Originally posted in Fibrosis News

Pacific Therapeutics Ltd. is a development stage specialty pharmaceutical company focused on the identification and development of drug candidates to treat diseases of excessive scarring .

Originally posted in Fibrosis News

CF is a serious genetic disorder affecting the lungs and other organs that ultimately leads to an early death.

Originally posted in Cystic Fibrosis News From Medical News Today

Kalydeco has been approved by the Food And Drug Administration (FDA) to treat a vicious type of Cystic Fibrosis (CF). CF is a deadly recessive disease which targets the lungs, but can also harm the liver, pancreas, and intestine. It occurs from the unusual transport of chloride and sodium across the epithelium, causing mucus buildup in the lungs, and thick secretions…

Originally posted in Fibrosis News

The first drug that treats the root cause of cystic fibrosis won approval Tuesday, offering a life-changing treatment for a handful of patients with the deadly illness and broader hope for thousands more patients with the inherited disease.

Originally posted in Fibrosis News

The first drug that treats the root cause of cystic fibrosis won approval Tuesday, offering a life-changing treatment for a handful of patients with the deadly illness and broader hope for thousands more patients with the inherited disease.

Originally posted in Cystic Fibrosis Foundation

Originally posted in Fibrosis News

The Brantley family is seen in this photo. Pictured, back row from left, are Matthew, 21, and Kelli, 19; front row from left, are Stephanie; Kristen, 14; and Todd.

Originally posted in Cystic Fibrosis News From Medical News Today

The lung clearance index (LCI) is a sensitive non-invasive marker of early lung disease in young children with cystic fibrosis (CF), according to a new study from Australian researchers…

Originally posted in Cystic Fibrosis News From Medical News Today

According to a new Australian study published online before he print publication in the American Thoracic Society’s American Journal of Respiratory and Critical Care Medicine, the lung clearance index (LCI) is a sensitive, non-invasive marker of early lung disease in young children with cystic fibrosis (CF)…

Originally posted in Cystic Fibrosis - Adults

<p>So, I got my port put in on Jan 1.&nbsp; It hurt for two weeks to move (stretch, turn, just exist), and that pain has ended.&nbsp; Now though, it still hurts to touch or press on port.&nbsp; I keep accidentally hitting it.&nbsp; It looks like it still is bruised on port site.&nbsp; Where the catheter is at doesn't hurt.&nbsp; Although, you can totally see and feel the tunneled line.&nbsp; It looks like a vein sticking out.&nbsp; I am not complaining about it, just something that's noticeable.&nbsp; Anyway, my question is this:&nbsp; How long is it going to be tender to the touch?&nbsp; Is it because I had IVs after getting it placed that is making it still sore/bruised?&nbsp; Do you ever get to a point where you don't constantly notice it there?&nbsp; Am I just noticing I'm hitting it because it's still sore or does it really stick it out enough that I am actually hitting it a lot?&nbsp; I'm not trying to be a complainer, because I can deal with it, but I am just wondering if it ever gets to be like it's so much part of my body that I don't notice it.&nbsp;</p>

Originally posted in Fibrosis News

Vertex Pharmaceuticals engages in the discovery, development, and commercialization of small molecule drugs for the treatment of serious diseases worldwide.

Originally posted in Fibrosis News

Tony nominee Adam Pascal , Heidi Blickenstaff , Julia Murney , join Rock ‘n Roll Hall of Fame legend Darlene Love and Broadway’s Mary Testa , Julie Halston , Andrew Rannells , and Seth Rudetsky for the Second Annual Broadway Belts! for PFF Benefit on February 27, 2012 at 7:00pm at Birdland Jazz Club .

