Search results

Genetic results in I have DF508 and Q1330E.. So far we have been able to find little to no information on that.. Anyone have it? anyone know where I can get accurate information on it? Lord I really expected them to find nothing so I am stunned yet we don't know what it means...

For some reason, though my doctor wrote an order for full Ambry genetic testing, my blood was sent to Mayo. At first I thought it was just going there first and that it would then be sent to Ambry. Today I found out it is just staying at Mayo and that they do the same testing as Ambry. I...

I went to my sneaker store today to pick up a few things I needed and when I walked in the owner was so happy to see me, she wanted to tell me about this girl with CF that is in the "Runners World" magazine... She turns to the page and of course it is a full story about Emily and how running...

m

I think I did something to my port, Yesterday I was reaching for a blanket at work and I felt my port pop. We did an x ray at work, I work in a Cath Lab where x rays are available.. The port is in place, but I am swollen around the area, and it is black and blue. It is as sore as it was the day...

I am happy to tell you, you need to change your signature on the bottom of your posts from waiting for double lung transplant to GOT ONE BABY!!!!

I have to say that I don't use the vest anymore, I never, ever coughed anything up with it ever....(I have a big chest to start with) so I have used the acappela. Recently, I started really increasing my exercise.. I am walking/jogging 5 miles a day five days a week.. It took me a long time to...

I know I asked before but I never saw the answer. Where did Ambry's awesome post go? I loved reading that and learning new things?? Thanks for the redirect.

Hey does anyone know where the Ambry link is? I was looking for all the question and answers from Steve... Thanks

I was told that many ppl on here were able to block someone and it is obvious I would like to do the same thing. Can someone please tell me how to block PMs and threads writen but insane people or people I don't want to talk to? Thank you,

I just want to say that I am really missing Mel tonight. I miss Q, Lauren, Courtney, and for some reason little Debbie. I miss so many people, not that I talked to each one of them every day, but just knowing they were here meant a lot to me.

Totally off topic I know but with our hearts being so heavy about Mel, ( who loved and adored my little puppy pictures) I thought it might send some love <a target=_blank class=ftalternatingbarlinklarge...

I am so worried about our Mellie Mel... Did anyone talk to her today to see how she is coming along with getting settled in???

Hey Guys, I found this information out on face book.. Please read and pass information along.... MY heart is sick at the thought of this. <a target=_blank class=ftalternatingbarlinklarge...

Where has she been?? Where is she?

Hey Guys.. I have been having high blood pressure lately, my CF team just put me on a medication to bring it down but more troublesome is my rapid heart rate, At rest it is 130-150's and walking it went up to 172..I was really dizzy when that happen. My blood work was okay, just a little low...

My new center has been running all these tests on me lately and they recently did a fecal test to look at my pancreas ability to secrete enzymes. My number came back at 500 which is totally normal..... I have been on enzymes since dx, in fact that was one of the things that lead me to being dx...

Where did it go?? I can't find it and I wanted an update... Thanks guys

Here is the link for Diane's funeral. I am not sure her family will check on here to see all the love and support, Maybe we could take a minute to sign on and show the family how loved she was.. <a target=_blank class=ftalternatingbarlinklarge...

Okay, So where to begin.. I am not to sure... I recently switched CF centers, probably about six months ago. I love my new CF team they are so great. I could never say enough good things about them. Since moving to SC, I have had a dramatic increase in my 'exacerbations' but like always I get...