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View Full Version : Adults



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  1. long term hospital stay
  2. Just one day off
  3. GlobalGenes.org in Huntingdon Beach California
  4. Asthama and PFT?
  5. Achromobacter denitrificans
  6. Insurance for Orkambi (GA)
  7. cleaning tips
  8. First step for EU access for Orcambi; 2-5 for gating for Kalydeco
  9. Obamacare and Orkambi
  10. daily activities for folks that have PFTs in 30's and 40's?
  11. CF or asthama?
  12. Freebies.........
  13. Cfpaf
  14. Help needed with info about CF
  15. Lung Function
  16. Is there anything against Abscessus when Tygacil, Amikacin etc have failed?
  17. Have you stopped Orkambi because of side effects?
  18. Orkambi drug interactions that were not listed
  19. scared for my future
  20. North America cf conference starts tomorrow
  21. I need your help!
  22. Vanderbilt Pulmonary clinic in Tennesse anyone use them
  23. Hip Replacement
  24. Residual Functions Mutations going to be on label for Kalydeco
  25. Venting
  26. Second generation correctors + df508 heteros updates
  27. links to live updates for NACFC?
  28. A RespirTech Incourage System - For Sale - Northern New Jersey
  29. Vertex Conference Live Now--triple combo gets up to 75% function
  30. back to upmc
  31. Orkambi works even if FEV doesn't improve
  32. Super dry cough at night
  33. Pertzye?
  34. has the system been down????
  35. Anxiety on Orkambi?
  36. DIOS prevention options
  37. New Site Coming Soon
  38. Good news
  39. More next generation correctors coming
  40. Nasonex on back order?
  41. Mrsa
  42. New Orleans Adult CF Center
  43. Instagram
  44. Depression CF related
  45. IV ball options?
  46. Qvar 1 or 2 a day?
  47. Fish oil
  48. Pilots with CF
  49. Help I Need Advice ASAP!
  50. New collaboration for gene splicing
  51. Getting fat on Orkambi
  52. Opinions on Florida and living with CF; Doctors, Clinics, Medicaid, etc.
  53. Toothpaste brands?
  54. Vertex Conference Call
  55. For those struggling with m abscesses
  56. I had an idea.. fitness wearable to help CF in all ways
  57. What is your dream hospital?
  58. terrible adhesive allergy, possible iodine allergy connection?
  59. Depression & anxiety (a new way to cope)
  60. How do I delete a post?
  61. Dumped because I have CF...
  62. Interesting new clinical trial for 661/Kalydeco
  63. Surviving on Disabilty
  64. Cystic fibrosis smartvest airway clearence vest machine
  65. Pseudomonas Aeruginosa Erradicated
  66. the recalls we never learn about!
  67. long term linezolid
  68. Fascinating back story on vertexs step into cff
  69. Working on disability - SSDI
  70. Wearing masks in public may help wearer from getting flu
  71. I'm 36!
  72. Nebulized Colistin & Join Pain?
  73. ABPA + Lung infection = pulse dose of steroids + IV antibiotics..
  74. A New Home for CysticFibrosis.com!
  75. anxiety about hemoptysis
  76. nasal polyps and deviated septum
  77. Cayston
  78. job
  79. Need ideas
  80. Giving Tuesday!
  81. Singing and lung disease
  82. should I push for testing?