Originally posted in Cystic Fibrosis - Adults

<p>I am not yet&nbsp;on Insulin-medication, but I would like to know, if you get it via shots or as a pill medication and on what does it depend, that u get pills or the shots?</p>
<p>my highest level was at 211 but doc means, I dont need medication yet.&nbsp; I mean I feel the probs, I have with the sugar, but if he means that I dont need.. hmm… I hope I wont break down with a sugar-shock.</p>
<p>Thank u 4 readin my postings.</p>

Originally posted in Cystic Fibrosis - Diagnosis

This is my first visit to this forum and site. &nbsp;I found it because my pulmonologist called me today and freaked me out, but let's start at the beginning.<div><br></div><div>I was diagnosed with CF via sweat test when I was 26. &nbsp;Throughout my life I'd always been&nbsp;susceptible&nbsp;to sinus and pulmonary issues–chronic sinus infections and&nbsp;bronchitis. &nbsp;My mom said I was very sickly after I was born (I was adopted) and that I'd always had breathing issues–my sinuses were so bad, that I had both nostrils cauterized when I was 9 because of bleeding. &nbsp;When I was 8 or so I remember going to a hospital to get tests to see if I had asthma. &nbsp;Apparently not, because I never had to use an inhaler or anything else as a child.</div><div><br></div><div>It wasn't until I was older that I really started having issues with chronic bronchitus and sinusitus – at least twice a year on the bronch. and 3 or 4 on the sinus. &nbsp;After awhile treatment usually involved heavy hitting antibiotics like levaquin combined with an inhaler and&nbsp;
guaifesenin (back before Muconex). When I graduated college I wound up with pneumonia and the physician who read my chest x-rays said: "wow, you've got some bronchiectisus going on, but it could just be related to the pneumonia." &nbsp;Never had another chest xray after that. &nbsp;My primary care said I likely had RAD, not asthma (really, what's the diff? *shakes head*)</div><div><br></div><div>I lived in Northern NV and one summer we had a particularly horrendous bout of wildfires and the smoke wreaked hell on my breathing and my inhalers that I had for my RAD just weren't keeping pace with my need for them. &nbsp;Finally, my Dr. sent me to a pulmonologist who asked me all these questions I'd never been asked before: how were my stools, did I have salt on my skin after sweating (yes), how often was I coughing (all the time, but worse in the AM and at night), was it ALWAYS productive–even when I wasn't "sick" (yes), did my phlem have a 'sweet' taste (yep)?</div><div><br></div><div>Once he told me his suspicions of CF I kinda brushed it off- I'm NOT the typical symptomatic CF patient: I'm obese, I have high lung capacity and lung function, I have no other illnesses – digestive, heart or otherwise. But he did and allergy panel, a sleep study and the sweat-test (which came back positive) and based on all that, the chest x-rays and the bronchiectisus he saw, felt comfortable diagnosing me with CF-if a &nbsp;mild mutation. &nbsp;I was put on a nasal spray and an albuterol and steroid inhaler&nbsp;regimen.</div><div><br></div><div>For years that's all I did. &nbsp;Until recently. &nbsp;I moved to VA, had a pulmo who said I should just keep doing what I was doing because I seemed fine. &nbsp;Then I quit my job and was without insurance for about 2 years.</div><div><br></div><div>Finally, my job got insurance and I hadn't seen a pulmonologist recently. I told my pcp Dr. my earlier diagnosis, she sent me to a pulmo in the area and he ran a genetic test on me. &nbsp;Turns up positive: mild mutation (I'd have to look at the form to know which one), but yup, I've got CF. &nbsp;So they hand me a nebulizer (oh, wow, I've only ever seen kids use this!) and 3 different solutions for it.</div><div><br></div><div>So I'm doing that and I'm good up until last year around this time. Since then I've felt very…off? &nbsp;Fatigued, short of breath all the time, sputum is one color then another, but never dark brown or green so I don't really worry…etc. &nbsp;So I get a CAT scan, a Chest and a PFT and based on those she gets me a flutter and&nbsp;&nbsp;I have to do my medications 2 times a day (it's an hour long process each time) and she gives me an antibiotic which seems to improve things…slightly.</div><div><br></div><div>So last June , my job gets new insurance, so I wind up with a new Pulmo. &nbsp;This one sees me and is like, "what do you mean you don't have a chest vest and aren't doing your nebulizer 3 times a day instead of 2?" &nbsp;So I get another CT and chest xray and sputum cultures and a billion blood tests. She got me a chest vest (which I HATE–it makes me nauseated and gives me a headache) and I have to do my medications 3 times a day.</div><div><br></div><div>So those tests. &nbsp;When I went to see her a week ago, she was upset that her office hadn't gotten a hold of me to come in sooner because my cultures and blood tests came back with&nbsp;aspergillus (which is the one thing I'm allergic to), staph. &nbsp;So she's pretty positive after looking over ALL my history that I have ABPA (though she wants one more blood test to be 100% positive) and puts me on an antifungal, antibiotic and HUGE doses of steroids–for 8 months. &nbsp;*lays down*</div><div><br></div><div>Got a phone call from her today saying I've got MAI. &nbsp;She was freaking me out because honestly? &nbsp;She sounded a little freaked out. &nbsp;So now I'm scheduled to see an infectious disease specialist on Friday and based on all the things I've seen I'll now be on more drugs for up to 24 months. &nbsp;*tries to remember to breathe*</div><div><br></div><div>So there's my story. &nbsp;Long and likely overly detailed, but….</div><div><br></div><div>Oh, and HI! &nbsp;*waves*</div>

