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This page shows you the most recent publications within this specialty of the MedWorm directory. This is page number 8.

Looking for an old friend with CF please help
Hi, My name is John Dombrowski, I am looking for an old friend of mine who has CF. His name is Jimmy Cobb. He lived in Augusta Georgia Between 1980 and 1990. I know he was from Montana because he always talked about it. He went to Butler Highschool in Augusta and Morgan Road Middle school. I know we began to loose touch around 1993 and last known contact was 1994. He did spend some time at the CF center of Emory Hospital in Atlanta and also spent some time at a CF center in Northern Florida.    I have done some research into finding him and I came up with a James Cobb who passe...
Source: Cystic Fibrosis Adults Forum - May 18, 2012 Category: Respiratory Medicine Authors: Skiftcky Source Type: forums

Having another baby
We are discussing having another child, Lucas is on this kick lately that he wants a sibling..he says baby Sister. He even told my mom (my mom was picking on him bc i have a bottle of smironoff in my fridge) she told him she was gonna beat my butt because i drank it, and he yelled "Nu uh because mommy and vaul tryin to have a baby" lol we laughed. I have no idea where that came from or HOW my five year old knows that you can't consume alcohol while pregnant. Surprising to me. I got into my new clinic and i LOVE it. and the dr was impressed with what he observed and told me if i ever wanted ...
Source: Cystic Fibrosis Adults Forum - May 18, 2012 Category: Respiratory Medicine Authors: Vampy Source Type: forums

my son is just out of hospital
Hi all my son was addmitted for 1st lot of 2wk iv's and a bronc He has boarderline sweat tests and 1gene found upto now if there is even another. hes been treated for asthma since a baby. The 2 weeks went well got a lot of stuff out started nebs and physio which is helping him loads all new to us as we have always just treated him for asthma! Anyway the bronc found that he had a lot of stuff stuck down there in his lungs and that his middle right lobe was narrow... Since the 2wks ...
Source: Cystic Fibrosis Families Forum - May 18, 2012 Category: Respiratory Medicine Authors: katie4byz Source Type: forums

free genotyping to certain races/ethnicities at stanford
  Stanford University is offering free cystic fibrosis genotyping of the CFTR gene to eligible non-Caucasian, non-Hispanic CF patients. This clinical service is being funded by the CF Foundation (CFF), a nonprofit donor-supported organization that funds and accredits CF-related programs and research. <span style="font-family: 'Arial','sans-serif'; color: bl...
Source: Cystic Fibrosis Adults Forum - May 17, 2012 Category: Respiratory Medicine Authors: musclemania70 Source Type: forums

Fertility question about my son DDF508 mutation
We found out my son had CF at 4 months.  He will be 16 in 2 weeks.  We just learned he has the DDF508 mutation.   I tried to research this answer and I see a lot of different answers out there.  I know there is no clear way to answer as well because I know that each individual is different.  I know some men that have CF and they have natural children (actually I know two personally).  I also understand that its quit possible that he does not even have a vas deferens gland.   But, I will go ahead and ask an...
Source: Cystic Fibrosis Pregnancy Forum - May 16, 2012 Category: Respiratory Medicine Authors: Allansarmy Source Type: forums

Weight
Hello all,  I've recently lost about 30lbs in the past 7, or so, months. I went from 107 to 75. Now, keep in mind, this is 4 1/5 years post double lung transplant.  Before my transplant, I was 4'10", and weighed 85lbs. I couldn't gain weight at all before transplant. After transplant I gained well over 40 lbs and got up to 130lbs but got told by my doctors to lose some weight so I wasn't overweight for my height.  In October 2011, my health changed drastically, and with my lungs working much harder and havi...
Source: Cystic Fibrosis Adults Forum - May 16, 2012 Category: Respiratory Medicine Authors: kallaart Source Type: forums

