Search results

wow..........I'd had collapsed lungs and several cases of pneumonia and bronchitis before I even turned 1. Pebbles8- Orkambi is not for everyone. A significant portion of the ddf508 population has a definite negative reaction to it which reduces lung function. When I reported my...

Gammaw, the ones I use DO melt if you boil them, but not if you run them through the dishwasher or run them through a baby bottle sterilizer. I havent gotten "CF" sick I think mainly 1) luck, 2) I avoid hospitals like the plague and refuse to be an in-patient, but when I 'm there for tests I...

Actually Gammaw, I havent gotten a CF infection for over 10 years, and I dont culture much of anything, so I must be doing something right with regard to germ management. By "infection" in my previous post, I mean a simple cold. Which I pick up several times a year because I have 2 kids who...

The only meds I mix are hypertonic and albuterol or mucomyst and albuterol. The nebbie cup get run through the dishwasher after every use. I usually have 4-5 going at one time, and I throw them out after about 6 weeks OR if I get an infection. I throw those out and start anew once I feel I...

Hi there. We adopted two daughters, the first via international adoption where she was almost a year when she came home and was sleeping through the night, the second via domestic adoption where she was 10 days old. Getting enough sleep to maintain my health WAS an issue for #2. It was very...

This is a little bit different than what you were asking, but still relevant I think. I cultured PA when I was a child many, many times. Had countless rounds of oral and IV antibiotics. Did not get rid of it. Went in for experimental 6 week hyperalimentation treatment when I was 9. Gained...

trghpu1994. My eldest daughter was adopted from an orphanage as well, but at a much younger age. Where was your daughter born, if you dont mind me asking?

ethan- yeah, same here. It used to be that running helped clear my lungs, but when I got to a certain stage in my disease, it actually INCREASED the inflammation and made my lungs a bit worse. BUT, it greatly increased my quality of life overall since I was so much fitter. It's a weird...

Andy- I wish I were in the high 50's.......batting 35-37% now. Loosing roughing a percentage point every month. NOT good. But I keep trying. The kids help keep me going. And the husband. :o

I sort of understand where your doc is coming from. When I was at 59% (and unfit) I started working out A LOT. I built up to running a 5-10K every day PLUS swimming a mile 5X a week and biking 10-15 miles 4X a week. I went to the doc fully expecting a huge rise in FEV1. Guess what, it had...

Yes, I had insomnia while taking Orkambi.

Drinking something supercold or eating generally helps me too. Sometimes albuterol just makes it worse, in my case. Frustrating! Makes you not want to get up and use the bathroom.....totally understand. Good luck with your pregnancy and congrats!!!!!!!

Hey Saint, you doing OK? Ya havent posted yet today and your post from yesterday was a bit concerning.....

I was on Orkambi for 5 weeks. My FEV1 at time of starting was 39%. I have had trouble tolerating some inhaled meds at times due to bronchospasms. I am also taken chemo meds at times to damp down a very active immune system. The initial dose almost ended my up in the hospital. My lungs filled...

CF in texas- I took Orkambi for 5 week, then stopped. 1 week later I tried a single dose. It knocked me on my ass for almost a week. The reaction was even worse than the initial starting, like my body had time to build up antibodies or something. Now, 2 weeks after that single dose I am...

jswans, couldnt agree with you more. I took it for 5 weeks, been off for 3 weeks and I am still trying to get my feet back under me. Have you read the FDA report on the drug? I dont understand why folks arent talking more about the fact the drug only really helps about 40% of people...

To literally answer your question: My lung function. From doctoral student and professional athlete to someone who gets tired from a food shopping. As for the rest, really the only new med that has actually helped me is TOBI. But I am in the minority for that. For the majority, the Vest...

I have 2 kids, so I spend a LOT of my time driving, doing small volunteer projects for their school, tons of laundry and cooking. Dont do so much cleaning because its getting a bit hard and I stay away from chemicals. For fun I have a garden, play croquet and mini golf, take walks with my...

There is a subset of people with ddf508 who have a protein that blocks the effectiveness of Lumacaftor. (published in Science Signaling, Doutor Ricardo Jorge)

Dj this is not body hydration, its lung mucus hydration. If I drink about 12 ounces of super-cool or very very hot liquid in small sips through a straw and get it to the back of my throat and do this for a period of about 5-10 minutes, it causes a huge rush of liquid into my lungs and...