Laser Hair Removal??

I am looking into having some laser hair removal done but my mom brought it to my attention that our skin in much saltier than the average persons and may result in burns from the laser. Has anyone has laser hair removal done, and if so, what was your experience like? Any adverse reactions?
Thanks,
Katie

Laser Hair Removal??

Just discovered an easy high fat product

DS is extremely picky but I've discovered I can expand his food acceptance with familiar foods that have something new...so I tried these which have pizza and cheese and bacon but also egg. It's super easy to cook and very delicious and now he's asking for scrambled eggs whereas before he would have nothing to do with them....I'm going to wait a few more times before moving on to the eggs, but am happy to have this as an easy meal when it's a hectic day. He also does better with crunchy solids and so it's also a good option for those in the toddler want to feed myself stage.
http://ift.tt/1EsX4TK

Just discovered an easy high fat product

Cystic Fibrosis in a Physical Form

Hey guys! Ive made a concept of CF's physical form for my animation. What ya think?

CFphy.jpg

Attached Images

• CFphy.jpg (11.2 KB)

Cystic Fibrosis in a Physical Form

My baby is here!

jane newborn.jpg
Jane Caterina
August 24, 2015
6 lb 7 oz

Delivery went smoothly and I'm recovering nicely. We're home now and doing well. Now I'm just trying to eat like crazy so I can keep my weight up so I can continue to breastfeed.

Attached Images

• jane newborn.jpg (92.7 KB)

My baby is here!

For California Residents - GHPP and Medicare Questions

Hi everyone,
My husband Gary and I are new to this forum, so thanks for having it! Does anyone have good answers about Medicare and GHPP? We're confused and need to make a decision very soon about whether or not to take parts B and D.

After working all of his life, Gary finally went on disability last year. He has taken GHPP (Genetically Handicapped Persons Program) for years, which covers most everything--no copays or Rx costs--for an annual fee. Gary just received a Medicare notification. He automatically gets part A for hospitalization, as an individual on permanent disability. However, he needs to decide whether to accept or decline part B - doctors, labs - and part D - meds. There were be a fee of about $1200-$1500/year for it and it looks like the only benefits to getting it would be that he would be covered out of state (GHPP only covers in-state) and perhaps, a home health nurse when he does home IVs (GHPP doesn't cover this). So we're leaning towards declining. However, if you need it down the line for any reason, you get penalized by 10% per year that you declined!

Have any of you crossed this bridge? So far we have not been able to nail down any clear answers from any of the people who are supposed to be available to help with these kinds of issues.
Thank you in advance. Wishing you all the best.
Lisa

For California Residents - GHPP and Medicare Questions

Orkambi and fat

I know there's been a lot of questions about Orkambi and how much fat you should eat with it. Vertex researchers have kindly shared feedback with me that "the data we have with ivacaftor and a controlled diet is with 20g of fat and greater; however, the guidance in the Phase 3 protocols was that LUM/IVA should be taken within 30 minutes of consuming fat-containing food such as a standard CF high-fat meal or snack. A snack may certainly contain less than 20g of fat. In addition, the example of foods in the Orkambi label contain 5-15 grams of fat, so 5 g should be adequate." The researcher also added that "5g of fat is likely to be OK, as LONG AS you also eat an additional 150 calories or so. Previous data suggests that absorption is influenced by having some fat and enough calories, about 200 in total."

Hope this helps folks!

Orkambi and fat

Printer

Just got back from McDonald's run and the car in front of me had a vanity plate....PRNTR with a picture of a growling bulldog...if I didn't know you were out east I would have waved fondly! 😄

Printer

Delta F508 + D797A

We have a recently diagnosed newborn with this rare combination. We have been fortunate enough to speak with several physicians both at Stanford and UCSF, we find ourself facing the great unknown.

Our daughter is 6 weeks old, had a positive newborn screening which resulted in the genetic sequencing. Her sweat test came back at 40, clear chest X-ray. normal labs and completely asymptomatic to this point. She is growing normally and had we not had the call from the doctors office, we wouldn't think anything was wrong.