M abscessus
I've culturued m abscessus 3 times in the past 4 years or so.  I have a repeat embolization next week for hemoptysis and my doc thinks that if the bleeding comes back quickly we may need to consider treating the NTM.  I got my senstivities back from the Feb culture that grew it and there are only a handful of sensitive drugs.  (Clarithromycin, Kanamycin, Amikacin) and then a handful of intermediate senstivities.  The thought of an extensive time on abx is upsetting.  For those of you who have gone down this path -- does it alway...
Source: Cystic Fibrosis Adults Forum - May 16, 2012 Category: Respiratory Medicine Authors: jmiller Source Type: forums

"The Power Of Two" Will Be Available Everywhere In the U.S. Starting June 5
CF adults and friends: I am pleased to announce that, starting Tuesday, June 5, 2012, “The Power Of Two,” the award-winning documentary about twin sisters with CF will be available everywhere in the U.S.A. on cable/satellite TV through Video On Demand as well as on PCs, smartphones, tablets and game consoles through digital download.  ABOUT THE FILM: “The Power Of Two” offers an intimate portrayal of the bond between half-Japanese twin sisters Anabel Stenzel and Isabel Stenzel Byrnes, their lifelong battle with cystic fibrosis, ...
Source: Cystic Fibrosis Adults Forum - May 16, 2012 Category: Respiratory Medicine Authors: AndrewByrnesCA Source Type: forums

Chat Reminder..
8PM EST ..  Hope to see you there  <img src="i/expressions/face-icon-small-smile.gif" border="0">  joni
Source: Cystic Fibrosis Adults Forum - May 16, 2012 Category: Respiratory Medicine Authors: BelEAche Source Type: forums

Partner's son has cf?? looking for advice
Hi, and I really appreciate you reading this post. I'm at a bit of a loss as I don't really know where to turn. Even if you just read this that will help me to know my feelings are normal. I hope xxxx I have recently fell in love. My partners son has CF and was diagnosed as a baby. He is 7 now and such a brilliant, wonderful active kid, and I adore him. To be honest I didn't have any clue what cf was about until I met him, then I started reading up about it. Many long days/night trying to find out as much information as I could. I adore m...
Source: Cystic Fibrosis Families Forum - May 15, 2012 Category: Respiratory Medicine Authors: totallynew30 Source Type: forums

New CF diagnosis
Hi.  Our daughter was diagnosed a few weeks after birth.  Her sweat chloride results were fairly normal, but due to two mutations, she has been given a cf diagnosis.  We were completely shocked, as there is no family history.  We are still very overwhelmed with all there is to learn.  She is three months old today and is growing and gaining weight without difficulty.  Her lab results from her first "official" visit to a cf accredited care facility were all good, until we got the sputum results, which showed abundant growth of H Influenza.&...
Source: Cystic Fibrosis Families Forum - May 15, 2012 Category: Respiratory Medicine Authors: Emersonsmom Source Type: forums

MRSA
My daughter is one year old and in addition to pseudomonas recently cultured mrsa as well. We've tried bactrim, Hibiclens washes and mupirocin nose ointment twice daily during the period of 3 weeks but it didn't help. Can anyone share the protocol that worked to eradicate mrsa?
Source: Cystic Fibrosis Families Forum - May 15, 2012 Category: Respiratory Medicine Authors: bubbleville Source Type: forums

Bloating
I thought it was male-pattern middle age weight gain, but a gastroenterologist diagnosed it as gas induced bloating. My belly has become more and more distended over the last six months. There's no pain involved but it's embarrassing and shirts don't fit me as well. Any tips on how to treat and beat this? I took a course of Xifaxan without much success.
Source: Cystic Fibrosis Adults Forum - May 15, 2012 Category: Respiratory Medicine Authors: guitarboy Source Type: forums

Looking for a pink pulse ox
<img src="i/expressions/face-icon-small-smile.gif" border="0"> ..im also curious to know where you can get cute pouches to go with them i love leopard print lol any suggestions? Thanks!
Source: Cystic Fibrosis Adults Forum - May 15, 2012 Category: Respiratory Medicine Authors: carly23 Source Type: forums

