Country Concert for Cystic Fibrosis

Rallying the troops…. we need to get together on this

dramamama — Wed, 23 May 2012 18:14:16 +0000

Originally posted in Cystic Fibrosis - Adults

Hi everyone~

I have some crazy news that I think we all need to be aware of as we go forward in our agreement to take the vertex drugs. I had become increasingly concerned about CFers getting sick and experiencing more exacerbations as the vertex drugs were being discontinued after Phase II trials. While the vertex scientists are not all doctors, some of them are and I feel and felt like they were completely falling away from one of the principal precepts of medical ethics taught to doctors: First, Do no harm. Yes, the drugs are life-changing in a positive way (a cure even) and, for this reason, are harmful when discontinued.

Because of this I contacted a top 25 Lobbyist in Washington to just see if there was anything he could do to help us atleast get the patients who are volunteering a pass to continue the drugs when the phase II trials end (seeing as there is no glaring safety concern). While he had never heard of this issue with CF patients, he was very aware with all going on with Vertex and CF. He graciously contacted the Deputy FDA commisioner and addressed our concern….

According to the Deputy FDA commisoner: there is no FDA law keeping these patients from receiving these drugs following Phase II trials!!!! WHAT??? VERTEX has complete control and authority to allow these patients access to these drugs. Now, keep in mind, that is not all of us, but can we not agree that our community should stand behind these patients who are agreeing to take these drugs!?

According to the LOBBYIST, he said we must all rally together and agree to NOT SIGN up for trials, unless it is written in the contract that the trial patient is able to remain on the drugs after Phase II ends. We have the power. Vertex needs us just like we need them…. They can't get paid unless we agree to be a part of this… it is ok to stand up for ourselves in this way….sometimes the boat needs to be rocked.

Along those same lines, there is a bill going through Congress right now with approval (they think) by October that will allow drugs that are life changing to have a very different course of review and trial period. It is called the Advancing Breakthrough Therapies for Patients Act…. Basically, this allows companies to expidite clinical trials so that patients can get access to drugs possibly after Phase II trials. The company will have to conduct phase III trials even while patients have access to the drugs. GUYS, IF THERE WAS EVER A TIME TO CALL YOUR CONGRESSMAN IT IS NOW. The ExPert Act is also important, but the other will allow drugs to reach us much more quickly.

And, Finally…. Do you know how powerful our words are?? One of the reasons that Vertex released interim results from the 770/809 Phase II trials was due to the fact patienst were blogging and Vertex could no longer control what information was being released. From the CFO of Vertex at the Deutesche Bank Securities Annual Healthcare Conference last week:

"The safety finding was very strong and we want to accelerate the program into a Phase III setting. For us to do that we have to talk to regulators both in the US and Europe. We have to talk to trial investigators, patients are now blogging regarding the results and there was a corporate concern here about information getting out of the company and not being in a controlled environment. That is what drove us to the announcement"

It is time to make our voices heard… They need us as much as we need them.

read about the BILL:

http://articles.chicagotribune.com/2012-05-09/news/sns-rt-drugs-breakthroughl1e8g8a89-20120509_1_cancer-drug-drug-regulators-approval-of-breakthrough-drugs

Anesthesia issues?

SIcklyhatED — Wed, 23 May 2012 18:14:15 +0000

Originally posted in Cystic Fibrosis - Adults

Something I've always wonderd, does CF have an affect on anasthesia? Do we metabolize it faster/different? The reason I ask is 3 times I've had anasthesia "issues" (well, I call them issues…). Time #1 and #2 I was getting a bronchoscopy and I bit down on the scope. The first time they had to give me a ton of extra anasthetic to get my jaw to relax and I was bed bound for 3 days with a massive headache and dizzyness. The 2nd time I dented the scope. Oops. The #3rd instance, I was getting my 1st PICC placed and it was one of the worst things I've ever experienced. They said they'd knock me out completely (crappy veins) and I felt everything and was kicking but couldn't speak, and woke up crying.

I'm not exactly a big person either. 5'1 120lbs so it's not like it should take a lot to knock me down…. but apparently it does.

Anyone else? Or am I just a weirdo?

