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Type: Posts; User: RockyLass

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    Shout Out to the Grandparents Today

    Today is Grandparents Day and wanted to shout out to the Grandparents, that get us through, support and with deepest love for our precious Grandchildren, Gran Daughters, Grand Sons with CF, and even...
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    2,428

    I agree with bbarry. I just wish the...

    I agree with bbarry. I just wish the fostering/adoption process wasn't so expensive or complicated. Bbarry, that is awesome about your baby with CF, you showed strength when you knew there would be a...
  3. What a wonderful blessing for MikeInMT, and hope...

    What a wonderful blessing for MikeInMT, and hope you continue to do very well. I am on FL Mediciad, and ssi aswell. These programs are wonderful and truly are lifesaving to those who really need...
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    Invest in a good AC, keep OUT of the hot...

    Invest in a good AC, keep OUT of the hot weather,- if you go out, take Salt tablets with you and LOTS of salty things like chip, pretzels, salt shaker. Drink plenty Gatorade,G2, water WITH some salt....
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    This is very selfish they ignore you and your CF,...

    This is very selfish they ignore you and your CF, Don't bother to take at least some consideration for your CF or for OTHERS without CF in spreading germs! All you can do is show kindness while at...
  6. Yes, they most definitely do cover all costs for...

    Yes, they most definitely do cover all costs for a transplant. Contact your local state Medicaid or Medicare, alot of those procedures require prior authorizations,medically appropriateness and...
  7. I wish they would come out with infer-red sensor...

    I wish they would come out with infer-red sensor technology soon for diabetic monitoring. It would be awesome not to prick my finger 6-8 times a day. Just like with oxygen sats, the beam is suppose...
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    Medical CF Trash and Danger To Pets

    Hi everyone!

    I thought i'd like call the attention of the dangers of medical trash with regards to our CF equipment and small parts for those who have their pets. My little 1 year old boy doggie...
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    I really hate bleeds, I think it is the most...

    I really hate bleeds, I think it is the most unpleasant thing with CF, it is very scary and I am most scared if it ever happens at an inappropriate place, like out eating somewhere or out some place...
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    Hi! I really love music, and have play some...

    Hi! I really love music, and have play some instruments all my life. A little Piano, recorder, fiddle and recently got back to playing and really trying to learn, instead of just by ear. At my...
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    I just came off ivs after 3 weeks and once I get...

    I just came off ivs after 3 weeks and once I get my butt back to the gym, I hope this doesn't happen to me!! I remember very clearly a few years ago when it did the first time ever. Did my best 15...
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    Do you do hypertonic saline? If so, that leaves a...

    Do you do hypertonic saline? If so, that leaves a magic salty dust hehe! I use regular tap water BOILED, then rinse my needs with soap water and dry them.

    I hope this is the right thing to do. I...
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    Hi justbecauseyoudontseeit, YES, albuterol is...

    Hi justbecauseyoudontseeit,

    YES, albuterol is VERY big cause for insomnia, for awhile I didn't know why, I would just lie there with my eyeballs wide open(VEST) after a treatment, Til I figured...
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    I have a weird sleep cycle to. I need 10 hours or...

    I have a weird sleep cycle to. I need 10 hours or sleep to feel my BEST. I can get by on 9 if I'm feeling good, The average 8 hours is NOT enough and I get tried quickly. When I have an active...
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    I have been wheezing like HEWW HAW donkey after...

    I have been wheezing like HEWW HAW donkey after Cayston! It kicks my PA controlled, but God awful wheezing, I decided to today try to dilute it, will see how that helps.
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    Diluting Cayson?

    Hi,

    So today I decided to dilute my Cayston a little more, because I was having terrible after bronchospasm /wheezing which I think is connect to the Cayston. Using 2 little sodium chloride vials...
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    Hi TonyaH, This definitely sounds like Lequin...

    Hi TonyaH,

    This definitely sounds like Lequin side effects and if I were I would take him off it immediately and talk to your doctor asap. This stuff has damaged peoples body and brains...
  18. Well HIV is obviously a disease, so no, I don't...

    Well HIV is obviously a disease, so no, I don't think so in the relative context. Transplant drugs do lower T-Cells and B counts, but I don't think as dangerously low like in HIV. Anti rejection...
  19. Thread: Surgery

    by RockyLass
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    781

    I am not looking forward to this whens it my...

    I am not looking forward to this whens it my turn. My sinuses are now totally inflamed, and eventually probably need to open up in there!

    Coughing up blood= inflammation= INFECTION. Chronic...
  20. This is a tough drug, and honestly think they...

    This is a tough drug, and honestly think they could give you something else. I will be honest, its HORRIBLE- FOR ME, that is, EVERYONE one responses differently! Its up to you to try. My experience,...
  21. Thread: disibility

    by RockyLass
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    Hi khm, I am just like you, have ok lung...

    Hi khm,

    I am just like you, have ok lung function at %77 but bounces a lot. I started getting disability at around 80% lung function, was even little high, %85! I was running around, trying to...
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    The Cayston system eflow device is made and...

    The Cayston system eflow device is made and assembled in Mexico while the drug is manufactured in Austria.. This machine is really worth $25.00 rather $860!! I try to keep mine nice as possible and...
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    Hi! Cayston is a great drug once you are on...

    Hi! Cayston is a great drug once you are on it,and this is a shame you are having these stupid reactions. If I were you, maybe you could dilute the drug alot more with sodium chloride with .09% ? It...
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    You try searching ebay? $55.00 + $7.00 is alot in...

    You try searching ebay? $55.00 + $7.00 is alot in this economy. This is beyond cheap, but is there anyway you can try glue it or snap it back it to place the gray part? In my opinion the entire...
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    440 I thought I was the only one too til I saw...

    440 I thought I was the only one too til I saw 4hats and now others... can you guys tell me what your PFTS are and how much it drops it when you flare up? Mine dropped 68% in the hospital, but...
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