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  1. J

    Hey, my name is Jake Sperry. I am a 41 yr old CFer living in Durango. Thought I would give you a...

    Hey, my name is Jake Sperry. I am a 41 yr old CFer living in Durango. Thought I would give you a shout out. If your ever in this part of CO, hit me up.
  2. J

    What you want new nurses to know!

    Coconut water mixed with juice and coconut water concentrate, with salt added....much better for you than gatorade, and far more effective...without proper hydration everything goes wrong.
  3. J

    Now that summer is here

    Summer and cf Hey, JakeS here. I have cf, am 41, and summers are very hard on me. The best advice i can offer is make sure your child stays hydrated. Don't use gatorade, as it is not really a good source of electrolytes, instead use coconut water mixed with fruit juice and add salt. I also add...
  4. J

    Welcome Ambry Genetics

    I can't add much, but great post.
  5. J

    International Travel

    Hi my name is Jake, I am 39 w/ cf. I would recommend taking a letter from your cf doc, explaining condition, and meds. Keep it with your meds. This helps with border guards, security etc.
  6. J

    Advice please-girlfriend with CF

    Hi, some great advice so far. I am a 39 yr old w/ cf. I would advise talking to your girlfriend as well. This disease is so different for each and every one of us. Your girlfriend, her doctor, and her family are the only ones that can testify for her. With that said expect that she will deal...
  7. J

    Moving to Florida from the Rockies, Need Advice.

    Hey, i agree with the above post, shands hospital in gainsville is great.
  8. J

    Why do I love Gatorade so much?

    Hey Gammaw, JakeS . Coconut water is expensive. There are a couple things to look for that makes it more affordable. The most obvious is to shop around, and buy in bulk. Between health food & grocery stores i can generally find at least one that has it on sale. Once i find a good deal i buy in...
  9. J

    Dx last wk at 32; any information on disease progression?

    This disease is hard to recommend therapies for because there are so many different mutations. With that said, i think in general things do gey harder as you age. Finding the right therapies through work with cf docs/clinic is key. Also informed trial and error. Ie. Trying therapies, that help...
  10. J

    Why do I love Gatorade so much?

    Hi, my name is JakeS, 38 w/cf. The reason you NEED electrolyte replacement, especially after exercise has everything to do with CF. Gatorade has high amounts of sodium. We lose so much more sodium(and potassium, magnesium, calcium(the other electrolytes)) through sweat, breathing, phlemn, and...
  11. J

    Do you play an instrument?

    Hi, i am Jake S. I play guitar, piano, harmonica, digeradoo, and sing. I agree music is great therapy. I played trumpet when young, and have thought of taking it up again. I find singing really helpful as well. Anyone can sing regardlrss of musival training.
  12. J

    Sleep Issues - Is This Common with CF?

    sleep problrms Hi, i am 38 w/CF. I too experiance sleep problems. The key for me is taking care of the restlesness and pain that keep me from sleeping in the first place. When i was young i would fall asleep in school, but it improved with age. I think 12 hours is too much anyway you look at...
  13. J

    Care outside the clinic

    Hi, my name is JakeS. I am 38, with CF. My recommendation is that you keep going to cf clinic, but only once a year, as long as your lung function, and pancreas levels stay the same. A local pulmonologist should be able to monitor you just fine. I agree with Peter, on all his thoughts. I...
  14. J

    Who are you in a nut shell

    What type of nut are u? Hi, my name is jake s. I am 38, & a sunflower seed Was diagnosed at infancy by mother(worked as charge nurse in cf clinic) Was not diagnosed by doctor until 9 months Pancreatic insufficiant Relativly normal lungs Bad sinuses Extreme osteopenia, related to malabsorption...
  15. J

    Life,School,...,Heck Everything Under the Sun, and CF

    There is no way around it it is hard. What I do is make sure once a month, whether I feel like it or not, the pantry is stocked, meds bought, staple food ingrediants in fridge, and then when I feel good I make a month's worth of food, and then put the separate items, sauces, prepared veggies...
  16. J

    Zero Energy/Reliant of Caffeine

    you are definatly drinking way to much caffeine, and suffering from rebound effects, it sounds like on a daily basis. I too have been through collage, I know the grind, it is tough. My advice is, drink that first cup or two in the morning, but maybe consider switching to tea or mate, so you can...
  17. J

    Smoking Pot/RSO Oil

    What I find critical for managing cf This thread is like reading my life story and having it confirmed. There are three key componants to me managing CF. If I don't have cannabinoids in system I get infections. Viokase, Creon, digestive enzymes, for pancreatic insufficiency, of course. The...
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