Anybody try a dairy-free, gluten-free, sugar free diet?
My wholistic doctor recently recommended a dairy-free, gluten-free, sugar free diet as a way of improving my overall health and reducing GI issues. Has anybody tried it? If so, what are your thoughts about it? It sounds good on paper, but looks like it maybe hard to stick with it.
Source: Cystic Fibrosis Adults Forum - May 15, 2012 Category: Respiratory Medicine Authors: AmyMaz Source Type: forums

O2 sats
Hello, I'm in the hospital for a sleep study and my o2 sat has just been measured and it's 92-93% while awake. I'm devastated, as now I'm sure that it's too low and it will lower in my sleep. Now I have a few questions: 1- will I necessarily need oxygen when flying, if I need it at night? 2- can o2 sats ever improve (via exercise, meds, healthier lifestyle...) or once it goes bad, it never goes back? 3- does this necessarily mean I should list myself for transplant? My fev1 is 35% and hasn't changed for many years. I've had 2 rounds of IVs in my life. Thanks for the help. Feel free to ask questions.
Source: Cystic Fibrosis Adults Forum - May 15, 2012 Category: Respiratory Medicine Authors: nocode Source Type: forums

Motivating Others
  Seems like a lot of people come here to get advice or get motivated.  Let’s make this posting do both.  I want all of you to come post what you like to do to keep healthy.  It can be anything from dancing, running, or whatever you do, there is nothing too small.  Talk about why you do it and how it makes you feel when you’re done.  This isn't just for the people with CF it is for everyone.  &...
Source: Cystic Fibrosis Exercise and Fitness Forum - May 14, 2012 Category: Respiratory Medicine Authors: RunningMan Source Type: forums

I Am New to Everything
My name is Jasmin and I have a baby boy named Lucas.  At birth he had meconium ileus and needed a laparotomy to irrigate his colon, nothing was removed.  At 4 months it was disovered that he has a milk protein allergy and we switched him to Alimentum.  He has been hovering around 14 pounds since then.  He is currently 7 months old. We were admitted at UCLA over a week ago for low albumin, which was 1.  He had intermittent swelling in his eyes, which led our pediatrician to think he was losing protein somewhere.  Liver and kidneys checked out ...
Source: Cystic Fibrosis Families Forum - May 14, 2012 Category: Respiratory Medicine Authors: riehlism Source Type: forums

OK to take nebulizer to work at accounting office?
Do you think it would be OK to take nebulizer to work at an accounting office and use it in the file storage room? People come to the file storage room sporadically throughout the day to get files. Does anyone else take a nebulizer to work for 15 minute treatments?    
Source: Cystic Fibrosis Adults Forum - May 14, 2012 Category: Respiratory Medicine Authors: swt7900 Source Type: forums

Aerovanc for MRSA
http://www.savarapharma.com/news_Ph1a.html   Thought this was interesting as there is no approved inhaled treatment for MRSA in lung
Source: Cystic Fibrosis Adults Forum - May 14, 2012 Category: Respiratory Medicine Authors: Rebjane Source Type: forums

Profile was deleted cause apareantly it was fake? Ive been a member for 3 years
Hi, So my profile carly23 was deleted acording to someone on here who i wil be messaging said my profile was fake?..how can you tell when someones profile is fake when there asking for advice regarding a situation there facing and need advice?..im pretty upset about this cause i was also in the middle of helping someone with a little boy who needed schandi shakes and i have 30 of them..but no cause my profile was deleted i have no way to find this person she sent me her adress everything..pretty upset about this would like my profile re activated
Source: Cystic Fibrosis Adults Forum - May 14, 2012 Category: Respiratory Medicine Authors: Carly25 Source Type: forums

