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I recall a break down of two numbers as well when I got my sweat test done (at an accredited CF center)....it measured both sodium and chloride...I know they focus more on the chloride value from what I understand, but if there is a huge difference between sodium levels and chloride levels, then...

I'm so sorry....I know you are hurting in ways that no words could ever describe. Keeping you in my thoughts and prayers. Hugs and love, Jenn 40 wCF

I am also a late diagnosis, it it still overwhelms me nearly 8 years later. I totally understand what you mean about family trying to understand but they simply can't, not unless they live with CF themselves. It does get better, juggling CF and life...although there are times when CF demands...

Haven't stopped praying ever since I heard about them....there are so many cysters and fibros having a rough time now. Jenn 40 wCF

Yes, it is due to malabsorbtion issues...especially the fat soluble vitamins, ADEand K. Personally, I take supplements but I also use a tanning bed every week to get some "sun". I just feel so much better as a whole after each session. My joints don't hurt as much and I seem to have more energy...

If the substance is known to cause problems, then it's best to avoid it. The problem with much of our food today is that they have additives, hormones and other things that really aren't great for you. For example, when I look on the label of ice cream, the list of ingredients, many of which I...

I would check out Foundation care, they have all of the CF meds and are excellent. Good luck! Jenn 40 wCF

I also take IV benedryl when on Vanco, and yes it does help with my sleep issues. I agree that IV seems to do a much better job, but it does have a drying effect on the mucous. But because I can't tolerate Vanc unless benedryl is on board, they allow it for that reason. Have you tried...

I would talk to the clinic for sure, especially since you are on blood thinners. If it doesn't stop, then I would just go to the ER.. I hope everything works out, sucks that the bleeding is back so quickly after admission.. Jenn 40 wCF

Yes, I did buy a medigap policy to help with what the original medicare plan doesn't. There are different options out there as far as medicare goes, check out their site medicare.gov to see what is out there. Like I said, I decided to stay with original medicare as I want to ability to go to any...

Oh my! That must have shocked you..not only having a baby with CF but a diagnosis for yourself as well.. I was a late diagnosis as well at 33, kind of incidental after growing CF bugs out and having many symptoms that were overlooked for years. You have come to a great community, any questions...

Maybe it is getting clogged with residue from the meds. I find that I need to flush mine with at least 10cc's, better yet, 20 before and after each IV infusion. If labs are being drawn, it is especially important that it gets flushed with at least 20cc after the draw (10cc before). I use .75's...

Yes it is possible...while most CF'ers are pancreatic insufficient (I think 85% are, I could be a little off with that number though), about 15% of those with CF don't have pancreatic issues and have no problems with their weight or weight gain..I am on the chubby side and have CF, I am mildly...

What gets me is that they haven't done sputum cultures but have done every other test including CT scans. A sputum culture would yield so much information, if she is having many infections, then I would think that they get a culture on her to see what is causing her problems.. I think that is...

I am with albino, see if you can go to a neighboring state, I just feel horrible for you guys...just because a center is CFF accredited doesn't mean amazing care. I know how hard it is to just up and move, it costs money to relocate and if you are on a fixed income, there is very little wiggle...

I am so sorry that your niece is having such difficulty. How frustrating it must be for her and her parents regarding her care. I would hope that at least they did cultures of her sputum to see what is growing and then give the appropriate antibiotics.. Do you know what medications she is taking...

Not what I expected to read when opened this thread up...I was so hoping that Lezly would get her miracle and come out of this. So sad for her family and friends :( RIP Lezly, fly free. Sending prayers of comfort and strength for her family and friends. Jenn 40 wCF

I grow this out (in fact, I have staph pneumonia and achromobacter xylosoxidans, been in the hospital for nearly 3 weeks fighting this, I so sympathize with your husband) I am on several antibiotics to fight it. I pray that something works for your husband soon.. What meds is he on currently? I...

My guess is that the Burkholderia probably was more of a factor than the pseudomonas as far as denial of transplant goes. Not many centers take cepacia patients into their tx program, but there are a few, you might want to look into them ASAP. Currently, I do not know the names of the centers, I...

I was diagnosed at 33, but amazingly, there were doctors who said that I looked too good to be a CF;er and that I should be at death;s door during my diagnosis phase. Doctors said this. I am still shaking my head! But please do go to to a center for diagnosis, there are well over 1500 mutations...