I work in a unrelated field of medicine so I was able to get good access to the information available and it doesn't appear that there is a case documented of this mutation combination.

We are still awaiting the sequencing on my wife to see if she carries the rare gene as all of her pregnancy testing came back normal (DF508 would have shown up). Until that comes back we are just in a state of limbo since we don't know what this will end of meaning for her health down the road.

Just thought we would post to see if there were any other parents in our situation

Cheers

Z

Delta F508 + D797A

Liquid, tablet or effervescent Zantac for kids?

We use liquid but for various reasons I'm looking to switch and wanted to know thoughts on tablet versus effervescent pills so for Zantac? Anybody's kids use? Are they as effective? Thoughts?

Liquid, tablet or effervescent Zantac for kids?

The vest clearance system for sale

I have a system for sale was used for a couple months and is still like new. Comes with unit, charger, hoses, meduim vest, and storage bag. Asking $1500 obo please email me at pntlyn@aol.com if interested.

The vest clearance system for sale

Not absorbing pills

I've noticed that some of my pills are not getting absorbed at all and ending up in my stools even though I'm taking 6 enzymes. Has anyone else had this issue? Were you able to fix it?

Not absorbing pills

Overanalyzing Buggers

So DS is 6 and until about 6 months ago, never had a bugger. What I'm trying to figure out is does this say anything about his CF sinus functioning...He hasn't seemed to have any sinus issues, but I want to make sure what to look for. He smells very easily; never complains of headaches; his nose runs when he throws a fit/cries or during treatment. The buggers are "normal" as far as I can tell (I say as far as I can tell as I think the carriers stuff hits me, as I have very and frequent thick mucus and GI issues, so who knows if my "normal" is really "normal" in that compartment.

So any thoughts on whether this means his sinus are working "normally" starting to have issues, etc. And, yes, I know this is overanalyzing, but I have no idea how to access sinus issues and hope those with experience can say "this doesn't say anything...kids get buggers you [unkind words omitted], or whatever the experience. :-)

Thanks!

Overanalyzing Buggers

How to

Does anyone make their own saline solution for nebulizing?

How to

Some cf sweetness

As DH was playing with DS he said sweetly as he watched me sterilizing nebulizers, I wonder if there's a special place in heaven for nebulizers washers? DS piped up...in heaven you don't have to get shots or take any medicine. That's right my love...that's right...

Some cf sweetness

Styrofoam Rx boxes

So I searched the old threads, but was wondering if anyone has found a place to "donate" or recycle the styrofoam boxes that pulmozyme is shipped in. I have given away to friends and family, but we get 3 of these suckers a month and my garage in being over run by them! I hate to just throw them in the trash. Any suggestions besides building an igloo with them?

Styrofoam Rx boxes

Order cheaply pills for ED no preparation

cialis 10mg how long does it last yahoo messenger cialis without a doctor's prescription cialis in saudi arabia cialis without a doctor's prescription - cialis uk supply cialis tadalafil nhs cost

Order cheaply pills for ED no preparation

Hill Rom Vest 105 for sale

I have a hill rom vest for sale for $2500.00 It was barely used.

Hill Rom Vest 105 for sale

Very sad/strange story here in San Antonio

http://ift.tt/1JcwFJ0

Julie (25) passed away from complications with cystic fibrosis. Her body was stolen from the funeral home after her service on August 15th. Her poor parents are beside themselves. :( Hoping and praying they find her soon.

Autumn

Very sad/strange story here in San Antonio

Orkambi Journey with 19 y/o Allan Diagnosed at 4 months

I really wasn't sure how to do this. I am the father of Allan. He is a bit shy to post his own thread and definitely not a YouTube video. So here I come. Hope its Ok to start my own thread. You may post in here and ask questions if you wish, if you have CF, a parent of a child with CF or just curious about CF. I am an open book. I can only put in this thread of what my son tells me. He knows this is being done and I do have his consent.