VOTE PLEASE so that CF girl can participate in Marathon and raise awareness!
Can every one please vote for Jillian Mc Nulty ! Running for CF, and a personal challenge of a lifetime. Just a few hours left. <a href="http://spartan.spar.ie/s/laDWiq1FihUonbXS3RFpd9oYMmlz9bVA" rel="nofollow nofollow" target="_blank">http://spartan.spar.ie/s/laDWiq1FihUonbXS3RFpd9oYMmlz9bVA</a>
Source: Cystic Fibrosis Families Forum - May 13, 2012 Category: Respiratory Medicine Authors: Alync91 Source Type: forums

Happy mother's Day!!
Happy Mothers Day!!!  To everyone with CF who is a mom, and all mom's with kids who have CF.  And anyone else who happens to peruse this board  : ) 10 years ago, I received my first Mother's Day card.  It was a bit weird since officially we had signed the papers, and my husband had met our new daughter, but I had not.   Officially, I was a mom, but it sure didnt feel like it.  It was a surreal day.   Two weeks later, our daughter came home to us from Azerbaijan.  THAT was one of the most amazing d...
Source: Cystic Fibrosis Families Forum - May 13, 2012 Category: Respiratory Medicine Authors: Momto2 Source Type: forums

VOTE PLEASE!
Can every one please vote for Jillian Mc Nulty ! Running for CF, and a personal challenge of a lifetime. Just a few hours left. <a href="http://spartan.spar.ie/s/laDWiq1FihUonbXS3RFpd9oYMmlz9bVA" rel="nofollow nofollow" target="_blank">http://spartan.spar.ie/s/laDWiq1FihUonbXS3RFpd9oYMmlz9bVA</a>
Source: Cystic Fibrosis Adults Forum - May 13, 2012 Category: Respiratory Medicine Authors: Alync91 Source Type: forums

Centers in TX
It has been suggested to my son that we start the evaluation for transplant.  Does anyone have any experience with centers in Texas.  Any information would be appreciated. Thanks, Mom to 3, 2 with CF
Source: Cystic Fibrosis Transplants Forum - May 12, 2012 Category: Respiratory Medicine Authors: farmfamily Source Type: forums

J-tube leaking
I had a J-tube placed in February and despite the ridiculous ordeal that turned into, it's been awesome in helping me gain weight. I no longer look disgustingly emaciated. Woo! Anyway, the tube site itself is constantly leaking. It's not a lot, but enough where I have to constantly wear a bandage which adds even more bulk and takes even more time out of my day. The docs say it's healing and takes a while - but didn't really give me any sort of time frame. I was wondering if anyone has a similar problem and how long their site took to heal enough where it wasn't leaking all the time. 
Source: Cystic Fibrosis Adults Forum - May 12, 2012 Category: Respiratory Medicine Authors: kayers3 Source Type: forums

Cayston users
Hey cayston users im gonna need your help! My doctor is considering to put me on Cayston so i have some questions! 1 Do you use it like Tobi? One month on one month off? 2 Do you use Tobi on your month off? 3 Do you think Cayston helped you? How is your PFTS? Do you feel better in general? Do you cough much? ( I cough too much using Tobi) Thanx in advance!
Source: Cystic Fibrosis Adults Forum - May 12, 2012 Category: Respiratory Medicine Authors: bigstar Source Type: forums

Daptomycin Help"
I am on week three of a six to eight week treatment of Daptomycin for sepsis and bactermemia. Has anyone on here been on this drug before? I am concerned with a few things. One in the PDR it says the stability of the Daptomyacin is on 48 hours once it is reconstituted which means the drug is only good for 48 once it is in liquid form. My home infusion company has given me seven day supply, telling me it is good for ten days. I tried calling the drug company but with it being the weekend, they are closed. Has anyone been on this at home before, if so how many days supply did you get at once. I called the pharmacist wher...
Source: Cystic Fibrosis Adults Forum - May 12, 2012 Category: Respiratory Medicine Authors: JennifersHope Source Type: forums

