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>

Originally posted in Cystic Fibrosis News From Medical News Today

A new study found that the combination of inhaled dry powder mannitol with standard therapy for cystic fibrosis resulted in maintained improvement in lung function for 12 months. In addition to being effective and safe, the easy administration of the treatment might help enhance adherence with treatment in individuals suffering with the condition…

Originally posted in Cystic Fibrosis Foundation

Originally posted in Cystic Fibrosis Foundation

Originally posted in Fibrosis News

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.

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…