So just a tad bit of background on Allan. He is 19 y/o and he was diagnosed at 4 months old by a Doctor here in Texas.

His Normal FEV1 is usually around 85% on a good day. Had a bout of infection a few weeks ago sending his FEV1 to 64% and went in hospital for 5 days, sent home with PICC. Is blowing 81% last week and they are doing 1 more week of IVs almost done Wed he goes back for follow up. Feels better than he did about 3 weeks ago.

DAY 1 - Started his Orkambi this morning at 8:15am 2 pills in the AM/PM (Allan does not eat breakfast. Its rare, he is always nauseated) so this is gonna be harder than it looks. Orkambi must be taken with fat containing foods. Spoke with doctor and pharmacist. A glass of chocolate milk it is. This evening where it will be much easier. Allan is different than most with CF. There is no other words for it than his appetite sucks! He has been a picky eater since around 2 years old, the doctor said he will grow out of it..... ya right, more like grow into it. He eats about 500 cal a day if he is lucky, then gets 1500 cal a day through his G-button. So thats around 2,000 cal a day. The dietician wants him about 4,000 cal a day. We have tried everything including certain meds and it does not increase his appetite. So this will be interesting to see if Allan can gain more weight. He is 5'7" and weighs 122 ibs. So will keep everyone posted on his appetite and weight and his lungs, and bowels I guess.

About 10:00am he is starting to say he has a bit of shortness of breathe (probably psychosomatic to be honest). The doctor, YouTube, Orkambi site, the nurse and yes Mom and Dad have all been telling him that he 'may' and probably 'will' at some point get some shortness of breath, cough etc. They wanted him to start Monday today August 24th, 2015 so they can call in Prednisone if needed encase he has worst exacerbation. Will post more of an update later this evening.

Orkambi Journey with 19 y/o Allan Diagnosed at 4 months

tri verus quad flu shot

Flu shots are available now. I discovered a couple years ago you can get one that covers 3 or 4 strains, but you need to ask for the 4-strain one. Probably a "marketing" gimmick, but figured the broader protection the better.
The "Quadivalent vaccines protect against 4 strains of the flu, A/H3N2, A/H1N1, and 2 strains of influenza B."
The trivalent ones only cover 1 strain of influenza B.
I always call ahead to see if the pharamacy has the quadivalent one.
fwiw

tri verus quad flu shot

For people my age

My name is Brandon Justice and I'm from Texas, I'm delF508 homozygous and I'm 20 years old with an Fev1 of 89%. If any of you need someone to talk to, please visit my blog brandoncysticfibrosis.wordpress.com

I give updates on my life, how I stay in shape, and how I went from a downward spiral to the healthiest I've ever been.

If if any of you have blogs I'd love for you to post your URLs here if not please visit mine and feel free to comment.

Thanks y'all.

For people my age

Good Probiotic?

I use Plexus Pro Bio. It's the best probiotic for combatting thrush and keeping my gut healthy that I've found. Anyone have suggestions?

Good Probiotic?

CrossFit

I'm pretty new to the forums and I know a lot of you don't know me, but take this from someone who has done just about everything airway clearance wise, crossfit is the best method by far. Starting is one of the best decisions I've ever made. Let me know if you have a method you're a strong believer in and take a look at my blog. brandoncysticfibrosis.wordpress.com

CrossFit

Orkambi Success

I'm delta F508 homozygous, I'm 20 years old with an FEV1 of 89% and it's all thanks to Orkambi. I've been on the drug for 2 years through its clinical trial phase. Trust me everyone, it's a miracle. Diet and exercise and certain health and wellness products along with Orkambi is key to your success. Take a second to run past my blog brandoncysticfibrosis.wordpress.com I started it yesterday so folks who are interested can track my journey and know that Orkambi not only works, it blew away all of my expectations. My lung function has shot up 14 points in 2 years and this is after a steep down trend. The benefits are there as long as you put in the work I promise you. Please refer anyone who doesn't believe in this medication to this thread. Because I want everyone to see the same improvement I have!