Liver Issues

TonyaH — Wed, 23 May 2012 17:07:09 +0000

Originally posted in Cystic Fibrosis - Adults

Andrew was just discharged after a 5 day admit to get started on iv therapy. While there initial labs (before meds were started) showed increased liver function. This has happened before, but only after he has been on antibiotics, not before they even started. They ran a liver ultrasound while we were in the hospital and it did show an enlarged liver and spleen, but nothing the doctors felt needed treatment yet..

I was just curious as to others who have had frequent high liver function lab results and enlarged liver on ultrasound..how high were your numbers? Andrew started off like three times the normal limit for liver enzymes, GGT, alk phos, etc.,. Second lab results showed lower, but still elevated numbers. I'm just wondering if this is something other clinics would treat, or if these results are typical of a watch and wait plan.

We have a great team…just curious what others have done and what the outcome has been.

Thanks!

acinetobacter baumanii

rvm1212 — Wed, 23 May 2012 17:07:08 +0000

Originally posted in Cystic Fibrosis - Adults

Hi,

My husband has acinetobacter baumanii in his last sputum culture. He used to only culture s. aureus that has been treated with oral augmentine and he has a pretty good fev (around 85-89%%). He is 40 diagnosed as an adult (33). He had some cough increase lately due to a virus we all had, and he was started on augmentine. He took a sputum sample to the lab before starting the treatment (white sputum). He has been on augmentine (oral) for five days and is doing very well. The cough has almost disapear, but his culture came back positive for s. aureus and acinetobacter baumanii. I am very worry about the acinetobacter. Any one has culture it before?. How has it affected your health?. Have you been able of erradicate it or it keeps coming back in your cultures?. The doctor says that since his is doing so good on augmentine, (which the acinetobacter is resistant to), he doesn´t think is playing a big roll in his exacerbation, and he said we will just take another sputum sample and if it still comes back positive will treat with oral ciprofloxacin for two weeks, if not he won´t treat it. But I´m worrying myself to death since it seems to be a very nasty bug.

Can you please give me some insight?. Thank you very much. !!!!

Looking for a CF Center in Northern NJ or NYC

momofmia — Wed, 23 May 2012 16:14:52 +0000

Originally posted in Cystic Fibrosis - Diagnosis

I am searching for a CF center for my 15 year old daughter who has just been diagnosed. She has M470v an 7T/7T. Her physicians said her variants an polymorphisms have nothing to do with her illness. They just Rx'd HyperSal and Pulmozyne due to her Bronchiectasis, and constant productive cough and fevers. She also has chronic sinus infections,ear infections and thank goodness no GI symptoms. I want to make an appointment ASAP. We are also going for her Nasal Potential test as soon as school gets out for the summer. Could someone please recommend a reliable center for that? Her 3 sweat tests were negative at 3, 4 and 32.

I appreciate any advice you can offer.

Lisa

mom of an amazing 15 year old daughter. w/ bronchiectasis, chronic sinus infections, ear infections. M470v and 7T/7T.

New CF Clinical Trial Alert Tool

LisaGreene — Wed, 23 May 2012 13:12:16 +0000

Originally posted in Cystic Fibrosis - Adults

Here is something new and interesting from the CFF:

To help keep the CF community informed about CF clinical trials, the Foundation recently launched a new online tool that generates an email alert whenever new CF clinical trials and trial results are posted. Please share this news with your patients and families and sign up today at www.cff.org/research/ClinicalResearch/Find/ClinicalTrialAlerts

O2 sats

nocode — Wed, 23 May 2012 09:53:27 +0000

Originally posted in Cystic Fibrosis - Adults

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.

What’s a healthy weight?

Musicgirl — Wed, 23 May 2012 05:24:48 +0000

Originally posted in Cystic Fibrosis - Adults

Hiya
Just wondering the height and weight of some of you cfers
and what's a good weight to be.
Iv spent ages trying to get my weight up and the doctors still want it higher haha!

I'm 16 years old 157cm and 60kg

CF Fundraiser… This Thursday May 24TH.

beleache — Tue, 22 May 2012 23:40:49 +0000

Originally posted in Cystic Fibrosis - Adults

If you want some info about it check out my blog .. Hope to see some NJ folks Joni

Increasing eFlow efficiency with easyCare

Tisha — Tue, 22 May 2012 20:36:18 +0000

Originally posted in Cystic Fibrosis - Adults

Hello!

