Search results

So of course people with cf are put on a high calorie, high protein diet, but today I went to the doctor and the dr did some testing and swears I have celiacs disease, how in the world do you balance a diet for CF, high calorie and high protein diet and then also a diet with no bread, gluten or...

I'm a long way off of having a transplant, my PFTS are 73%, in two years they dropped from 86%. I'm very knowledgeable and I am always asking questions. What qualifications do you have to meet to be a candidate for a lung transplant. and when do they add you to the list, about what PFT level...

I am so sick of this nasty smelling gas, and a lot of it. WHY is it like this. AND I am so sensitive on the subject and my mother in law has a big mouth!! i'm about to scream at her. I've told her I can't help it its apart of my disease but she tells me I smell like a sewer all the time. And...

(VEST)Hi everyone, i am looking for a list of mutations of CF and how they effect the body. I have previously seen one and i cannot remember where i seen it. If someone knows where one is, please send a link. Also, if anyone knows if the new version for double delta F508 of Kalydeco will also...

My mother in law has been with us for a while now, 3 months, and she has noticed some signs that she says is menopausal. I just turned 27 and i previously thought so too. Weight gain (unexplainable) mood swings, hot flashes night sweats. I looked as much as i could and found that some cf...

(NEB) So need some info on kalydeco, the one for F508, last i checked it was in stage two supposed to move to stage three this month some time. I can't find the website i got this info from the last time. Anyone know anything? thanks!!

I am so tired of this whole disease and everything that goes along with it. I'm 27 years old and have felt a deep difference in how i feel and the pain i go through. I'm on medicine for possible sinus infection that can cause diabeties, that i might have fibromyalgia, and i've always known that...

I have had my fair share and everyone elses fair share of IVs in my town. My arms no longer can support a IV, you cannot see any veins in my arms, and i only have one vein in my hand that can be used to drawl blood. my veins cannot hold ivs, they either roll, disappear, blow. Its a very rare...

we are very excited to announce that we got married! Lucas is back home and has been for almost two years where he belongs and is thriving, and i found the love of my life. We had also bought a mobile home which is an older mobile home, turns out it has mold in it. its been making me and my lil...

while attending my new clinic the doctor has been looking for any signs of heart failure, i thought this was strange, is there anyone that has heart failure or signs of it bc of your cf? I am really worried about it because lately my feet have been swelling and my socks been leaving imprints on...

SO i went back to dayton today and Dr O an Dr Harry was really impressed. I gained 4.5 lbs, i am up to 130 i was always 114. My pfts before stay was 65, and my pfts after are now 73, which are still climbing ( i hope lol) I talked to them about me and my fiance maybe trying for one more baby and...

I am so excited to be going home, aep got our electric on from the storms here. thank gosh! Doc Harry was so impressed at how well i bounced back after getting sick and i am truely greatful and i appreciate all the time, effort and hospitality i recieved at this hospital. I truely feel at home...

after being told that i had the G511D gene and after my son was tested and found out that infact was his gene by my old clinic, i had high hopes of qualifying for kalydeco. Today i found out that i do not have G511D, F- something, i was kinda shocked when they told me. I was and am very...

<strong>So when i was a child i was never taught anything about cf, my family lived with my illness as of "Here take this, your sick, don't ask questions" So i am all the time asking on here advice because i wasn't educated when i was little. </strong> <strong>I went to Dayton Childrens and they...

This new medicine has me extremely excited, i might get put on it and i wanted to see who has it and how its working for you!!

so i had previously posted about the last clinic i was at giving me a lot of trouble. Then i posted i started going to the childrens cf clinic in dayton. Let me say amazing!! its near a 2 1/2 hour trip from where i live but worth it. After talking to my dr and deciding that my lungs where full...

i barely cough up any mucus which is a problem bc my lungs have gaining more and more mucus, but when i do couch it up its extremely hard and hurts. Is that bad or good i mean what is it ive never seen that happen before.

WHO has problems with body oil blowouts!? and what do you do about yours? how have you delt with this problem, i need help. Mines recently over the past 2 years and would love some advice on what to do, how to manage it, and how to tell someone you love incase you have an accident at night? i...

We all know coughing can get pretty intense, loud and violent. My coughing once a while ends up giving me back pains. Sooo my question is, what are some ways you guys have found to ease the coughing problem. Medicine or not, i still cough. I wake up my boyfriend, Vaul, when i cuddle with my son...

I already have one son that i had no problem getting pregnant for. And hes about five now, hes been on this kick that he wants a sister and i do want another child. So Me and My boyfriend, Vaul, decided that we are set in life with money, a home big enough, to have another baby. So after talking...