Originally posted in Fibrosis News

The Billings Clinic has been approved as an accredited Cystic Fibrosis Foundation Affiliate Program that comes with a $35,000 annual allotment to help pay for staff, equipment, research and education to help patients in Montana and Wyoming.

Originally posted in Cystic Fibrosis - Adults

So I was told by my CF nurse to not us ANY tap water on my neb pieces. This makes it really hard to use distilled water for the washing step cause you have to use SOOOOOOO much to get all that soap off the cups and pieces. What are you all doing? Have you stopped using Tap water and if so then what is your method. I use to rinse and wash with tap and then put in my Avent Steamer to sanitize and kill anything. But nurse says NO Tap what so ever… So now what. I will go through WAY too much distilled water daily if I have to use that to wash the nebs in. They are so soapy that it needs a good rinse like from the faucet not a gallon bottle of tap water that I pour on it. I will need so much.<br><br>So now I was thinking of just rinsing with distilled water after each use and THEN at the end of the week do a washing and sterilizing. That way I am just rinsing&nbsp; one time and not have to go through so much distilled.<br><br>What is everyone doing these days.<br><br>This all stemmed from that article that came out about the amoeba brain eating thing. Nurse said she has witnessed a death from that from a person with lake water and it was not a pretty site. So she says no Tap water in any neb or netti pot. No tap water for your lungs or sinuses at all….<br><br>Suggestions?<br>

Originally posted in Fibrosis News

Adding inhaled powder mannitol to standard therapy for cystic fibrosis produced consistent lung function improvement for up to 52 weeks, according to this study.

Originally posted in Fibrosis News

At six-years-old, she was diagnosed with cystic fibrosis, a disease which causes mucus to build up in her lungs.

Originally posted in Cystic Fibrosis - Adults

Hello all,<div><br></div><div>I'm debating whether I should make use of a wheelchair</div><div>Backstory: I'm going to visit my girlfriends family over the Christmas holiday in Seattle. My pft's are about 30%. My girlfriend says we're going to be doing a lot of activities and walking around downtown/pike's place market and all the Seattle tourist attractions. I've met her parents before and they are thrilled to have me visiting and want to show me everything! Her mother asked if I needed to rent a wheelchair for the activities and I&nbsp;immediately&nbsp;thought no way. But my girlfriend thought it was a good idea. Considering she knows my limits and knows her family I then reconsidered. &nbsp;</div><div><br></div><div>My family does not think it's a good idea. I've never used a wheelchair before and I think I would feel awkward and&nbsp;dependent. They think it would be better to just walk to my limit and then rest or shorten the activities they have planned. But I would also feel awkward doing that.</div><div><br></div><div>But the fact is that I wold not make it through the regular planned activities and walking.</div><div><br></div><div>So do I take the wheelchair and feel awkward?</div><div>Or do I explain my limits to the family and tell them I can't do much in a day and feel awkward?</div><div><br></div><div><br></div>

Originally posted in Cystic Fibrosis - Adults

<a href="http://www.pennlive.com/midstate/index.ssf/2011/11/lab_at_hershey_medical_center.html" title="" target="_blank">Virus</a>&nbsp;used wipes out cancer in a week! All kinds too.<div><br></div><div>I know researchers have been trying to use viruses for a while to transport the CF genes into the airways, but with little success or very short amount of expression. However this virus sounds to me like it maybe able to be used to transport the CF genes&nbsp;potentially with good results.. I guess only time will tell. Good read regardless.</div><div><br></div><div><a href="http://www.pennlive.com/midstate/index.ssf/2011/11/lab_at_hershey_medical_center.html">http://www.pennlive.com/midstate/index.ssf/2011/11/lab_at_hershey_medical_center.html</a>
</div><div><br></div>

Originally posted in Cystic Fibrosis - Adults

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Originally posted in Cystic Fibrosis - Adults

