Recent content by JakeS

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.

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.

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...

I can't add much, but great post.

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.

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...

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

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...

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...

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...

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.

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...

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...

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...

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...