Daughters Throat Swab POSITIVE for first time ever :(
Any one know anything about this? CF clinic said they are just going to monitor it for now. 
Source: Cystic Fibrosis Adults Forum - May 11, 2012 Category: Respiratory Medicine Authors: samb Source Type: forums

Need thoughts on GI issues for 34 month old CF
DS will be 3 in June.  Since 6 months he's had GI issues.  One hospitalization for IDOS, although from later conversations drs don't know for sure it was that.  Prior to that he had constipation with marble poops, etc..  After release he started eating solids like crazy, gained a couple pounds in a month etc.  Then his intake went down, more acid reflux, more vomitting, pooped watery, or explosions with little chunks, stomach sounded like a drain with draino, balooning stomach, etc etc.  Xrays showed copious stole and gas, so upped the meds, cleaned o...
Source: Cystic Fibrosis Adults Forum - May 11, 2012 Category: Respiratory Medicine Authors: Aboveallislove Source Type: forums

Any Canadians on here?
Are there any Canadians on here? Anyone read this on the Canadian CF site? http://www.cysticfibrosis.ca/assets/files/pdf/VertexCommunique_1%20May2012_E.pdf Mentions up to a 2 year wait for Kalydeco to be approved in Canada- we have to petition this- this is ridiculous- by the time 809 is approved in the States we will just be getting Kalydeco! We need to band together to get this drug here faster. Please post here or PM me if you are interested!
Source: Cystic Fibrosis Adults Forum - May 11, 2012 Category: Respiratory Medicine Authors: cfsucks Source Type: forums

Becoming a surrogate for my sister
Hello everyone,  my sister just recently recieved a double lung transplant about 3 weeks ago. So far she's having an amazing recovery, and I'm really excited for her and her future. She's been wanting kids for years and has tried for so long, but never successfully got pregnant. Now that she's had transplant the chances of her getting pregnant seems more unlikely (or does it?) Anyway, I would love nothing more than to be her surrogate. I was just wondering if it's possible for her to give eggs? Does anyone know the process?<br /...
Source: Cystic Fibrosis Pregnancy Forum - May 11, 2012 Category: Respiratory Medicine Authors: MsBumba Source Type: forums

A late achiever's blog
Hi all! Perhaps I should start with why I want to write a blog given that I'm not even a medical student (yet!). I'm hoping that my experiences in the build up to my application will be helpful to others in the same position, and I also hope it might be somewhat amusing to those who are already medics or medical students and who wish to laugh at my potential failure. I'll start off with this post with the most basic of blog posts: who the hell am I, and why should you read the potentially long and drawn out posts I'm going to make? My name is Matt, I'm originally from Nottingham but I currently reside in Manchester as I...
Source: New Media Medicine - May 10, 2012 Category: Universities & Medical Training Authors: MattKneale Tags: Weblogs Source Type: forums

Creon capsules with microspheres not working
Hi, I'm new to the CF Forums.  My son has not been officially diagnosed, but there is high suspicion for CF.  He is currently 7 months old.  The plan is to treat him as if he has CF, until proven otherwise. He has to take Creon capsules with microspheres with every meal and he hates it.  He harbors them in his mouth and we were told he can't do that because of the potential for burns and sores.  We were told there used to be a powdered version on the market that has now been discontinued.  We were also told we could not crush the be...
Source: Cystic Fibrosis Families Forum - May 10, 2012 Category: Respiratory Medicine Authors: riehlism Source Type: forums

Lactose intolerant?
So I am going to call my doctor today, but I wanted to see if anyone of you have this problem.  The last few weeks I have been feeling very bloated and gurgly in my stomach (I posted about it a few weeks ago, thinking I may be pregnant.) Long story short, I still don't have a postive home pregnancy test, but I am seeing my OB next week, so she said to wait til then and she will test.   But in the last few nights, I have had an additional symptom.  After dinner, I had REALLY bad cramps in my left side between my rib cage and my hip bone. &nbs...
Source: Cystic Fibrosis Adults Forum - May 10, 2012 Category: Respiratory Medicine Authors: MCGrad2006 Source Type: forums