Originally posted in Cystic Fibrosis - Adults

<p>My foundation the Breathe Easy Foundation.. www-breathe-easy.org</p>
<p>Is a finalist to win a autographed guitar signed by the American Idol Judges. If we win we will auction off the guitar and all the proceeds will go directly to providing financial assistance to people with Cystic Fibrosis. We only have 24 hrs left, voting is unlimited… please send this link to anyone you know and help us win !!!</p>
<p><a href="http://mix1051.radio.com/2012/01/26/vote-for-your-favorite-charity-to-get-the-american-idol-autographed-guitar/" rel="nofollow" target="_blank"><span id="lw_1327580021_0" class="yshortcuts">http://mix1051.radio.com/2012/01/26/vote-for-your-favorite-charity-to-get-the-american-idol-autographed-guitar/</span></a></p>

Originally posted in Cystic Fibrosis - Adults

<p style="padding-left: 60px; text-align: justify;">Hey guys. Does anyone has a good advice for me, what I can do!!!</p>
<p style="padding-left: 60px; text-align: justify;">I was diagnosed on allergic reactions against cats. There r 5 classes on testing allergies.</p>
<p style="padding-left: 60px; text-align: justify;">Unfortunately I got class 5 (the worst) at testing me against cats.</p>
<p style="padding-left: 60px; text-align: justify;">Does anyone know a good medication?? Dont want to give my cat away… (</p>
<p style="padding-left: 60px; text-align: justify;">Greez from Austria.</p>

Originally posted in Fibrosis News

The Cystic Fibrosis Foundation has an additional $40,000, after a presentation of a check by the Battle Against Cystic Fibrosis.

Originally posted in Cystic Fibrosis - Adults

<p>Hi guys,</p>
<p>I don't post here too often but I check the site daily and find everything you guys say to be valuable so I just want to explain my situation to who ever will listen..</p>
<p>The last year and a half of my life has been extremely difficult health wise for me. I went from having a mid 70's fev1 senior year of high school and now I'm lucky to see 49% after a round of IV's. I have no clue what's causing my drop in functions. My last dr. appointment about 2 weeks ago my fev1 was down to 34% and I knew it wasn't going to be good before I even did the pft. But the most frustrating part was that I was only off IV's for 2 weeks before my decline. I just can't seem to get any long term relief. Since that last dr. appt. I've been on oral bactrim ds and cipro trying to kick a possible new infection. My compliance with treatments has always been above average doing my vest and nebs religiously and even cpt added 3x a week. I have to admit that I may have an anxiety/depression component also but I am undiagnosed and haven't even mentioned it to my docs. I'm living in constant fear of just one day getting too sick to recover. Right now I only culture PA but have cultured MRSA before. I've been reading about MAC and the symptoms people describe are somewhat similar to mine over the last year but then again it could be that anxiety/depression component and I also don't know if my doc has ever even tested for MAC. I see the doc again tomorrow and I guess he'll tell me if I need IV's again or not. I also had hemoptysis this morning about 3-4 tablespoons despite being on 2 oral abx. Its just so frustrating seeing no benefits after all the hard work I put in…</p>

