of them became more distant. It really is a personal decision for every family to make how they choose to live their lives. My mom and I...

Happy Birthday Dave! I think my opinion on this has been made clear (that the decision is such a personal one that in the end your own feelings on the topic are all that matters) in the several other threads started about this. I have to say though: <blockquote>Quote<br><hr>No one is immune to...

You're welcome Diane. I couldn't find it in any bookstore, and my mom and I had to order it online, so that may be your best bet

Another CF book I'd highly recommend is "Give Me One Wish" by Jacquie Gordon. It's about her daughter, Chris who had CF and died in the early 1980s. It is very well done, doesn't get overly sappy, and I just loved it. I've actually read it and reread it several times. Happy Reading!

I went through a phase of getting severe joint pain at night, especially when I was going to bed. It used to sometimes wake me up in the middle of the night, and I couldn't sleep. It was worst in my hips and knees. I found keeping very warm helped, and I've pretty much stopped having it. The...

I'm assuming that the tests your daughter has as a newborn was through one of those new laws states have enacted. If so, chances are it only tested for the 25 or so most common mutations (otherwise, I'd imagine the tests would be extremely expensive for the state). Which means, that if your...

I lived in New York City when I was younger, relocated to New Jersey a few years ago. I still consider myself a city girl though- I'm in there all the time <img src="i/expressions/face-icon-small-smile.gif" border="0">

Maria, I've had dreams like that too LOL. I also have a G-Tube, but I'm a little older, and don't move much at night (though I have rolled over onto it and blocked the flow a few times). But I can imagine how worrisome and anonying it is to worry about a toddler getting tangled up in it. Maybe...

This isn't really a total solution, and may sound kind of dumb, but do you have a rec department where you live? If so, you could coach soccer for little kids like first graders or something. That way, it doesn't really matter if you're 'good' at sports- the kids won't be either <img...