Originally posted in Cystic Fibrosis - Adults

<p>Hi, I'm pancreatic sufficient, and do not need to take enzymeres and have no problem (no problem at all) to gain weight. I'm wondering now, if it will stay that way "always".</p>
<p>Have any of you been PS and eventually needed to take enzymeres and such?</p>
<p>Thanks</p>
<p>G.</p>

Originally posted in Cystic Fibrosis - Adults

<p>My son is now in a trial with 770/809. He is starting out on just 809 for 2 weeks. Then he will start it in combo with 770. He is a Double Delta508.&nbsp;</p>
<p>Anyone who has been in this trail that has any positive affects?</p>
<p>And what is the differnce with 661 in combo with 770?</p>

Originally posted in Cystic Fibrosis - Adults

<p><a href="http://www.cff.org/aboutCFFoundation/NewsEvents/2-15-Cayston-Patients-May-Face-Treatment-Delays.cfm">http://www.cff.org/aboutCFFoundation/NewsEvents/2-15-Cayston-Patients-May-Face-Treatment-Delays.cfm</a></p>

Originally posted in Cystic Fibrosis - Adults

<p><a href="http://www.lhj.com/health/news/choosing-my-life-or-my-unborn-child/?page=2">http://www.lhj.com/health/news/choosing-my-life-or-my-unborn-child/?page=2</a></p>

Originally posted in Cystic Fibrosis - Adults

<p>I got back from a vacation tonight. Flying about 4 hours in the air total today.</p>
<p>I have been feeling ok all week out of town. I haven't had a bleed in about a year.</p>
<p>Then I got home from the airport and I started having some hemoptysis. About a couple tbs. (same volume as last year)</p>
<p>I was wondering if anyone else experienced this right after flying (i felt a lot of pressure on my chest during ascent and descent of flights)</p>
<p>I don't know if I should contribute this to the flight or illness.</p>
<p>THANK YOU FOR READING!!</p>
<p>&nbsp;</p>

Originally posted in Cystic Fibrosis - Adults

<p>Hello EVERYONE,</p>
<p>I am starting a new thread as a continuation of the old thread found below:</p>
<p><a href="messageview.cfm?catid=5&threadid=611732">Heading back to 60+ FEV1 from 26. </a></p>
<p>The new thread will be maintained as follows:</p>
<p><strong>All new progress will be posted in this FIRST post in the appropriatly labeled section. Please read before asking questions that maybe already answered I will do my best to be very thorough and clear, however if your question is not answered please post it. The first post will include a summary of what I am using and doing, I will make periodic seperate posts on progress and more detailed things.</strong></p>
<p>Everything as far as progress and different methods will be put in chronological order and I will have a list of things that <strong>HAVE</strong> and <strong>HAVE NOT</strong> worked for <strong>ME</strong>.</p>
<p>Over time the different methods and suppliments mentioned will be linked to either a Wikipeadia page, or my blog for further in depth explination of what the suppliment does and how it is related to CF. The link to my blog is in my signature. This will take time to post a detailed write up on everything I have to talk about but I will try to be quick.</p>
<p>The Goal of this is to help others educate themselves about possible treatment methods that maybe helpful to them especially if tradiational medicine has failed. If you are not sure of something, ask your doctors but also use your own common sense. I am not able to tell everyone what possible drug interactions (if any) some of these things may have with medications you take, but always do your own research to find out if you take some far out uncommon drugs.</p>
<p>What I'm using/doing now aka What seems to be working or in evaluation:</p>
<p><strong>(NOTE THINGS MAYBE LISTED TWICE BECAUS THEY FIT IN MORE THAN ONE CATIGORY)</strong></p>
<p><strong>Anti Inflammitory:</strong></p>
<p>Advair HFA Inhaler – As needed for tightness. (Start using recently as of Feb 1)</p>
<p>Barleans Fresh Catch EPA/DHA Fish Oil – STARTED 2/10/12 Daily 5 GRAMS</p>
<p><strong>Bronchodiolation:</strong></p>
<p>Ventolin Inhaler – As needed generally 2 puffs twice a day. (Start using recently as of Feb 1)</p>
<p><strong>Anti-Infective:</strong></p>
<p>Puracyn OTC Wound Spray – 2ml 4 times daily nebulized – STARTED 2/10/12</p>
<p><strong>Mucus Alteration:</strong></p>
<p>Mucinex 1200mg twice daily – STARTED 11/1/11</p>
<p><strong>Airway Surface Liquid Replacement:</strong></p>
<p>Hypertonic Saline 10% 4ml 2-4x daily – STARTED 12/29/11</p>
<p><strong>Airway Clearance:</strong></p>
<p>Vest – twice a day on gym&nbsp;off days</p>
<p>Gym Days (Monday – Tuesday – Thursday – Friday – Saturday) Wight lifting 45min – 1hr</p>
<p><strong>Digestion/Sugar Management:</strong></p>
<p>Enzymes – 8-9 with meals 5-6 with snacks</p>
<p>R-ALA (REAL – Alpha-Lipoic-Acid) 200mg with meals and creatine drink, to help creatine/glycogen uptake as well as glucose transport. – (STARTED 2/10/12)</p>
<p><strong>Mainly Bodybuilding Related things are below this point:</strong></p>
<p>R-ALA (REAL – Alpha-Lipoic-Acid) 200mg with meals and creatine drink, to help creatine/glycogen uptake as well as glucose transport. – (STARTED 2/10/12)</p>
<p>Universal Nutrition Animal Pak (bodybuilding suppliment of Vitamins/minerals/essential amino acids) – (STARTED 2/10/12)</p>
<p>Universal Nutrition Animal Flex (Joint Suppliment Glucosamine/MSM/Chondroitin CSA & CSC/Flax Seed Oil/Hyaluronic Acid) – (STARTED 2/10/12)</p>
<p>Pre-workout suppliment – Muslce Pharm Assault – (STARTED 2/10/12)</p>
<p>Workout Days Post-Workout (BCAA's) Muscle Pharm Re-Con – (STARTED 2/10/12)</p>
<p>Workout Days Creatine – Muscle Pharm (no loading) Creatine. Everyday for 3 weeks, cycle off for 1 week then restarting. – (STARTED 2/10/12)</p>
<p>Barleans Fresh Catch EPA/DHA Fish Oil – (STARTED 2/10/12)&nbsp;Daily 5 GRAMS</p>
<p>Whey Protein Post Workout – Muscle Pharm Combat Powder (Started 2/14/12) Training Days.</p>
<p>Weight Gainer 1 time on off days, twice on training days – Optimum Nutrition Pro Complex Gainer (Started 2/14/12)</p>
<p>I have more to post but it's time to go to sleep. EDIT: I did have this all nice and bolded and seperated forum seems not to like it, I'll try to fix it later today when I wake up.</p>