Orkambi Success

Chest pain when breathing deep and coughing

Has anyone experienced sharp chest pain when breathing deep or coughing

Chest pain when breathing deep and coughing

Error message hill rom vest

Ds' vest just stopped, had a message 7 call for service. Unplugged and restarted. Anyone have this message before. Course it's after hours, on a weekend and I'm at the family lake cabin.

Error message hill rom vest

Negative sweat test but lots of mucus

Well our 7 year old daughter came back negative on sweat test. Which is a relief but leaves me puzzled.

My neice is a carrier. We just found that out.

My daughter has to "heeeave" throughout the day, every day, to work up the mucus and spit it out. It is just part of our daily life. I just don't know what else would be causing all this chest mucus? Any ideas? I hear it is very rare to get false negative on sweat test, even for an atypical cfer.

Perhaps her original diagnosis of asthma is correct? I just don't know.

We've watched videos of asthma and CF on YouTube together. The asthma videos she says "no I don't feel like that." but with CF videos and vlogs that describe the mucus and cough she says "yes! That's how it feels!"

I know she doesn't have the traditional bad CF. But what else could mimic atypical/mild CF?

Feeling lost at the moment. Going to dr again next week. Maybe this is just the way it is with my kiddo.

Any ideas or input would be appreciated.

Negative sweat test but lots of mucus

"Normal" for CF kids

DS loves pretend play. This morning while wrapping up some work stuff he came in and showed me "Caterpillar's medicine he got from Walgreen's so he doesn't cough when he runs." He had taken a toy, stuck it in an envelop and is stabling a "label" on the outside with various Caterpillaresque prescription names.
He. Melts. My. Heart. Every. Single. Day.

"Normal" for CF kids

carrier with symptoms

I am 44 yo mother of 2 DD (one with DDF 508 and other with 1 D F 508 and 1 3120 G-A). I have been having respiratory issues and PFTs at about 43%. My family dr says maybe it's because I am a carrier (I have to carry the DF 508 as it's the one both my girls have despite different fathers). Any suggestions of where to go from here?

carrier with symptoms

R117H, original carrier diagnosis but should we retest?

My son is 3 years old and came back positive for a single r117h 7t gene. at 3-4 wks we did the sweat test and it came back normal around 14. At the time I never thought he was salty tasting. we actually didnt even know he was a carrier until a year and a half later when we continued to have loose stools and I came back to having to do the sweat test and requested the documents of his newborn screening. Suprise to me, I did not know that my state automatically tested for common mutations after a high IRT level. Fast forward and over the last 2 years he has seemed to taste saltier and saltier. So much so that if he sweats at all its like licking a potato chip and if he is playing outside during the summer he will develop dried salt on his neck and dust in his hair. he has had 2 episodes of croup and always has his colds longer than my 2 girls and his coughs from it are always super junky. We went to the zoo in 80 degree weather for about 5 hrs ( he didnt walk the whole time) he had plenty of water but was covered in salt at the end and when we got home he was super emotional, complained of his legs hurting and made me carrier him around for 30 mins (not like him at all) as well abd discomfort. I am worried that he may have a rarer mutation too and because of the r117h he wasnt "sick enough" at one month to have a positive test. the genetic screening seems to be around 3K which we cant do right now, do you think it sounds like he would test positive for the sweat test if we tried it again, and how can I get his doctor to order a repeat if he's never been super sick? I am a nurse and usually let the kids cold and such run their course so our doctors almost never see my kids.

R117H, original carrier diagnosis but should we retest?

Anyone willing to do this?

I have an idea for cf awareness and donations. Basically piggybacking on the ALS challenge, having a "CF Puddin' Dump Challange". I feel the use of pudding (mucus) represents CF the best.

Anyone willing to do this challange? Or have any ideas to add?

