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Just did an course a couple of months ago. Didnt give me any real side-effects and worked. Have taken it many times over the years and its been a good drug for me.
In short, Yes. I have seen many people work their butts off, and take a sudden nosedive. It SUCKS. 2 years ago I was training for a sprint triathalon, running 10K 5x a week, swimming a mile every day and biking 15-20 miles 3-4 days a week. Now I have to use oxygen to walk on a treadmill...
I'm sorry, but you couldnt pay be enough to be in a room with another CF adult without a mask on and a bottle of hand sanitizer nearby. I grew up with other CFers around, before the strict isolation policies, but my parents and doctor strongly urged me to stay away from the other kids with CF...
When I was a child in the 1970's my family used to go on 2-3 day camping trips down a river in Michigan. The conditions were filthy, the food totally inadequate and filled with bugs, we always tipped the canoes and got soaked, my only meds we could bring were enzymes, no nebulizer since there...
Sam, I eat a very high fiber diet. Whenever I get "loose" either due to meds, illness, or travel to foriegn country, I eat a couple of bananas and lots of rice each day. Works ten times better than constant doses of anti-diarreah pills. Of course, everyone is different, but it might be worth...
Cam, I'm struggling with that right now too. Two years ago I was training for a sprint triathalon, now walking up a flight of stairs gets me SOB. The more I tried to work out, the worse my reactive asthma became. I havent been able to work out in months because of it. I did some research...
welshcwitch. Similar boat here. I grew up with cats, dogs, chickens, goats, etc. Spent tons of time in lakes, ponds, and hottubs. I STILL garden extensively. THe things my parents and I were rabid about while I was a child- NO contact with other CF people. Avoid hospitals like the...
As a CFer who used to be similar to your boyfriend, I can empathize. I am NOT suggesting this, but what helped me really open up to my boyfriend (and what helped him understand where I was coming from!) was he contracted Lymes disease and became paralyzed for a week in the hospital. IV meds...
Definitely bedtime. Kids tucked in safely for the night, chores all done, curled up on a heated mattress pad with a cozy comforter reading a great book with my sweetie right next to me. A snack of course, and some warm almond milk. So simple, but it's great. I can finally relax. I'm a big...
I'm at the same place you are latebloomer. They cant get PICC lines in me anymore, so next time its a port. I have really tough veins to begin with :( Only actually had 5-6 PICC total. Rest of damage all done from peripheral IV's, of which I've had hundreds.
ChelseaLu, no matter what the diagnosis, your son is already ahead of the game with a knowledegable mom who is going to bat for him. Good for you! I hope you get this resolved quickly so your son can get to specialists. Kids who get really pro-active care tend to do very well. Blessings.
When you have a nebulizer on every floor of the house.......a salt shaker in your nightstand.......your medicine "cabinet" is an entire closet.......and my personal favorite...every bathroom has a main plunger AND a backup!!!!!!!!!
The most important thing I've learned over 40 years is: Dont be afraid to ask for help. This includes letting people know when things arent going so well and let people help you out if it will improve the quality of your life. Of course, reciprocate when you can! Psych counciling can also be...
Gammaw, well said! Naydib, I'm not really a religious person, but at some point, you just gotta have some faith that if you do your best and try to make smart choices, it will be OK. Have a family and enjoy them!!!!!!!!!!!!!!!!!!
Gammaw, I hear what you're saying about the carriers and symptoms!!!!! My mom is prone to asthma and bronchitits and has had GI problems off and on for years. My dad has health issues too. You can trace this stuff back generations........ My brother is healthy as a horse, but my sister...
Hi. I always had a runny nose as a kid, as did many others with CF that I knew. In my case, it progressed into at least 7 sinus surgeries (windows, polyps removed many times). Maybe its time to try a new approach to his allergies? When you say congestion, do you mean sinus, chest, or both?
My vitamin levels are well within the normal range. The only one I had issue with being a little low was vitamin D. I started using a vitamin D lamp during the winter, getting some sun during the summer, and making sure we vacationed someplace warm during the winter and now I have stabilized...
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