Originally posted in Cystic Fibrosis - Adults

<p>Hi everyone. I know I havent been up here much. I've been quite sick in the last year. I am now on O2 24/7 at 4-6 lpm. I now have CFRD. My&nbsp;FEV1&nbsp;have dropped to&nbsp;24-27% (depending on the day).&nbsp;I am constantly on IVs. My CF has progressed much faster than we anticipated. The Drs&nbsp;have told me I am in my transplant window & it is time for a lung transplant.&nbsp;In March,&nbsp;I will have to relocate to be&nbsp;closer to my transplant clinic at Duke Hospital & unfortunately my insurance does not cover the cost of relocation.&nbsp;I know everyone up here has their own financial struggles, but I wanted to post this anyway. If you can't donate, then&nbsp;maybe you can&nbsp;pass the word along. I appreciate all the support I have gotten from this site over the years. Please help if you can. Thank you all so much.</p>
<p><a href="http://www.giveforward.com/lungsfordanyell">www.giveforward.com/lungsfordanyell</a></p>
<p>I have a Paypal account if you rather transfer money directly: <a href="mailto:breathe4life@embarqmail.com">breathe4life@embarqmail.com</a></p>
<p>or you can send a check to my bank at:<br />BB&T<br />Attn: Lungs for Danyell<br />PO Box 628<br />Williamston, NC 27892</p>

Originally posted in Cystic Fibrosis - Adults

<p>For those of you who said you were able to lower the amount of enzymes you take, how did you know you needed less? Some of you have even said you were able to stop using enzymes completely. But how did you know? I've been taking enzymes all my life. What would make me think I now need less or none at all?</p>
<p>I confess, I'm bewildered!</p>
<p>&nbsp;</p>
<p>~~~~~~~~~~~~~~~~~~~~~~~~<br />Debbie, diagnosed with CF at birth, intermittent CFRD, hypothyroid</p>

Originally posted in Cystic Fibrosis - Adults

Ive never had a nurse take my neb cups and rinse them in the sink!..i cant use tap water let alone to do my sinus rinses!..this to me is a big no no!..also yesterday the nurse got mad at me because i threw my nebs away..im suposd to have new clean ones each time..she tells me no only once a day ? No everytime so im complaining..im so glad i can talk and im not crippled!!