&nbsp;I've just got to vent out here…. Now I've been dealing with some serious pain since mid-July in my legs and arms and now my back and even face… I've been chasing around to 5 different doctors to get a handle on it and no answer or real solution to address the problem! I'm ready to start pulling my hair out…<div><br></div><div>I may sound like a broken record but I'll sum it up….</div><div><br></div><div>I'm 36 with a "mild" case of CF. I had a Grand Mal Seizure in March that led to the discovery of a golf-ball size tumor in my brain that I had resected in April and that all went well.&nbsp;</div><div>Now starting in July I would wake up with my feet curled up like crow's feet and my ankles and calfs would ache all day… In September I started waking up with my fists clenched so tight my wrists and arms would ache ALL DAY In October the involuntary contractions would occur during the day while I was at rest… Now in December I started noticing my facial muscle having spasms and contracting at night again aching most of the day! Now along with the pain My hands and feet have had the pins & needles and for the most part have a greatly diminished sense of touch, almost NUMB…</div><div><br></div><div>This is where the game of Medical HOT POTATO starts:&nbsp;</div><div>Now just having a brain tumor removed recently I started with my neuro-oncologist to see if something was wrong or what… Answer, NO since it's affecting both sides of my body and the location of my tumor they didn't see this as surgery or tumor related. Nor did they feel the Anti-Seizure meds I have to be on would cause this as well… NEXT!</div><div>Still having issues I saw my other neuro had some blood work done (all good) who agreed with the&nbsp;oncologist's answer and thought it could be some sort of neuropathy due to my CF (vitamin or mineral deficiency) He gave me a script for OTC magnesium and told me to come back for an EMG… OK, NEXT!</div><div>Did the EMG and his findings where that I have Carpal Tunnel??? Left there with some stupid wrist splints and was told to try that for a while. (still didn't explain my feet or legs) NEXT!</div><div>&nbsp;I went to my CF doc for a FULL check-up. PFT's good, X-ray and DEXA scans were GOOD All my blood work came back good. I should be just fine on paper… My CF doc did not believe any of my former meds (Cipro, Cayston, Levaquin) would be causing this because I've been off &nbsp;them so long and to rule out my current CF meds he had me taper on and off them to rule them out. Did that and the problems persist. NEXT!!!!</div><div>I went to my&nbsp;psychiatrist&nbsp;&nbsp;to see if it was depression or my dosage Effexor causing this…. NOPE and she thought my dosage should actually go up… NEXT!</div><div>My face started giving me problems and my neuro throws another nasty med (Neurontin) my way to combat that, BUT STILL NO ANSWERS!</div><div>Went to a Chiropractor and he thinks it's med related, of course, or something with my spine and now I've come full circle and still have the problems and NO clue!!! &nbsp;F!@#$%**!&nbsp;</div><div>Prior to this mess I had minor joint and muscle pain for years but it was manageable, I would give anything to have that back!</div><div><br></div><div>Any ideas or suggestions would be great.</div><div><br></div><div>Thanks,</div><div><br></div><div>&nbsp;&nbsp; &nbsp; &nbsp; &nbsp; Abnormal</div><div><br></div><div><br></div>

Originally posted in Cystic Fibrosis - Adults

<p>I'm getting back into exercise and looking for CF specific recommendations of exercises. I'll be working with a trainer, of course, but I'm interested in what others have found useful. Note that I have already started cardio by biking 9 miles a day to and from work.</p><p><br></p><p>Thanks!</p><p>steve</p>

Originally posted in Cystic Fibrosis Foundation

Originally posted in Cystic Fibrosis Foundation

Originally posted in Cystic Fibrosis - Adults

Put Aerosole head in Altera before putting Cayston in it. That is all.

Originally posted in Fibrosis News

The Naperville chapter of the Cystic Fibrosis Foundation celebrated its fourth annual Uncork the Cure Wine Tasting on Nov.

Originally posted in Cystic Fibrosis - Adults

<div>Trying to get on the transplant list. They do a bunch of evaluations. Found that my&nbsp;aortic valve is calcified, (needs replacement) and arteries are hardened a bit. They won't move ahead with the transplant till heart issues are fixed.&nbsp;</div><div><br></div><div>Any other "older" cf'ers out there with heart issues?&nbsp;</div><div><br></div><div>Dietitians? Any advice on diet now that cholesterol has become an issue?</div><div><br></div><div><br></div>

Originally posted in Cystic Fibrosis - Adults

<BR>My daughter has recurring gastrointestinal problems where she has throwup episodes which come without warning despite being on prevacid, miralax twice daily, MOM, and a gluten free diet. Sometimes she gets some acid reflux before the throwup episode and sometimes not. Also, it's not even apparent that she has an obstruction as she's done gastrogaffin enemas. Any advice?

Originally posted in Fibrosis News

Newly graduated from The Catholic High School of Baltimore, Gugliotta was moved by the stories told by young people like herself that were struggling to live with cystic fibrosis.

Originally posted in Cystic Fibrosis - Adults

I've seen post in the past about taking less enzymes or none at all while on Kalydeco. Can anyone who's on this shed more light. I know the docs are going to&nbsp;tell patients to continue&nbsp;taking enzymes as directed, but would be nice and a huge quality of life factor if this drug limited or even eliminated the need.

