Search results

Hey beautiful fellow transplantees/waiters: So in apologize in advance for the bragging, but last weekend at the CFF's annual Volunteer Leadership Conference I was beyond honored to receive the Alex Award - named after Alex DeFord and presented by her father. This is the Foundation's highest...

Hey everyone, Just wondering if anyone knows whether there is a "gold standard" for predicted FEV1 calculation. I did some internet searching (always 100% reliable when it comes to medical stuff <img src="i/expressions/face-icon-small-wink.gif" border="0">) and found about 5,000 different...

Hey guys, I know James is part of this community so I wanted to pass along the message that he got the call this morning and is currently in surgery to get his new lungs at Penn! Please send your thoughts and prayers down to him for a successful transplant and smooth recovery, and also to his...

Hey everyone, Jess got a call for potential new lungs this morning at 4:30. She is at Duke now, awaiting the word on whether these are the perfect set for her. Please, please keep her in your thoughts and prayers for a successful surgery today, along with peace for the donor family as they...

Hey guys, I didn't see this posted here so I wanted to share. A young woman with CF named Mari got her wings today. You can see her in this wonderful video series on CF voice: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/goto/wedding.jsp...

Team Col Pres is definitely doing business right now! Jerry just posted on FB that he is headed in to hopefully receive his perfect new lungs! Please keep this very cool CFer, his lovely wife, and baby son in your thoughts and prayers! Let's all send lots of good vibes! Here's hoping this is...

Hi everyone, I debated on whether or not to post this here, and I hope no one feels that it's inappropriate, but my mother wrote what I think is a FABULOUS guest post on my blog about her experience as a CF mom for 28+ years and all those dreaded "CF Milestones." I just wanted to post the link...

Hey all, Since she posts here too, I just wanted to let everyone on this board know that Leah got her call yesterday and it was a go! She came out of surgery last night and is already extubated and has even made a post to her own blog. For those interested in following, her husband is...

Hey guys, I'm sure this has been asked before about a million different ways, but I was just wondering if some of the post-tx'ers would mind sharing their "waking up" stories? I find that this what I'm most nervous about right now, just the uncertainty of what things will be like when I wake up...

So, I am trying to build back up my endurance after being sick so much this winter/spring. This is one of the few areas that I have a little conflict with my doctor on, because she actually thinks I've been working out too much (she's concerned about calories and my O2 level, which I get). She...

I checked in today at Columbia Pres for the next few days, then will go home on IVs. I guess this isn't such a bad deal - it is only my second hospitalization this year and the first was actually for appendicitis rather than CF. But this marks IV #6 since January 2008. Basically once every other...

Okay, I have to admit that I stole this idea in part from Skye's recent blog post title - "the art of drowning" (very poetic and cool, btw) - and also in part from the recent discussion of CF commercials, but I've noticed a lot of people seem to compare CF, or fighting CF, to drowning. I've also...

Hey guys, I read on Nate and Tricia's blog about a young 12 year old Cfer named Haley Palmer. I am sad to report that she passed away today from complications. I refuse to say that she "lost" her battle with CF because it is clear she fought long and hard, and I can't imagine that with a fath...

My tx center doctor just called me to say that my blood test results showed a "low positive" for hepatitis C at my tx evaluation. He says he is almost certain it's a false positive (he said 3% chance of being real) because chronic infections can lead people to develop antibodies that show up on...

So I had my initial tx evaluation this afternoon with the wonderful team up at Columbia Pres. I'm scared sh-tless and exhausted right now, but otherwise feeling pretty good about the whole thing. My entire fam was in from colorado and we all LOVED the dr, which is so important. And we got all...

So I went to clinic this morning and my pfts (fev1) were up from my baseline 36% to 40%! NOt only that but I have gained weight and am feeling great. I credit the AL study for this. I just managed to get on under expanded access this past february and I feel like a whole new person! I still...

I know you all don't want me subjecting you to my mediocre poetry, but I wrote this after an incident at work today. As background, I'm a lawyer at a firm on Wall St. so it's pretty intense, but I LOVE my job. 99% of the time my firm is totally understanding about CF and I'm very honest and...

So I have my initial evaluation scheduled for May 9th. I am trying to get on the inactive list (my lung function is still around 38% on average), but I'm still nervous about the testing. Anyone have any advice on what sorts of questions to ask, what to be on the lookout for in a good tx center...

Okay, just a quick little trend I've noticed, not at all on this site, but in general... The other day someone found out I had CF and, rather annoyingly, reacted by saying "wow, you're so old!" First of all, I'm not "old" even by CF standards. I'm 26. But I consider myself lucky, I realize I've...

I know I've been posting here a lot lately - to be honest this place has become one of my best support systems, so thanks! But I just have to say: I've had a REALLY rough winter (two pneumonias, 1 partial lung collapse, the flu and appendicitis just this year, and it's only April!), so I'm...