Anyone willing to do this?

Anyone willing to do this?

I have an idea for cf awareness and donations. Basically piggybacking on the ALS challenge, having a "CF Puddin' Dump Challange". I feel the use of pudding (mucus) represents CF the best.

Anyone willing to do this challange? Or have any to add?

Anyone willing to do this?

Anyone willing to do this?

I have an idea for cf awareness and donations. Basically piggybacking on the ALS challenge, having a "CF Puddin' Dump Challange". I feel the use of pudding (mucus) represents CF the best.

Anyone willing to do this challange? Or have any to add?

Anyone willing to do this?

Respirtech jacket

I recently got a new jacket. I'd always used a black one but thought I'd try something different and got a colored one. I feel it's not doing as good a job as the black one; it's not as tight and I don't feel like it gets the upper lobes as much. To those using the Incourage, do you use a colored vest and find it's doing its job? Thanks!

Respirtech jacket

Cystic Fibrosis Awareness Campaign

Please help us spread awareness with our Cystic Fibrosis campaign. Thank you.

http://ift.tt/1gQQ0FU

Cystic Fibrosis Awareness Campaign

Medicaid criteria for Orkambi

This is Fl, but I think it came federally and thus would apply to all state Medicaid program (but not positive).
http://ift.tt/1MxzMPz

Note they are saying between 40-90% FEV, but that IS NOT a label criteria and the FDA label actually says those under 40% FEV should have extra doctor supervision, so for those outside the parameters on Medicaid, it might mean a fight/appeal, which alone might leave you exhausted and breathless for FEVs.

Medicaid criteria for Orkambi

In memory of the four she lost...

My first touch with CF was thru a friend. When I met her she told me her son was sick. He was 27. He had CF. He died shortly after.

When we became close friends she told me of the other children she lost.

One was an infant boy who died soon after birth.

Another son died when he was a few years old.

Finally a daughter, Salena, who lived to the age of 12.

Shane lived the longest of them all- 27.

Now I worry for my daughter. Not so sick. But just as precious.

And I remember the four she lost.

In memory of the four she lost...

Looking for CF people interested in helping with an artwork!

Hi everyone,
My name is Charlotte and I'm from Melbourne.
I'm trying to reach a broad CF audience and I thought this might be a good spot!
I have CF and I'm currently in my final semester of my Fine Art degree, working with the idea of the many forms of isolation experienced in CF. If anyone is willing to, contributions from CF sufferers would be very valued!! I'm collecting hand written responses (if you have a young child maybe they'd like to do a drawing?) so, an image of your hand written response of how you personally interpret isolation in CF in however long, short, literal or abstract as you like!
They can be sent either through Facebook or cnken1@student.monash.edu. Also feel free to specify if you'd like to remain anonymous but if it's ok, an age would be great to record!
I really appreciate your time, I hope you all have a wonderful day!

ps, the work will be exhibited in the uni's graduate exhibition open to the public so it's a good opportunity to shine some light on CF too!

Looking for CF people interested in helping with an artwork!

I need some help with a uni artwork!

Hi everyone,
My name is Charlotte and I'm from Melbourne.
I'm trying to reach a broad CF audience and I thought this might be a good spot!
I have CF and I'm currently in my final semester of my Fine Art degree, working with the idea of the many forms of isolation experienced in CF. If anyone is willing to, contributions from CF sufferers would be very valued!! I'm collecting hand written responses (if you have a young child maybe they'd like to do a drawing?) so, an image of your hand written response of how you personally interpret isolation in CF in however long, short, literal or abstract as you like!
They can be sent either through Facebook or cnken1@student.monash.edu. Also feel free to specify if you'd like to remain anonymous but if it's ok, an age would be great to record!
I really appreciate your time, I hope you all have a wonderful day!

ps, the work will be exhibited in the uni's graduate exhibition open to the public so it's a good opportunity to shine some light on CF too!

I need some help with a uni artwork!