Originally posted in Cystic Fibrosis - Adults

<p>Just diagnosed with CF after 3 yrs of constant sinus and pulmonary issues – I would sincerely appreciate any insight&nbsp;or perspective from those diagnosed late in life…on quality of life, impact&nbsp;on your children/husband, ability to continue full-time emplooyment.&nbsp;&nbsp;Many thanks!</p>

Originally posted in Cystic Fibrosis - Adults

<p>Tonight, 8PM EST !! &nbsp;Hope you can make it !!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> &nbsp;joni</p>

Originally posted in Cystic Fibrosis - Adults

<p>Ok this is gonna sound strange but has anyone else gotten mixed up with another&nbsp; patient while admitted to the hoapital</p>

Originally posted in Cystic Fibrosis - Adults

<p>Hi Everyone,</p>
<p>Soabout 4 days ago, I had some painful muscle stabbing in the lung area which is normal for me if Ive been coughing alot during physio sometimes. However, its gotten worse up to the point each time i cough it feels like a enormous knife is slicing up my rib cage in the right side and everytime I breathe it hurts. This has lasted almost 4 days and is making me worried because I am unable to do very good physio at all, sometimes not able to do anything, which is bad for me since i NEVER miss physio and my pfts have been low recently. Should I contact my doctor? Its extremely painful and I cant sleep well at all.</p>
<p>I was wondering if other CFers get stabbing pains at all because I do occasionally – just this time its alot worse! I dont know if its just genetics other than CF because my dad gets alot of back pain, which I get also and he doesnt have CF.</p>
<p>Thanks heaps guys! <img src="i/expressions/face-icon-small-smile.gif" border="0"></p>
<p>Kristi</p>

Originally posted in Cystic Fibrosis - Diagnosis

<BR>My sons newborn screening came back abnormal/positive for CF. So when he was almost 1 month old he had a sweat test done. It came back on one arm at 102 and on the other arm 98. His pulm doc says he has CF. But every medicine, even the enzymes they put him on my sons body is rejecting. He grunts like hes in pain for hours, vomits and has dark green runny poop from the enzymes. When he passes gas he poops. I told them I am not giving him the enzymes anymore. He was born 7 lbs 15 ounces. and without the enzymes he is now 6 weeks old and weighs 11 pounds 9 ounces. I tried the enzymes for about 5 days.. the doctos said up the dosage of the enzymes, it made it worse. change his formula to pregestimil. My son wont drink..I forced 2 ounces down him and he vomitted it right back up and just screamed and cried the whole time the bottle was in his mouth.. So finally I told them enough is enough.. unless they are going to come to my house and be up with him all night and making him drink something he will not. They said they sent away for <NOBR><A id=FALINK_3_0_2 class=FAAdLink href="http://forums.cysticfibrosis.com/messageview.cfm?catid=2964&threadid=613523&enterthread=y#">blood work</A></NOBR> but did not specify what kind.. the doctor agreed with me that something isnt right and has called in a gas doctor to check my son out. our appt is on december 28th. So as of now I am having a very had time accepting that my son has CF. He has not one symptom. Im causing him problems by giving him what the doctors ask me to give him. Without it, he is great. not one single sign of CF. I guess my question is has anyone ever been told their child has it and it not be true. False positive newborn screenings, then a false positive sweat test?? I am hoping the <NOBR><A id=FALINK_2_0_1 class=FAAdLink href="http://forums.cysticfibrosis.com/messageview.cfm?catid=2964&threadid=613523&enterthread=y#">blood test</A></NOBR> can prove to me that their is a mutation there and he has CF. Not that I want&nbsp;him to have it, I just want answers! I want a 100 percent yes he has CF or no he doesnt.&nbsp;Also my son is being seen by Arnold Palmer doctors in Orlando Florida and more then one doctor has told me at their practice that they have never ever seen or heard of the enzymes doing this to a child. But I read the side effects on the packages ( because they have tried more than one brand on my son) and side effects are vomiting and diaherra (spelling?).. So if thats the case the docs have never heard or seen this before and they are a special CF practice, I am hoping my son has something else that they no nothing of that isnt a fatal <NOBR><A id=FALINK_1_0_0 class=FAAdLink href="http://forums.cysticfibrosis.com/messageview.cfm?catid=2964&threadid=613523&enterthread=y#">lung disease</A></NOBR>.

Originally posted in Cystic Fibrosis - Adults

<p>I was reading around on a CFers question somewhere about how many enzymes to take with tube feeds. While I could not answer the question I was reading some of the responses. Apparently there used to be a powder called Viokase but it isn't made anymore or at least sellable in the US because of the same reasoning you can get Ultrase. That being said, one of the guys said he takes his Zenpep and grinds it up in a coffee grinder and adds it to his feed mix. Has anyone ever done thing? I'm assuming it would worse as enzymes need heat (i think) to start working as well as stomach acid? Someone anyone have any idea on this? I'm looking to try it and probably will anyway.</p>