Some of you already know, for sure, but I didn't until a couple weeks ago and some other people don't know either. I remember reading a post, time ago, where somebody said after a while of using the eFlow (in particular with hypertonic saline), the nebulization time had increased so it wasn't so much better than any other nebulizer. Unfortunately I don't recall who said this, to tell her personally.

As it turns out, when nebulizing 5 ml takes longer than 4 minutes with the eFlow, it is due to the small openings in the metal part becoming clogged. The solution is a small device that cleanses it (by running 0,9% saline in counter-direction) and makes it work fast again.

My lung therapist was surprised I didn't have this small device, called easyCare. I called my provider for one and, indeed, nebulization time went down again.

Just wanted to let you know! For those that didn't know -and those who did, sorry for the redundant message.

Have a great day and use that extra time available to go out and have fun in the sun!

Tisha

Anybody try a dairy-free, gluten-free, sugar free diet?

AmyMaz — Tue, 22 May 2012 19:20:24 +0000

Originally posted in Cystic Fibrosis - Adults

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.

suggestions for a good CF center and transplant center?

Swedishstar84 — Tue, 22 May 2012 19:20:23 +0000

Originally posted in Cystic Fibrosis - Adults

Hi, I've been thinking about writeing my final exam (university) in another country Usa, Canada. any suggestions for a good CF center and transplant center? What about the possible costs of hospital stays and check up, bloodtests etc? for one who is not from Usa or Canada.

thank you very much for your answers!

Hugs /Marie

Pneumonia Vaccine Shown to Actually Increase Bacterial Infections It Is Supposed to Prevent

rmotion — Tue, 22 May 2012 05:54:39 +0000

Originally posted in Cystic Fibrosis - Adults

Pneumonia Vaccine Shown to Actually Increase Bacterial Infections It Is Supposed to Prevent

May 22 2012 |4,216views

Story at-a-glance

Certain hard-to-treat bacterial infections in children are on the rise because of the widespread use of antibiotics and the conjugated pneumococcal vaccines, including Prevnar

A report by the Infectious Diseases Society of America (IDSA) revealed that the presence of certain types of bacteria in cases of upper respiratory tract infections has “markedly increased” since the widespread use of pneumonia vaccines

Pneumonia bacterial strains may change one DNA letter about every 15 weeks, a rate of mutation similar to that of the common antibiotic-resistant superbug MRSA

The overuse of antibiotics for ear and sinus infections has also caused these pneumonia bacteria serotypes to become resistant to antibiotics

Overall, your best defense against any disease is having a robust healthy immune system

Discover What They're Hiding in Your Organic Food

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By Dr. Mercola

It's estimated that nearly one in 7 U.S. adults have been diagnosed with sinusitis in the past 12 months, which occurs when the mucous membranes in your nose and sinuses become irritated.ⁱ In most of these cases (90-98%) a virus is the cause, whereas in 2-10% of cases, a bacterial infection is also present.

These bacterial infections are becoming increasingly drug-resistant and therefore harder and harder to treat, which is why the Infectious Diseases Society of America (IDSA) recently issued new treatment guidelines for sinusitis.

Alarmingly, however, buried on page 16 of their report is the acknowledgement that certain hard-to-treat bacterial infections in children are on the rise because of the widespread use of the conjugated pneumococcal vaccines!

Bacterial Infections on the Rise Since Introduction of the Pneumonia Vaccine

The IDSA report states:ⁱⁱ

" … both the prevalence of H. influenzae (40%– 45%) and proportion of b-lactamase–producing H. influenzae (37%–50%) (extrapolated from middle ear fluid cultures of children with acute otitis media) have markedly increased among other upper respiratory tract infections since the widespread use of conjugated pneumococcal vaccines… Whereas S. pneumoniae was more common than H. influenzae prior to 2000, the prevalence of H. influenzae has clearly increased while that of S. pneumoniae has decreased in the post–pneumococcal vaccine era, such that currently they are approximately equal … "

In the United States the Prevnar vaccine, which is used to prevent pneumoccocal disease that can cause meningitis and bloodstream infections in young children, was licensed in 2000 and has been given to infants in four shots between the age of 2 months and 15 months. The vaccine originally covered seven and now covers 13 of the 90-odd strains of the Streptococcus bacteria.

Although pneumoccocal disease caused by seven pneumoccoal strains in the 7-valent Prevnar vaccine declined after widespread use, one pneumoccocal strain called 19A developed super resistance and is now causing pneumoccocal disease that is antibiotic-resistant.