Does your electric steam sterilizer melt the following equipment?
I've melted the mouthpiece of one nebulizer and my aerochamber (mouth portion only).  Neither incidents were tragic, since the neb was cheap and the aerochamber still works. However, I've been thinking of thowing my acapella in the steam sterilizer, rather than soaking it in alcohol once a week.  I prefer the cloudy green one, but I also have the clear green one (the "Choice") http://www.smiths-medical.com/catalog/bronchial-hygiene/acapella/acapella.html http://www.smiths-medical.com/catalog/bronchial-hygiene/acapella-ch...
Source: Cystic Fibrosis Adults Forum - May 10, 2012 Category: Respiratory Medicine Authors: Melissa75 Source Type: forums

Lost Job due to CF
Hi, I worked for an agency that really doesn't like people to be "sick" or have a diagnosis. I filled out FMLA papers for intermittent leave and disclosed that I have CF (i the section the dr signs). Little did I know there is a law that you do not have to disclose genetic information to employers called the GINA law <a href="http://www.eeoc.gov/laws/types/genetic.cfm">http://www.eeoc.gov/laws/types/genetic.cfm</a>).  The employer has violated numerous sections of this law. Soon after turning in the FMLA papers I started being harrassed for bull. In the end they conjur...
Source: Cystic Fibrosis Adults Forum - May 10, 2012 Category: Respiratory Medicine Authors: LTA Source Type: forums

Anybody ever use a steam mask?
Has anybody ever used a steam mask. For years I have used steam rooms in the local gym after my work out, and they have been beneficial. Lately though, I have become worried about infection in public steam rooms. My cousin recommended a steam mask to help when it is hard to breathe. She has asthma and not CF.
Source: Cystic Fibrosis Airway Clearance Techniques Forum - May 9, 2012 Category: Respiratory Medicine Authors: baseballfrank Source Type: forums

MediCARE participants who receive home infusion services
If you get your home IV/infusion services covered by MediCARE please tell me which part covers it? A,B,C or D I have been told that Medicare does not cover home infusion AT ALL. Thank you for your help!  
Source: Cystic Fibrosis Adults Forum - May 9, 2012 Category: Respiratory Medicine Authors: musclemania70 Source Type: forums

To the "chubby" CFers
Hi all, something has been in the back of my mind recently, and more so, reading about people on this site with struggles to maintain their weight. I have also struggles maintaing my weight, but not gaining weight, but trying to keep the weight off! My pulmo has not mentioned anything about it, but I have talked to my diestist and she has given my some diets to try to lose weight, and sometimes I do, but then gain weight again. When I see her, she asks how's my weight, not thinking about that I am not on of those CFers that she needs to ask that question.</p&g...
Source: Cystic Fibrosis Adults Forum - May 9, 2012 Category: Respiratory Medicine Authors: gunelle Source Type: forums

G551 mutation w/ ABPA...on Kalydeco? How's it going?
Are there people out there with the G551 mutation who have ABPA that are now taking Kalydeco?  Or are about to?  Very interested to hear your comments. 
Source: Cystic Fibrosis Asthma, Allergies and Green Forum - May 8, 2012 Category: Respiratory Medicine Authors: Coolcfdad Source Type: forums

Will VX809/770 be effective in reducing mucous production?
I have read a lot about the new drug and I am extremely excited. My question is will VX809/770 be effective in reducing mucous production? I think it will based on the fact that it fixes the sodium problem. There is a lot of talk about FEV improvement, but I haven't seen anything on whether it will reduce the phlegm production in the body. I am 50 and my FEV isn't too bad. My problem is as I get older, the amount of phlegm my body produces is ridiculous. I have no problem getting it out because I do all my treatments and I exercise a lot.  The problem is the volume my body pro...
Source: Cystic Fibrosis Adults Forum - May 8, 2012 Category: Respiratory Medicine Authors: baseballfrank Source Type: forums