  83. Support for genetic testing with negative sweat test
  84. Moving to another state
  85. Cayston's Horrible Packaging
  86. Port infections--probiotics may cause
  87. Pancreatic Sufficient and Kalydeco
  88. Afflovest?
  89. Why was my post deleted?
  90. Possibility to prevent meconium ileus while pregnant
  91. CF Foundation attendance policy
  92. Orkambi and Rash?
  93. Wonder if anyone else has heard this
  94. An upgrade to cysticfibrosis.com is being launched!
  95. Welcome home!
  96. Orkambi Updates
  97. We are working on restoring our Forums!
  98. Pari Velox neb system posted by rubyroselee september 4, 2016
  99. Alternative Treatment by Bryan August 26 2016-
  100. JRB52 Posted this on Jan 2 2016 - Sept 2 2016
  101. Sinus Surgery Posted by Sweet SammiJ on Aug 25, 2016
  102. Rare Mutations Should I Bother with a Sweat Test?by: anjanetteopal on August 31, 2016
  103. Is there any harm in higher body temperature? posted by S.R. August 25 2016
  104. Choosing New Insurance in Massachussettes
  105. How do you avoid the pity party when you tell people you have CF? July2015-Aug 2016
  106. Dating Another Person with CF? July 2015-Sept 2016
  107. I miss reading your posts, hope you are fine.
  108. Eye pain from coughing ?
  109. Love, CF and transplants
  110. Adult with CF - when/what/how to tell my kids?
  111. Pancreatitis/gall bladder removal?
  112. Amikacin IV recall- Anyone exposed to this????
  113. Knoxville Tennessee CF Center
  114. New Social Security rules for CF
  115. Rare Genes Summit
  116. Burkholderia cepacia help, PLEASE
  117. A new way to fix constipation/ staying regular
  118. A new blog: Distinguishing relapse from reinfection in mac
  119. FDA approves Orkambi for children ages 6 through 11...
  120. Nail pseudomonas risk?
  121. M. Abscesses and dentists in the news
  122. Pain Management & CF: The Dreaded Dispute
  123. App for Precise Enzyme Dosage
  124. Gene Therapy for all forms of CF being studied
  125. Abbvie CFScholarship...Be sure to vote!
  126. IV Flush recall for B-Cerpacia
  127. On IV's 2 weeks and my lungs have gotten really sore?
  128. What to do if you don't like your clinic?
  129. CF plus Wegener's disease/granulomatosis with polyangiitis
  130. job implications from CF
  131. Is your insurer pulling out of Obamacare too?
  132. Pain patches?
  133. Posts not showing up?
  134. Exercise and You -NACFC Community Session
  135. NACFC Plenaries
  136. Cystic fibrosis mortality rates: Females
  137. Fog machines in October
  138. Need ENT Recommendation for Adult(Boston,MA or Portland ME)
  139. Travel to Thailand
  140. Market Research Opportunity - Adults only
  141. Ever Wonder What to Say in Difficult Times?
  142. Webinar: Infection Prevention During Bronchoscopy
  143. Potential ramifications of election...
  144. Article about Mycobacterium and CF
  145. Strange response to antibiotics, anyone else experience this?
  146. Sinus Surgery Recovery
  147. Medicaid questions
  148. Behind the Scenes: New Cool Finds!
  149. Medical Cannabis Inhaler to be marketed in Israel
  150. ACL cadaver allograft and CF carriers
  151. Vertex triple combo drug trials now enrolling
  152. 'Tis the Season to check your prescription status
  153. Today I ran out of spoons...
  154. The War Against Patients in Pain. Beware, this could be you!
  155. Painless microneedles instead of unpleasant injections...on the horizon~
  156. The paradox of Orkambi
  157. Importance of online communities
  158. Replacement Parts for Invacare MOBILAIRE 50 PSI Compressor
  159. So, if ivacaftor "works", what does that actually mean?
  160. UPMC Adult CF Center?
  161. Healthiest places to live in US with good doctor?
  162. Aerobika
  163. Free CF Vitamins
  164. Online stress reduction class for CF patients and caregivers
  165. Power Washing Lungs
  166. Updated layout: Living with CF blog page
  167. Vertex and Europe Outlook: Bright
  168. Great hope for those with one df508
  169. Culturelle/fish oil sale amazon
  170. Nebulized Tobi vs. Tobi Podhaler
  171. Health Care Changes(what is important to you)
  172. Everyone deserve to be happy :)
  173. Change in prescription category for Creon
  174. Ellen Show features adorable 2 year old with CF
  175. Miracle Flights: free medically-related air travel for ill patients, including CF
  176. Announcement: Portable Genomics and CFTechnology.org Partnership
  177. IUD required for new Vertex study
  178. Top remedies or tools for CF related ailments
  179. Low Cholesterol High Triglycerides have CFRD
  180. Ideas welcome: organizing tablets and capsules in a sensible way
  181. Francis Collins Dare to Dream!
  182. Befriending your legistlators...connect!
  183. Microscopic Submarines for the Stomach
  184. Taxes and clinical research stipend...
  185. Creon 24
  186. From our HOme Page: New Guidelines for CF Diagnosis
  187. New med port and blood clot
  188. sweating in the night
  189. orkambi and o2 sats
  190. Painful rash, joint pain, swelling
  191. Toe Nail Fungus
  192. confused about diagnosis
  193. Aurora Project: Pharma is trying to be Patient Centric! Help write the survey!
  194. Physical Therapy
  195. Celebrex??
  196. Remedy for sore stomach muscles from coughing
  197. USB cord to power eflow
  198. Feeding Tube Questions
  199. Postpone Transplant with Exercise?
  200. After two and half Months of Orkambi not sure what is going on?
  201. DiOS
  202. Failed to qualify for vertex, try again?
  203. American Healthcare Act
  204. Privacy and genetics and discrimination
  205. Extra Colistimethate- Colistin
  206. Hemoptysis from exercise
  207. FDA warning serious pancreatitis with Viberzi
  208. Embolization for hemoptysis
  209. Cystic fibrosis patients survive 10 years longer in Canada than in US
  210. Thanks to Sharktank and their work with non sense mutations!
  211. Reglan VS Domperidone in Adult CF patients
  212. Pre-existing conditions( Changes to health care bill)
  213. How do you clean an Aerobika?
  214. Tobi
  215. residual functions and 661
  216. CF/not CF
  217. Help please:best gaming system for treatments
  218. Mass Health help
  219. Increased cough
  220. Help Please-bleeding nose
  221. Stats:Age/Ht/Wt/Fev1
  222. Anyone else with fev1 @ 46%
  223. Transplant experiences
  224. How long to baseline?
  225. MRSA treatment options?
  226. Mycobacterium Abscessus
  227. Webcast: Rare lung diseases patient education day --saturday april 22nd
  228. PICC Line/Home IV Pointers?
  229. HomeInfusion Company?
  230. Running shoe advice (somewhat off-topic, yet on topic ;) )
  231. For the moms and dads
  232. from the home page
  233. Primary Care Dr
  234. AllianceRX Walgreens Prime
  235. Is no cough good or bad?
  236. Heterozygotes
  237. Carrier Unidentified Gene Mutation
  238. Thirsty on antibiotics?
  239. Hill Rom 105
  240. Dios
  241. IV protocol
  242. Immunodeficiency treatment options
  243. Question from DS on PICC
  244. Looking for input on a home spirometry device
  245. Now enrolling: Galapagos Study for DDF508
  246. FEV1 and Oxygen needs
  247. new for me
  248. Urgent call to action: Alternate health care plan has been reintroduced
  249. Times are a changing...and I DONT like it!
  250. scared - newly found out i had 2 CFTR mutations