In 2010, the FDA licensed a 13-valent pneumococcal vaccine to cover more strains, including 19A, in an attempt to interrupt transmission of pneumococcal disease, which is associated with over 80 different strains of pneumococcal. The health community has known for years that non-vaccine S. pneumoniae serotypes had not only quickly replaced the seven included in the original Prevnar vaccine, but were also causing invasive non-vaccine-type pneumonia to increase by 71 percent. Writing in the journal Emerging Infectious Disease, researchers stated:ⁱⁱⁱ

"In the Netherlands, PCV-7 [the 7-valent pneumococcal conjugate vaccine] offered high protection against vaccine-serotype IPD in vaccinated children, but increases of non–vaccine-serotype IPD reduced net vaccine benefits."

That's the reason U.S. officials introduced the new 13-valent pneumonia vaccine—to hopefully keep the replacement serotypes at bay. However, history suggests that both antibiotics and vaccines may be intricately involved in the evolution of pneumonia superbugs.

Pneumonia Bacteria Swapped Genes Before Prevnar Hit the Market

A new analysis by a team of international researchers revealed the complete genetic makeup of 240 samples of a strain of Streptococcus pneumonia taken between 1984-2008, which allowed the researchers to note changes over time.^iv The strain, known as the Pneumococcal Molecular Epidemiology Network clone 1 or PMEN1, is resistant to several antibiotics. There were several interesting revelations, including:

The pneumonia strain emerged when penicillin was frequently used, but because it was not killed by penicillin, it flourished

The strain changes one of its DNA nucleotides about every 15 weeks, a rate of mutation similar to that of the common antibiotic-resistant superbug MRSA

One way the bacteria mutate is with a sugar coating called a polysaccharide capsule; PMEN1 has a capsule called 23F, which was included as a target in the Prevnar vaccine. However, by the time the vaccine hit the market, the bacteria had already morphed into a new serotype called 19A, which the vaccine did not work against.

Wired Science reported:^v

"The study "illustrates that these genes are under enormous selection pressure due to human interference with antibiotics and vaccines," says Garth Ehrlich, a bacterial pathologist at the Allegheny-Singer Research Institute in Pittsburgh. Mapping the organism's past genetic contortions may not help researchers predict what the bacteria will do next, but the analysis shows that some genes are particularly prone to changes and probably are not good vaccine targets, he says."

A secondary problem is that the overuse of antibiotics for ear and sinus infections has also caused these serotypes to become resistant to antibiotics. Researchers reported in Science:^vi

"More than 700 recombinations were detected, with genes encoding major antigens frequently affected. Among these were 10 capsule-switching events, one of which accompanied a population shift as vaccine-escape serotype 19A isolates emerged in the USA after the introduction of the conjugate polysaccharide vaccine. The evolution of resistance to fluoroquinolones, rifampicin, and macrolides [antibiotics] was observed to occur on multiple occasions."

M abscessus

jmiller — Tue, 22 May 2012 01:34:17 +0000

Originally posted in Cystic Fibrosis - Adults

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 always have to be via IV? I don't have a port and don't really want one – but I imagine that's the only way if you do need IV meds longterm right?

Did any of you treat with any other alternatives? And has anyone with this also wrestled with hemoptysis? If so, did you see improvement in hemoptysis with treatment of the NTM?

We haven't addressed it up to now since the cultures have been intermittent and my PFTs haven't seemed to struggle…. but they will if I continue to bleed every two weeks!

Thanks in advance for the feedback – I appreciate the support of all of you who have walked through this!

How often are you seen in clinic?

Incomudrox — Mon, 21 May 2012 21:10:41 +0000

Originally posted in Cystic Fibrosis - Adults

Please vote.

Holy Trinity students raise money for CF

fibrosis news — Mon, 21 May 2012 20:53:32 +0000

Originally posted in Fibrosis News

The Holy Trinity Catholic Schools’ National Honor Society raised $833 for the Cystic Fibrosis Foundation in the Joining Hands Campaign.

Concentrated saline therapy not effective in young children with cystic fibrosis

fibrosis news — Mon, 21 May 2012 16:39:21 +0000

Originally posted in Fibrosis News

Inhaling concentrated saline mist does not reduce how often infants and young children with cystic fibrosis need antibiotics for respiratory symptoms, according to findings from a clinical trial sponsored by the National Heart, Lung, and Blood Institute , part of the National Institutes of Health.

