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Attention Cyclists!...Plenty of time to get a team together. Join a team or Find your local chapter and donate. I love the name of my local team. The Sputum Spinners! lol :D http://fightcf.cff.org/site/PageServer?pagename=cy_homepage

Sounds like his team is on top of things. The hearing loss with Amikacin is what I would be worried about. I was on this around the same age and eventually lost ALL of my hearing from long term use of Amikacin. I have Cochlear Implants now. That's just my two cents. Best of Luck. Much love,

Great read! Thank you for sharing! I had my transplant in Pittsburgh. Not UPMC but Children's because I was only 15 at the time. AMAZING group of doctor's there. Stay Strong! It's a long journey but one that is worth every minute. FFX - These are good questions to talk about with your CF social...

ditto. I can sum it up in less than a minute and add that I had a lung transplant and all people say with widened eyes is "oh wow!" I swear some people probably don't even know what a lung transplant is but I really do not care what people think. Good or bad. It is what it is. I live my life...

Therapy CAN be helpful but not for everyone. I've tried talking with several different therapists and all they told me was what I had already heard from my family and close friends. A good therapist is very hard to find. They are out there but rare. I really love my CF social worker. She is not...

Remembering Darren and uplifting his family with my thoughts and prayers (L) Thank you for your generous donation in his memory. Much Love and hugs,

Yes, please let us know where you are. You may get some responses if you do. Sorry to hear this! Out of my 21 years at Children's I had two great Dr.'s leave while I was there. Not everyone is Facebook Friendly but if you are you can search CF groups on FB and ask others if they have...

I'm not well educated in this area but Ratatosk is correct. This will vary by state. I'm post transplant 8 years and I've been receiving SSI and Medicaid. Although, I'm receiving the Medicaid as a dependent of my mom cause she gets it. I have never tried applying for it on my own. I have been...

I do tube feeds about 5 days a week. I can't say it's helped me gained a significant amount. It's only helped me gain a few pounds and MAINTAIN it. Unfortunately, it's been a long struggle with it ever since I got it placed when I was 11. I've switched formula's about 3 or 4 times hoping that...

I haven't had kids yet but just wanted to say Congratulations!! What a blessing! Do you know the sexes yet? My cousin (no CF) just announced the gender of her twins last week. 2 girls! No one expected it. I'm so happy for her and you :) good luck with the rest of your pregnancy. I hope you get...

I think it turns red because if you press it again while its red it will "unlike" it. (Not sure why you would want to unlike a post you liked to begin with) Just like facebook. If you press like it shows you like it but if you press it again it will unlike. Not sure what your point is? lol it...

Interesting... This would be great for CF patients! Not being exposed to germs in waiting rooms, etc.. My insurance company is a pain (aren't they all?!) Doctor only needs to see me every 4-5 months BUT insurance will not deliver my meds unless I see him every 3 months. I wonder if a video...

I'm curious, will this help patients that are DDF508 and post transplant? If it helps with overall defects such as stomach issues and weight gain could we still benefit from it???

Our very own CFer Emily Schaller runs the Rock CF foundation and has some pretty cool "workout" shirts and pants for sale! Along with other novelty items like hats, mugs and water bottles. Check it out http://rockcf.storenvy.com I love this one...

No problem :) Wow, What a great cause for you to be personally connected with! Lets make a difference! Hugs to you...

Very helpful Aboveallislove! I understand it's really hard right now but please don't quit. That's exactly what I wanted to do when I was 15. I went to my parents and asked them. Begged them. Gave them pitiful suffering faces. All of which did not work. They would not let me quit even though I...

I'm so sorry for your loss. It sounds like you two had a special bond. Living 15 years with donated lungs is a great accomplishment! More like a blessing. I'm 8 years out and I hope I can live as long as Billy. Sending positive vibes. Much love & Hugs to you....(L)

Thank you for the best wishes everyone! Thank you to Jeanne & Peter for the beautiful salad bowl they sent us. We feel very loved (L) Hugs to all!

I used liquid oxygen. Comes in a huge tank and you use that to refill your portable tank. My portable tank was small enough to fit in a mini backpack. Wasn't that heavy. I was tiny. Only 75 lbs. Lasted between 5-5.5 hours when I used it on 3 liters. The oxygen only blasted in your nose as you...