Cystic Fibrosis Forum (EXP)

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    CF and too much Gas

    I don't even worry about it. Sometimes I get gas pain that will double me over, but it usually passes soon. We DO burn a lot of incense! It does more than just mask the bad smell, it almost banishes it. Like Uncle Mick always said, 'If you can't fart in front of a woman, she aint worth...
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    Trying to Follow my Dreams is Getting So Hard

    You're right. If you're able to work, you need to have job satisfaction. I figure you're going to spend about 2/3 of your waking time at work. (When I was working, I spent even more than that.) To go to a job that you hate is a fate worse than death. I was lucky; I was able todo what I loved for...
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    fungal infection - treatment?

    My Transplant Team has me on Prednisone & Voricanizole (Sp?) Prednisone is part of the anti-rejection regimen, Voricanizole is an anti-fungal. I contracted a fungal infection from my donor. Problem with Voricanizole, it's horribly expensive. Fortunately, Pfizer has a program where if you meet...
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    How is your clinic run?

    I guess I don't go to a 'clinic'. Whenever I have CF issues, I see either my CF Pulmonologist or my Transplant doctor. It strikes me as kind of risky to go to a CF clinic with no appointment; especially if you have to sit around for 3-4 hour waiting to be seen. That's an awful lot of time to...
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    In PAIN, hospital NOT helping

    I can honestly say I know how you feel. In all, I've had 7 chest tubes. I have nerve damage from 2 thoracotomy surgeries. These surgeries have caused chronic pain. I think you should go to the ER first. See if they will do something there. I had to do that same thing when I was in ID last...
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    Revision of Soc Security for those of us with Respiratory Disease

    I wonder how this will affect those of us who have had a transplant & are unable to work. VIVA OBAMACARE!
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    Tragedy...

    Oh, man... This really sucks. There is (was) another man in my home town who had CF & a lung transplant. He had his transplant at age 21. Today, at the age of 38, he was killed in a single-vehicle accident. That really sucks to have gone through all he did medically only to be killed in this...
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    Animals and CF

    Give up my dog? No way! My dog is part of why I'm still alive. She was just a puppy when I started getting really sick. I was dying. When we got this Austrailian Cattle Dog puppy, she had so much personality I kept telling myself, 'I can't die now, I gotta see how this dog turns out!' She has...
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    How to deal w extended family without a FAMILY FEUD ???

    It looks like your boyfriend is not leaving you any options. I would simply lay down the law. You must be informed if anyone is sick or else you don't attend, period. End of story. This is not a matter of inconvenience for you, it is a matter of life & death. I know exactly what you're...
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    Blood sugar levels

    I would follow up with endo for sure. Those sound like pretty high readings for fasting. If its that big a concern to you & to his CF doctor its probably a good idea. At the worst, you'll know just where he stands.
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    question on care in hospital

    Good Lord! Reading these horror stories makes me grateful to have been admitted to Good Samaritan Hospital in PHX. whenever I had exacerbations. The only meds I was ever forced to do on my own were enzymes. The respiratory therapy techs were always timely. The only problems I ever had have...
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    Transplant scarring

    I had staples, 69 on the outside & dissolving sutures on the inside. I sure felt it when those staples came out! My scar(s) aren't too bad. I've got 7 scars from chest tubes along with many more small scars from laproscopic surgeries so when I take off my shirt its a mess...
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    Questions for those with G-tubes

    I'd like to ask a dumb question, if I may. When someone with CF has a G-tube, can they still eat or is all food taken in via the G-tube? Thanks, 'Pat'.
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    living with cf

    Yea, I'd take a look at something like that. More importantly, you may be able to educate kids your age. Best of luck with this...
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    looking for asst application for pfizer??? im out of tobi an hypertonic!!!!!!!!

    You should be able to get any help with apps & help filling them out if necessary from the Social Worker at your CF PUlmonologist's office. Hope this helps!
  16. A

    Transplant scarring

    We'll make arrangements so you can check out pics. I hope this helps you. I'll be 8 years post-trans on June 16 '13.
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    Transplant scarring

    Don't worry, it will heal up. If you'd like, I'll send you 'Before & After' pics of my scar. Since I'm a male, it may give you an idea of what the entire scar looks like. From what I understand, a ladie's breasts cover a pretty good part of th scar. I know a woman who had a heart problem...
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    Military

    When I was 19 yrs old I wanted to follow my Dad's bootsteps & be a US Army helicopter pilot. When I tried to join the Army, I had to sign a form under penalty of perjury that I had no physical limitations I was hiding. After the main physical, there was an interview with a doctor. (I believe...
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    Why don't you buy this? (I'm not a sales rep)

    I've always hated the time I've had to waste on a nebulizer. Pre-trans I was spending1-1/2 hrs. twice a day on a nebulizer. I was pretty disappointed to find out that post-trans I STILL spend around 30 min. a day on the neb. I guesss that's just what we have to do.
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    Medical bills...

    Oh yea, don't get me wrong; there is way more help out there for 'us' then there used to be. I've been dealing with this crap since I was 18 yrs. old. That's 30 freakin' years! I thank God daily for my doctors, the nurses who have made my life so much better, etc. And, I don't begrudge them a...
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