Stopping cell migration may help block fibrosis and the spread of cancer

fibrosis news — Mon, 21 May 2012 15:39:05 +0000

Originally posted in Fibrosis News

Discoveries by a Yale-led team of scientists could lead the way for development of new therapies for treating fibrosis and tumor metastasis.

Bloating

guitarboy — Mon, 21 May 2012 14:50:46 +0000

Originally posted in Cystic Fibrosis - Adults

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.

Need thoughts on GI issues for 34 month old CF

Aboveallislove — Mon, 21 May 2012 14:50:46 +0000

Originally posted in Cystic Fibrosis - Adults

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 out most but still not back to normal, after 3 months until ended up back in ER with vomitting. They concluded a stomach bug, but that expediated GI and after lots of other tests they shoot in dark and did flagile. After that he did great but still not real peanut-butter consistency poops as they wanted,still a tad to watery, but other symptoms gone and no explosions with stickier stuff. Did great for 1 month and then CF appointment wanted us to cut back on supplment to get more solids, did so his poop got thicker (nice consistency), but missed a day here and there, gave more miralax, etc. never marble-hard, but he did have propblems/pain when going even when peanut butter consistency. 3 nights ago woke with horrible tummy ache and pain and draino sound back. Ditto 2 nights ago. Am working with GI to up miralax and add milk o magnesia and upping probiotic (culturelle) from 2 to 6 and checking in on Monday. Really don't want another dose of antibiotics b/c he had a really hard time–he does great on all his meds but Flagile made him vomit and dh had to hold him down and take time off work. They'd do a different one but still hoping to avoid. But does anyone have any experience or thoughts on what is going on????? Suggestions????

Weight

kallaart — Mon, 21 May 2012 14:50:45 +0000

Originally posted in Cystic Fibrosis - Adults

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 having my digestive system how it has always been(you all know what I'm talking about), I lost weight FAST! What are some ideas about gaining my weight back?

I'm getting scared of my weight because now I'm 5' and 75lbs, I look like a skeloton(at least, I think so.). I've tried eating more than my stomach tells me I can, but it gets to irritated. Some of the options I've recieved are to try eating "special" brownies.. I wasn't to fond about that option, I'm not for it. Especially if I would have to get them illegally as I was told.

Do you have any other options to try and gain weight back? I've tried eating food with high calories and such. I'm just not seeing any results, mostly because I don't eat as often or as much as I used to before.. Could it be because my lungs are working hard again? I hate going through this. I constantly hear comments about how much I eat, or how skinny I am. I want to be at a healthy weight again so these comments stop.

Please help!!

Katie

Digestive Care, Inc. Announces FDA Approval for PERTZYE

LisaGreene — Mon, 21 May 2012 14:50:44 +0000

Originally posted in Cystic Fibrosis - Adults

Here is an announcement from Digestive Care about finally getting FDA approval for their enzymes. For some people with CF, these are the only ones that work so it's been hard on alot of people over the last 2 years. Here's the announcement:

I am pleased to inform you that Digestive Care, Inc. just received FDA approval for our pancreatic enzyme Pertzye (formerly marketed as Pancrecarb). As many of you know, this has been a very challenging task for us. It took a lot of hard work from many individuals to finally clear this hurdle and we are looking forward to getting Pertzye on the market. Our product has been off the market since April of 2010 and I still receive calls weekly from many patients and caregivers wondering when we were going to get back on the market. Finally, I can give them good news!

Thanks to many of you who have supported our efforts and I look forward to seeing many of you as we go forward.

Best Regards,

Steve Berens

FDA Approval of PERTZYE

Ratatosk — Mon, 21 May 2012 14:50:44 +0000

Originally posted in Cystic Fibrosis - Adults

http://www.marketwatch.com/story/digestive-care-inc-announces-fda-approval-of-pertzyetm-pancrelipase-delayed-release-capsules-2012-05-18

Looking for an old friend with CF please help

Skiftcky — Mon, 21 May 2012 14:50:44 +0000

Originally posted in Cystic Fibrosis - Adults

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 passed away on March 4th 2008. He would have been around 39 which is how old he would have been that same year… However, I found nothing else other than a "remember" page that had nothing more than some goodbyes from friends. I pray that I'm not to late in trying to find him and if so would just like to know where I can pay my respects.

