PaigePaiges Page

Originally posted in Cystic Fibrosis – Adults

<p>Bare with me folks………..</p>
<p>I need a favor. &nbsp;</p>
<p>In 2010, I signed an agreement with Papa John's International to raise money for CF research. In that agreement, all orders placed, using the CURECF promo code, would dedicate 20% of that sale to the CF Foundation. &nbsp;That agreement expired on 7-31-11. &nbsp;I'm proud to say that $10,000 was raised for the CF Foundation. &nbsp;That means Papa John's made $40,000 in a 7 month period (we signed an agreement with them in November).</p>
<p>Where's the problem?</p>
<p>Papa John's has continued to use the CURECF code beyond the expiration. &nbsp;I'm just a simple guy, that wants to do everything I can to find a cure for Cystic Fibrosis. &nbsp;Papa John's knows that the CURECF code was the MOST successful code that they have EVER had and chose to keep it running…..selling pizzas under false prestences. &nbsp;I have a problem with that. &nbsp;I asked Papa John's execs to audit the system and pay anything due to the CF Foundation…..they balked. &nbsp;Apparently, selling a pie means more to them than finding a cure for a disease that very much needs a cure. &nbsp;As of today, people are still buying Papa's using the CURECF code, thinking that they are helping us find a cure.</p>
<p>I'm hoping that you all will share this email with others and send an email to: rich_butler@papajohns.com asking him to honor his committment to the CF Foundation. Tell him you won't buy anything from Papa John's until you know that he has done so. &nbsp;I will let you all know when they have done the right thing. &nbsp;I have already taken this story to Twitter and FaceBook and my guess is that, in light of the bad PR they've been getting from the "chink" comment, they will do the right thing. &nbsp;</p>
<p>Please send that email.</p>
<p>God Bless and CURECF!</p>
<p>Roy E. Ice, Julie's Dream Team</p>

Originally posted in Cystic Fibrosis – Adults

<p>This is weird! &nbsp;Every so often I get itchy, red hives JUST on my picc line scars. &nbsp;I have had allergic reations before, and this isn't it. &nbsp;They just appear suddenly on a scar and after awhile go away. &nbsp;Has anyone had this happen before?</p>
<p>&nbsp;</p>
<p>I have been sick for about a month now and read a tiny bit about the connection between the immune system and hives and wonder if being sick is making this happen? &nbsp;Is scar tissue different and maybe more susceptible while I'm sick?</p>
<p>&nbsp;</p>
<p>Such a weird thing to happen…any ideas?</p>
<p>&nbsp;</p>
<p>Jessy</p>

Originally posted in Cystic Fibrosis – Adults

<div>Hi guys!</div>
<div>&nbsp;</div>
<div>My 30th birthday is approaching, and to celebrate this entrance into CF senility (just kidding, I am extremely fortunate to be seeing this decade!), I wanted to raise some $$ for CF.</div>
<div>&nbsp;</div>
<div>I'm thinking of doing Great Strides and putting together a team.&nbsp; This part is easy.&nbsp; I also wanted to have some kind of a benefit.&nbsp; I've been to one before where it was fairly simple – just at a bar, $50 at the door – that got you two drink tickets and the rest of the money went to the charity.&nbsp;</div>
<div>&nbsp;</div>
<div>Does anyone have any ideas / suggestions / experience with having a benefit like this?&nbsp; I'm trying to keep it somewhat simple, so I don't make myself sick orchestrating it!&nbsp; Lol.</div>
<div>&nbsp;</div>
<div>Thanks!! <img src="i/expressions/face-icon-small-smile.gif" border="0"></div>
<div>Kris</div>

Originally posted in Cystic Fibrosis – Adults

<p>Josh has been coughing up blood off and on since yesterday morning.&nbsp; The largest quantity was 1/2 cup, but in total I would guess it's more than 2 cups.&nbsp;We called the hospital and are headed to the ER.&nbsp; Thankfully his regular doctor is on this weekend.</p>
<p>She mentioned that Josh may require an embolization.&nbsp; I know what it is, but we have no experience with the proceedure or recovery.</p>
<p>Any advice for us?&nbsp; Thanks!</p>