Originally posted in Cystic Fibrosis - Adults

<p><br>My son has A typical cf we do neb treatments, vest, enzymes etc. He is 3 yrs old hospitalized 5 times for respitory infections and testing postive for different bacterias. The last year and a half he has had a fever everyday not always high somewhere between 99.7 and 100.5. He acts sick gets glassy eyes flushed in the face and fussy. In July the dr told us when he got "sick" the next time she would put him in the hospital do a bronc and see want his lungs look like. We are now going through his third sickness since than no hospital stays she keeps putting him on oral antibotics that are not working. In Oct. he tested postive for staph he was on bactrium for 3 weeks, when we went back he was still testing a plus 3 for staph she put him on cipro for 10 days and didn't retest. We are do for an appointment Dec. 28. He started with a cough and running nose ( which is thick and green like always) on Sat. I called yesterday because he isn't getting better. When the nurse called back the dr is putting him back on bactrim for 14 days. I am supposed to call tomorrow morning to let them know how he is. Sorry for the long post.</p><p>My question is do I start him on medicine that didn't work 2 months ago ? I really don'tsee the point how can I get the dr to listen my husband and I. We are so fustrated. We have seen first how bad cf can be and we don't want that for our son. And his fevers can go as high as 104.5</p>

Originally posted in Cystic Fibrosis - Adults

Happy Wednesday!!<br><br>I am curious how many of you have a handicap/disability parking pass?<br><br>I am interested because during the winter months it is hard for me to walk from a building to my car without coughing to the point of vomiting.&nbsp; I am not disabled, but it is hard for me to function during winter months i.e getting groceries, shopping, etc.&nbsp; <br><br>Thank you,<br>

Originally posted in Cystic Fibrosis - Adults

<BR>Recently, my CF doctor has requested that all his patients stand during spirometry.&nbsp; Is there a difference in FEV1 between sitting and standing?&nbsp; Is standing the new norm?&nbsp; What does your doc ask you to do?

Originally posted in Cystic Fibrosis - Adults

Ok, first, sorry if this has already been done; I searched the forum with different keywords, and found a few posts on the general time-of-month stuff, but nothing really fit my question.&nbsp;<div><br></div><div>I'm nearly 21, w/CF. It's pretty mild (PFTs are in the 120s/110s usually, and I haven't been admitted in over 3 years). I'm also on a progesterone birth control. I can't take the estrogen ones because I am prone to migraines with auras, and estrogen can increase the chance of stroke or increase the instance of migraines.&nbsp;</div><div><br></div><div>Anyway, ever since I can remember, I have never had a "regular" period schedule. I can have two in a month, or skip a month; it varies big time. I originally tried the estrogen b.c. to see if that would help but, because of the migraines, couldn't stay on it long enough to find out. The progesterone b.c. haven't had any effect on them.&nbsp;</div><div><br></div><div>I was just wondering if others with CF have this issue? If you do, have you found anyways to get it on a schedule? It would just be nice to know when to expect it, you know?&nbsp;</div><div><br></div><div><br></div>

Originally posted in Cystic Fibrosis Foundation

Originally posted in Cystic Fibrosis Foundation

Originally posted in Cystic Fibrosis - Adults

<P><BR>Hi, I'm on my 1 hr. drive to on my&nbsp;way to catch the 3 hr train ride to Philadelphia to check in for my Vertex 770 trial. I've forgotten my Cayston. I need&nbsp;3-4 doses (so 3 vials medication&nbsp;and 3 ampules saline) to get me through until I return home tomorrow afternoon. </P>
<P>&nbsp;</P>
<P>Can you help a girl who's helping advance drug development out in this pinch? We can meet at the trainstation, at my hotel or I can take you out for dinner. </P>
<P>&nbsp;</P>
<P>Only serious candidates send me a PM with your cell phone and I'll call you back. </P>
<P>I really, really need the medicine as I am borderline needing to go on IVs – shouldn't be traveling but here I am in the name of drug development I'm doing it so we can get new medications. Please if you can possibly help please PM me. I'll check it on the train. </P>
<P>&nbsp;</P>
<P>Thanks!</P>
<P>Lauren</P>

Originally posted in Fibrosis News

Large-cap biotech firms start acting like Big Pharma — choosing to buy growth instead of seeking it from internal drug development.