Do any of you still feel your lungs shaking
My 9 year old finished her Vest and sat down on the couch and said I am still shaking, I assume she means her lungs inside.  Just curious if any of you have had that sensation.  She came down with yet another cold, so I wonder if it's more noticeable when she has extra mucous?
Source: Cystic Fibrosis Adults Forum - May 8, 2012 Category: Respiratory Medicine Authors: Rebjane Source Type: forums

Need Reccommendations
Ive been greatly symptomatic for over a year. Previous to this I would get infections and have stomach upsets and manage meds but doctors didnt find it concerning. Alot has gone far down hill since then. Im pretty clueless about all of it. Ive been trying to find a decent doctor for a long time and think I finally found one but have a bit more testing to do before a new treatment plan can be determined. So my immediate concern is that I have around 6 bowel movements a day and no matter how much I eat I keep losing weight. I lost 20lbs over the last month. My primary care was handling this while I was in limbo with...
Source: Cystic Fibrosis Adults Forum - May 8, 2012 Category: Respiratory Medicine Authors: muchlove Source Type: forums

VX-661 Phase 2 Study
"Combination Study in Most Common Type of CF: Vertex is also conducting a Phase 2 study of the CFTR corrector VX-809 dosed in combination with KALYDECO in people with the most common CFTR mutation, known as F508del. Final data from this study are expected in mid-2012. The study enrolled people with two copies of the F508del mutation (homozygotes) and also included the first evaluation of KALYDECO combined with VX-809 in people with one copy of the F508del mutation and one copy of cert...
Source: Cystic Fibrosis Families Forum - May 8, 2012 Category: Respiratory Medicine Authors: natureimpulse Source Type: forums

CF Siblings- where are you?
Hello Everyone,   My name is Hailley and I am 27 and I currently live in Oakland.  I had 2 sisters with CF, one who died at 17 in 2004 and one who died at 25 in 2008.  I am the middle child. I have not met a well sibling of a CF patient who has passed in my life and I wrestle with even wanting to.  AT this point in my life I would really like to meet someone who could directly relate to what it is like to grow up in a household with CF siblings, to watch them die, to cope with being "the one who lived," etc.&...
Source: Cystic Fibrosis Families Forum - May 8, 2012 Category: Respiratory Medicine Authors: Hfield Source Type: forums

Can somebody tell me...
My daugher Laci is 6 years old and has CF. She was diagnosed when she was exactly one month old. Her doctor's told me that she has 2 copies of the Delta f508. I don't really understand what that means. What is the difference between somebody having 1 or 2 copies of something? If she has 2 copies is she worse off, better off, the same? Can anybody help me understand this? Thanks in advance!   -Lindsay
Source: Cystic Fibrosis Families Forum - May 8, 2012 Category: Respiratory Medicine Authors: laciandgabesmumma Source Type: forums

Children affected by CF
Anyone know the background story for this link from CNN? <a href="http://cnnphotos.blogs.cnn.com/2012/05/05/children-affected-by-cystic-fibrosis/?hpt=hp_bn12">http://cnnphotos.blogs.cnn.com/2012/05/05/children-affected-by-cystic-fibrosis/?hpt=hp_bn12</a>
Source: Cystic Fibrosis Families Forum - May 8, 2012 Category: Respiratory Medicine Authors: point Source Type: forums

New Study of Kalydeco and 809
So I have a question.  I spoke with my doctor about this drug trial (maybe a month ago, and also 3 months before that) and he told me I was NOT eligible.  I have ONE Deltaf508 (and N1303K).  In the piece I just read on the trials it said they were doing trial of people with 1 or 2 copies of deltaf508.  Why would my doctor tell me I am not eligible?  Does the second gene have to be a certain "class"?  I would really like to educate myself more so that when I go to see him in June, I can argue my case.  I really want to do some of these trials....
Source: Cystic Fibrosis Adults Forum - May 8, 2012 Category: Respiratory Medicine Authors: MCGrad2006 Source Type: forums