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It seems there are two distinct opinions of CF doctors as far as PICC line/port antibiotic treatment. Camp 1: Treat every CF patient with IV antibiotics every 6 months (or every year) whether they have low PFTs or not. Camp 2: Treat with IV antibiotics when CF patient has a substantial PFT drop...

Well, I have lived in Alaska for the last 11 years and this year my health has declined a lot. We have decided to move to Arizona, but I keep hearing negative things about lung health and Arizona and now am questioning it. Here were my arguments in favor of Arizona: 1. The cold in Alaska tends...

I was on the drug study for VX 770 for those homozygous DF508 and they ended the drug study early, because it was not working for this mutation by itself. Did that information ever get released?

I was on the drug study for VX 770 for those homozygous DF508 and they ended the drug study early, because it was not working for this mutation by itself. Did that information ever get released?

First of all, thank you for all of your responses. I just heard that the hospital approved my request for financial assistance, which lowered my bill to $10,000 instead of $50,000. However, that stills leaves a $500/mon payment and that doesn't include my other medical costs (prescrips, labs...

Well, my insurance company changed our preferred provider to a different hospital. My CF doctor, however, wouldn't treat me at the other hospital. Being that my lung function was down from (May) 80% to (Oct) 36%, I felt it was crucial to be treated by my doctor whoknows me and my history andis...

Hi Rebecca, First of all, it's been three weeks since my port has been placed and even when I bump it, there's no pain. YEAH! As far as right after the surgery, I took one tylenol 3 and then just regular tylenol (since tylenol 3 makes me nauseous). I think I took tylenol for almost two weeks. My...

Hi Rebecca, First of all, it's been three weeks since my port has been placed and even when I bump it, there's no pain. YEAH! As far as right after the surgery, I took one tylenol 3 and then just regular tylenol (since tylenol 3 makes me nauseous). I think I took tylenol for almost two weeks. My...

I always ask the nurses what they are giving me (except when I'm sleeping) and have had instances where they are wrong. One frequent one is on insulin doses (mine tend to vary when I am sick). Luckily, I give myself my own insulin and tell them to call the doctor if they disagree with what I am...

I always ask the nurses what they are giving me (except when I'm sleeping) and have had instances where they are wrong. One frequent one is on insulin doses (mine tend to vary when I am sick). Luckily, I give myself my own insulin and tell them to call the doctor if they disagree with what I am...

Thanks for the replies, guys! Each day I find the area a little less sensitive. I do find myself still fascinated with touching it and looking at it. The rest of my family is over it already. LOL <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thanks for the replies, guys! Each day I find the area a little less sensitive. I do find myself still fascinated with touching it and looking at it. The rest of my family is over it already. LOL <img src="i/expressions/face-icon-small-smile.gif" border="0">

So, I got my port put in on Jan 1. It hurt for two weeks to move (stretch, turn, just exist), and that pain has ended. Now though, it still hurts to touch or press on port. I keep accidentally hitting it. It looks like it still is bruised on port site. Where the catheter is at doesn't hurt...

So, I got my port put in on Jan 1. It hurt for two weeks to move (stretch, turn, just exist), and that pain has ended. Now though, it still hurts to touch or press on port. I keep accidentally hitting it. It looks like it still is bruised on port site. Where the catheter is at doesn't hurt...

We are considering moving to Phoenix, AZ to be closer to my brother and his wife for support. Can anyone tell me anything about the CF center(s) and CF doctors in Phoenix? Do they listen to what you say? Are they up to date on the latest treatments, participate in drug studies? Are they...

We are considering moving to Phoenix, AZ to be closer to my brother and his wife for support. Can anyone tell me anything about the CF center(s) and CF doctors in Phoenix? Do they listen to what you say? Are they up to date on the latest treatments, participate in drug studies? Are they...

I accidentally left the box of saline syringes in the car overnight (for use with my port and iv medications). They froze. Once they thaw, can they be used or are they ruined?

I accidentally left the box of saline syringes in the car overnight (for use with my port and iv medications). They froze. Once they thaw, can they be used or are they ruined?

Oh yeah. Once I get home I will try to post pics, too. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Oh yeah. Once I get home I will try to post pics, too. <img src="i/expressions/face-icon-small-smile.gif" border="0">