Originally posted in Cystic Fibrosis - Adults

<p>I was taking colisten and thought it was why I was so dizzy but I have not taking it for a while and am getting dizzy should i start with oxgen levels? if any one can give me a direction or feed back I would be grateful thanks so much</p>

Originally posted in Cystic Fibrosis - Adults

<p>So I had a small pneumothorax in mid December, which was accompanied by subcutaneous ephysema (air bubbles in tissue).</p>
<p>Anyways was just wondering if anyone else has experienced one? I've read some stats on people with CF having them and they really freaked me out. I've also read things like avoiding weight lifting and running which I have been avoiding (just starting running on treadmill again) but I'm afraid of it happening again.</p>
<p>Can you tell me your experience with them?</p>

Originally posted in Cystic Fibrosis - Adults

<p>… I am a 26 years old woman now and got CF since I was 3 months old.</p>
<p>So if anyone wants to know something about me , or needs help or some advice. PLEASE, dont hesitate contactin me. There are so many parents here who need some Info or stuff. Would love to give my knowledge/experience further to other ppl.</p>
<p><a href="mailto:thejokerd@gmx.at">thejokerd@gmx.at</a></p>
<p>greez from Austria, D.!!</p>

Originally posted in Cystic Fibrosis - Adults

<p>Dear CF Community,</p>
<p>My name is Mark and I'm a 27 year old CF patient. &nbsp;I'm working on my Master of Divinity and I'm writing a book about chronic disease and its psychological/emotional effects. &nbsp;I'd like to interview some other CF patients and talk about coming to terms with our disease. &nbsp;Or not coming to terms, whatever the case may be. &nbsp;I'm open to any kind of emotion that is experienced. &nbsp;This is partially me trying to understand how others have dealt with their diseases, and partially just plain curiosity as I have never met anyone else with CF. &nbsp;I would like to interview people on Skype, if possible, because I want to be able to see your face (it helps when I'm describing things later). &nbsp;If you are interested, either post in reply to this or send me a private message. &nbsp;I'd like to interview about 3-5 people who are between 30-60 years old. &nbsp;Thanks so much. &nbsp;Any help would be greatly appreciated.&nbsp;</p>

Originally posted in Cystic Fibrosis - Adults

<p>Since being aware of CFrD and treating with insulin, I've had two pulmonary exacerbations since October 2010 for which I've been treated with tobramycin and ceftazidime via PICC and homecare.</p>
<p>&nbsp;</p>
<p>After about 5 to 7 days of treatment, my insulin needs are altered dramatically. &nbsp;I must nearly halve my basal rate and almost double my I:C rate.</p>
<p>&nbsp;</p>
<p>I've attempted to google for this phenomenom, but with no success.</p>
<p>&nbsp;</p>
<p>Does anyone else experience this?</p>
<p>&nbsp;</p>
<p>If so, what does this happen?</p>

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>

Originally posted in Cystic Fibrosis - Adults

Ok so i refused the insulin because i jus started diabetes education and when i went there we said we werent starting insulin just yet..also my cf doc said she didnt want to start that either..well this on call doctor thats covering for the weekend called it in..

I refused because i didn feel right and wanted to ask her first if it was necessary since it is only that crazy high cause of the prednisone..i have not been diagnosed as diabetic as of now an we have been just checking blood sugars an loggin 2hour after each meal as weve done the readings before meals and they were normal..so with that bein said did i do the right thing?..

I know ive heard that insulin actualy can do good and bring fev numbers up..but just didn want to start something in my body until i actualy talked to the doctor myself and get her opinion <img src="i/expressions/face-icon-small-smile.gif" border="0"> …whats yours ?