Originally posted in Cystic Fibrosis News From Medical News Today

Adding inhaled dry powder mannitol to standard therapy for cystic fibrosis produced sustained improvement in lung function for up to 52 weeks, according to a new study. Along with the treatment’s efficacy and good safety profile, the convenience and ease of administration of mannitol treatment may improve adherence with therapy in these patients…

Originally posted in Cystic Fibrosis - Adults

<P>Does anyone recognize these symptoms: Sometimes in the mornings, I get a burning sensation in my head, I lose all energy in my body, it blackens before my eyes, and my hearing is disminished. I need to lay down and rest and then it subsides. I am not sure if this is CF related, or&nbsp;anxiety related. Normally when I get this, I got one this moring, the last one was in summer, is when I am thinking too much and get anxious. </P>
<P>&nbsp;</P>
<P>Does anyone recognize?</P>
<P>&nbsp;</P>
<P>Thanks</P>
<P>&nbsp;</P>
<P>G.<BR></P>

Originally posted in Cystic Fibrosis - Adults

<span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">I'm</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">deltaF508</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">heterozygote</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">, I have a</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">cousin</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">who has had</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">8 episodes of&nbsp;</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); "></span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">pancreatitis</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">that led him</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">to the hospital</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">, his doctor</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">recommended</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">the</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">diet&nbsp;</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); "></span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">alone.</span><div><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); "><br></span></div><div><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;W</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">ill be useful</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">for</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">him</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">to know</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">if</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;he is&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">deltaF508</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">carrier</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">?</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span></div><div><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">treatment or&nbsp;</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); "></span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">prevention</span><span style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">&nbsp;</span><span class="hps" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">would be different</span><span class="" style="font-family: arial, sans-serif; font-size: 16px; background-color: rgb(245, 245, 245); ">?</span></div>

Originally posted in Cystic Fibrosis - Adults

What a great topic to have to discuss here, eh? <b>Getting old with cf!</b>&nbsp;We've got some new issues to address, as many of us pass previous life-expectancies.<div><br></div><div>I've sported a "spare tire" just above my belt ever since Middle School. (Sometimes only that of a road bike, sometimes one from perhaps a small Japanese car.) My slightly above normal weight was always the&nbsp;envy of my two older brothers who were the more typically skinny cf'ers.</div><div><br></div><div>But cf center docs have emphatically told me not to do anything about it. While they encourage aerobic exercise, they didn't really want me to eat less, or loose weight. (Weight&nbsp;maintenance is highly&nbsp;correlated&nbsp;to thriving for people with cf.) This advice in spite of my reasonably functioning pancreas. Though I've had two (memorable) episodes of pancreatitis, I've never needed enzymes, nor lost weight since high school.</div><div><br></div><div>So now I'm in my 50's. I said, "Really?" This fat on my front – that is derided by men's health experts as a heart risk – is somehow acceptable on me, just because I have cf?&nbsp;</div><div><br></div><div>In the process of trying to get on the list for a lung transplant, it was determined that I need to have a heart valve replaced first. Aortic Stenosis; an old people problem. The heart people inform me that I have semi-hardened arteries, and I need to go on anti-cholesterol medication.&nbsp;</div><div><br></div><div>Curious if anyone else has begun to experience this or other age-related issues.</div><div><br></div><div><br></div>

Originally posted in Cystic Fibrosis - Adults

….and 2 adults, a 5 yo, and a 1 yo baby??<br><br>We are bringing my parents on a mediterranean cruise for their 50th anniversary next year. We have a standard size cabin booked. So y'all know how big a vest is, plus hoses, plus nebs…will I be able to fit all this in the room? Would I be able to do my chest pt in the bathroom-from what I've heard, that might even be tricky.<br><br>Hubby and I are really well traveled. We've done some crazy trips all over the world, but this will be our first cruise. Figured its a good way for our parents and our 5 yo to see alot, but not have to move ten times. <br><br>The hotel/chest pt issue is always an annoying one, but I usually come up with a solution. The issue is, as some of you may have experienced-not waking the rest of the family while you have to get up 1.5 hours earlier than everyone else to do therapy. Make that a 5 yo and a 1 yo and oh boy…I do not want miserable meltdown kids woken up by moms vest in europe.<br><br>Anyway, I'm wondering what issues you cruisers-Parents of cfers, or cfers-have come across while cruising. <br><br>Not sure what to do to resolve this. Part of me feels like, we are spending so much on this to begin with, and above all trying to make this the most special time for my parents, we may as well book a suite or larger room type so we're all comfortable and well rested. (above all, I don't want to do all this and come home sick bc I'm exhausted) But, we're already paying so much…ugh.<br><br>