<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>robert321</b></i>
hey i don't know much about the ports because i don't have one, but have you concidered the pic line iv or a midline pic iv? they are ivs that go farther up your arm and you can keep them in longer without infection or rejection, they have a tube that goes up your blood vessel to basically next to your heart, i have only had one (the only iv i've ever had) and kept it in for 2 weeks without a problem, i don't have ivs often because my cf has been being controlled without it and the only time i had one is right after i was diagnosed, what is the second reinformation of cf? i've never heard of it myself if you don't mind will you explain it?
hey i saw where you are new here, welcome, i hope you find this forum informational.</end quote></div>
The second reinformation of CF ... where do I start ...
My doctors don't know much about it at the moment. What we do know is that it is very similiar to CF, with one big difference. My cystic fibrosis transmembrane regulator (CFTR) has no problems. As far as they are aware it functions fine, and apparatnly my phlegm isn't that viscous....
I don't have any CF digestive problems, or at least not yet. I do however have reflux disease, which some of my CF friends have. I also have asthm and lung disease. I also have bronchiectasis, which is one of the main factors of CF death. I also have a very weak immune system.
Here's how it all started out..
When I was a few weeks old I developed a cough. i was taken to the doctors but because I was so young they couldn't diagnose anything. At two years old I was diagnosed with ashtma, and it had also developed into lung disease. They didn't know what kind though, and I was tested for CF/TB/etc, multiple times. All came back negative. At 7 I was tested for reflux, which came back negative. This is the time they wanted to take the infected lung away. My grandmother at that time had lung cancer, and it was thought that she was going to die. Because I was so young, I was like "I'm going to go up to heaven with grandma when she goes", blah, blah. My mother decided against the option for me to have the operation. At 11 was told that the infected lung that had bronchiectasis had now spread completely into the other lung, and that i would be dead if I got another serious infection. They also said I had chronic lung disease, and chronic reflux disease.
So now, I have:
asthma
lung disease
reflux disease
bronchiectasis
the second reinformaiton of CF (a lot like the above). This just basically means that I'm a lot like CF people, but have no problems with my genes. I carry CF infections in my lungs, thus cannot mix with them.