Originally posted in Cystic Fibrosis – Adults

<p>I just received a VEST I got off eBay & am excited to start using it however although I've read the manual & understand how to input settings I'm not sure what would be a good one to start off with. I need a gentle program to begin with as I don't want to damage my sensitive ribs. Obviously there will be trial & error until I find what works best for me. Unfortunately I live in a country where the doctors don't know how to use the VEST so I'm hoping to get some suggestions from those of you with VEST experience. I tried contacting HillRom but they ignore me. Thanks so much.</p>

Originally posted in Cystic Fibrosis – Adults

<p>I was wondering if you build up tolerance to Megace ES over time? I was on Marinol on and off for a while, but after a week or so on i would stop getting the benefits. Then I'd take &nbsp;week off, then go back on, etc. The problem with this program is that I was getting too sick too often to really be able to afford one week without being hungry. I recently switched to Megace ES, and I like it a lot better so far. The hunger is more even over the day (rather than 30 mins after the dose) and it doesn't make me sit down and only be able to think about food. I was just wondering if the tolerance thing can occur with this drug too? I realize Marinol is THC and Megace is a hormorne so I was wondering if that would make it so I could just take this indefinitly without any tolerance building up.</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 – Adults

<p>Was wondering what life was like for you when you were around 26 years old. How is life like now? Any advice for the younger cfers to live as long as you have? Can you tell your story? Intrested to know……</p>

Originally posted in Cystic Fibrosis – Adults

<p>So..for the past few months I've been sick. My baseline FEV1 is usually 95, and went down to 72. So I was in the hospital for 2 weeks, with IV antibiotics for 1 week back in mid November…and my FEV went up only to 77!!! I was so frusterated…so were my doctors, so they did a bronchoscopy to check for bugs they weren't treating. At the time of the bronch, my Dr said they wanted to admit me (again) right away. I said no.</p>
<p>Well, I went to the clinic again today, and my fev is no better. They want me to go into the hospital again for three weeks. Well..i'm torn. It would be a Huge inconvenience right now..I'm a senior in high school, busy with college visits, exams and whatnot..and to have this setback again after it didn't help too much last time is just something I don't know what to do with. As of this moment, I told them I will stay on oral antibiotics, and they tried very hard to persuade me to go to the hospital, because my CT scans shows bad results, and the bronch also revealed a lot of secretions, and pus. I know this is bad. I do. But I feel like this is my new baseline, and I want to try to heal on my own for a while longer…I know I'm risking getting worse, and I think I will end up probably going to the hospital in a month or so. &nbsp;But my question is, have you ever experiened something like this? Did you refuse to go to the hospital, and did it pay off or do you regret it? Thanks for your input.</p>

Originally posted in Cystic Fibrosis – Adults

<p>I find it very difficult to have people understand me when they dont have cf and do not know much about it. I try to live a normal life and not let anything affect me too much but what most do not understand with this disease is that sometimes you just need to rest and sleep. My boyfriend is very proactive and has a very busy life. I think he has some problems because he can never just relax, always has to be doing something. We are in the process of moving and I got my really bad joint pain for three days. I had to be in bed and not help at all. I try to make him understand, I just cant help, and he tries to accept it but I can tell he fully does not. His parents are the same where they have a lot of family functions where everyone is expected to attend. Sometime I just can not do it! I just want to rest! I think they look at me like im making excuses. They dont know too much about my diease because they dont ask. Just frustrated because I want to live a normal life but as I get older I am seeing that I really need to focus on sleep and resting when Im feeling under the weather. Sorry for the venting……any advice to help people who do not know much about the disease understand and not see the disease as not&nbsp;just an&nbsp;excuse to get out of things?</p>