Just an FYI, I am not trying to phish for personal information or access to any ones account etc. All I ask is that if any one knows him, knew of him, or knows his family/friends to please have them contact me at: Skiftcky@yahoo.com I can be found on facebook under the same e-mail address. All I want to do is find my best friend in childhood.

Cystic fibrosis walk raises awareness, collects $21,000

fibrosis news — Mon, 21 May 2012 11:19:20 +0000

Originally posted in Fibrosis News

“Remember when I wore that pink hat and pushed that thing up and down?” my 3-year-old asked the… Sophronia Navarro, 5, of Salem, holds a sign for Team Vivian, as she walks in the Annual Great Strides Cystic Fibrosis Walk at Riverfront Park Sunday morning.

Redlands joins fight against cystic fibrosis

fibrosis news — Sun, 20 May 2012 01:02:36 +0000

Originally posted in Fibrosis News

Members of Team Khloe, walking for Khole Paine, 3, of San Bernardino, make their way through Sylvin Park in Redlands on Saturday during the Cystic Fibrosis Foundation’s Great Strides walk.

Your Weekend Planner: Quogue State of The Village Address; Great…

fibrosis news — Sat, 19 May 2012 08:24:09 +0000

Originally posted in Fibrosis News

The cost is $35 per child. 2.A Smile Train Fundraiser Yard Sale The third annual Smile Train Fundraiser yard saleA to benefit the organization “Smile Train” which performs surgeries for children and adults with cleft palates will be held onA Saturday, May 19 A from 9 a.m. to 4 p.m. atA 20 Bay Ave., East Quogue.

Pay It Forward Person Of The Week 5/18: Jamie Purchase

fibrosis news — Sat, 19 May 2012 04:14:37 +0000

Originally posted in Fibrosis News

Jamie Purchase doesn’t take her birthdays for granted. At 29, she’s beating the odds in her fight with cystic fibrosis .

Having another baby

Vampy — Sat, 19 May 2012 01:42:33 +0000

Originally posted in Cystic Fibrosis - Adults

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 to have another baby, to let him know. He would help us, so after talking with my partner, Vaul, we decided on having another baby. So we would love to know with the experiance of other CF patients what we should ask, what we should know, and any tips that would help us

We are so happy in life right now and its so amazing, beautiful new big house, lucas is home perminately and life is a blessing <3

Southbury cystic fibrosis walk set

fibrosis news — Sat, 19 May 2012 00:05:04 +0000

Originally posted in Fibrosis News

The second annual Southbury Great Strides Walk will be held Saturday, starting in at Ballantine Park at 9 a.m. with registration and activities for kids, including Valentine the clown, music, and a karate demonstration by Tribury Karate & Fitness .

Country Concert for Cystic Fibrosis

Rallying the troops…. we need to get together on this

Anesthesia issues?

Liver Issues

acinetobacter baumanii

Looking for a CF Center in Northern NJ or NYC

New CF Clinical Trial Alert Tool

O2 sats

What’s a healthy weight?

CF Fundraiser… This Thursday May 24TH.

Increasing eFlow efficiency with easyCare

Anybody try a dairy-free, gluten-free, sugar free diet?

suggestions for a good CF center and transplant center?

Pneumonia Vaccine Shown to Actually Increase Bacterial Infections It Is Supposed to Prevent

May 22 2012 |4,216views

Story at-a-glance

Most Popular

Related Links:

Bacterial Infections on the Rise Since Introduction of the Pneumonia Vaccine

Pneumonia Bacteria Swapped Genes Before Prevnar Hit the Market

M abscessus

How often are you seen in clinic?

Holy Trinity students raise money for CF

Concentrated saline therapy not effective in young children with cystic fibrosis

Stopping cell migration may help block fibrosis and the spread of cancer

Bloating

Need thoughts on GI issues for 34 month old CF

Weight

Digestive Care, Inc. Announces FDA Approval for PERTZYE

FDA Approval of PERTZYE

Looking for an old friend with CF please help

Cystic fibrosis walk raises awareness, collects $21,000

Redlands joins fight against cystic fibrosis

Your Weekend Planner: Quogue State of The Village Address; Great…

Pay It Forward Person Of The Week 5/18: Jamie Purchase

Having another baby

Southbury cystic fibrosis walk set