#cfresearch

Instagram photos and videos

#cysticfibrosis#cfresearch#cysticfibrosisawareness#CF#CFAwareness#CysticFibrosis#CFLife#ChronicDisease#CelebrateLife#CureCF#CfResearch#TreatmentTime#Fighter#CfProbs#Chronic#breatheeasy#cysticfibrosissucks#Treatments#AffloVest#ChestPhysicalTherapy#VestTherapy#CFWarrior#Vest#COPD#Bronchiectasis#CPT#outdoors

Hashtags #cfresearch for Instagram

NEW PODCAST ALERT & guess what?! SOMER LOVE IS BACK 🤗❤️😍|| This week the Salty Cysters takeover with our returning guest, Somer Love, to talk all about social media. They dive into why they use social media, how it has helped cf communication and friendships, and the positive influences it has brought to all 3 of them.

Whether you are an active member on social media, looking to start a personal or CF account, or you’re a bystander on social media & you are just now looking into branching out & making connections with your fellow CFers this episode offers something for everyone & gives great advice on how to use social media to make it the best & most positive experience for you!!

To tune into this weeks episode click the link in our bio or search “Breathe In: A Cystic Fibrosis Podcast” on #Itunes #Soundcloud #Youtube or on Gunnar Esiason.com

#Breathe #BreatheIn #BreatheInPodcast #Podcast #CysticFibrosis #CF #CureCf #CfAdvocates #CfResearch #Cyster #Fibro #SaltyCysters #Spoonie #ChronicDisease #DonateLife #CelebrateLife #Love


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Look at this adorable AffloVest @semiseriouschefs made for Baby Sea Otter! Now "no one has to do treatments alone in their house!” Thanks again for sharing! Share your photos or videos with us by tagging us with #AffloVest


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AffloVest Tutorial Series: Our next video shows you how to clean and maintain your AffloVest after use. For more videos like this check out our YouTube Channel (Link in bio)


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White Crane Emerald clutch will be auctioned off at the Cystic Fibrosis 65 Roses 🌹 Fundraising Ball, Adelaide 〰️on August the 18th. Raising much needed research money for those that live with this condition. 💪


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Recovering after another successful weekly PT session 🤗✅🏃🏻‍♀️|| As a lot of you know who have been around here for awhile I go to physical therapy once a week to help keep my lungs healthy & stable. I started about 2 years ago & it has been a huge game changer for me health wise ever since I started & it’s something 100% worth all the time & effort I put into it 🤗

This week involved a lot of running & stretching/ chest PT to get mucus out of places I’ve had a difficult time getting out on my own. A lot of you message me asking what I do at PT or what exercises I do every week when I go. The truth is this question is impossible to answer bc each week is 100% different. Each week is based on what my body needs that week. If I were doing the same exercises week after week at PT 1. My lungs would get used to it & it wouldn’t be as effective for me & 2. I’d just do them at home on my own rather than drive to Hopkins every single week.

If your interested in going to PT I highly recommend 1. Talking to your CF care team about it & 2. Setting up a consult with a pt who understands CF & has some knowledge on what the best exercises are for you. So even if you don’t have the time to go week after week, bc trust me I know it’s a difficult time commitment, at least a pt can construct a successful plan for you that is made for YOUR body👍🏼 Remember even tho we all have CF our bodies are so different from one another & what is best for me might not be best for you. I mean look at me my body needs a different plan every week😂 There are also some great online programs that can hook you up with a pt virtually in your home. There are also some great online videos teaching different stretching techniques based on what your body needs. A perfect example of these were created by the Johns Hopkins CF Center which are great for anyone of all ages if you are looking to do something at home on your own & get more mucus out of your body without killing yourself from cardio in the process. You can find the videos at: https://m.youtube.com/playlist?list=PLJBkk17XfXmmz5anYtAD7MyBNYdUZQi6Q

Happy Wednesday my friends 🤗💖

❌⭕️❌⭕️Lea


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We are at the AARC Summer Forum in San Antonio, Texas. Come visit us at Booth 21 today and tomorrow! #aarc #aarcsf


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We are at the AARC Summer Forum in San Antonio, Texas. Come visit us at Booth 21 today and tomorrow! 
#AARC #aarcsf


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Chicago Weekend ✅🤗🏙️👫|| This past weekend my wonderful boyfriend, Paul, & I visited Chicago!! Neither of us had ever been before other than for flight layovers. So when we had some friends recently move to the area we thought it was the perfect excuse to finally visit & explore the city 🤗

We had an eventful weekend full of so many activities but we had the best time & enjoyed our time in the city with friends so much 🤗💖 We will definitely be back!!

If you’ve been to Chicago, are from Chicago, or currently live in Chicago comment your favorite place to visit in the city!!

❌⭕️❌⭕️Lea


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Beau and his wife Megan share how the AffloVest doesn't weigh him down in life! With an average weight of 8lbs, the AffloVest is the lightest mobile HFCWO CPT therapy. @65broskate

For the full length video click the link in our bio!

#sponsored by International Biophysics Corporation (@biophysicscorp)


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Beau shows us that you can do your normal activities, like cooking, while using the AffloVest.
For more Beau content check out his Instagram page: @65broskate

#sponsored by International Biophysics Corporation (@biophysicscorp)


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John Miller is someone you should all know! John is our Director of Cystic Fibrosis Research here at PTI. John is always cracking jokes in the break room and a little known fact is that he took a stand-up comedy class after grad school! He even performed at a comedy club! Besides being one of the reasons the office is always smiling, John loves working with his team and being able to be the first person to see the research data. John made a point to say that even though he loves all those aspects of his job, the job he is most proud of is being able to help the CF community through his work. When John is not at work, he is at home spending time with his family. Especially his 3-year-old and his eight month old baby!
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#PTIprofiles #PTIcares #PTIoffice #Boston #clinicaltrials #cureCF #cfresearch #cysticfibrosis #curecysticfibrosis #PTI


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Check out Jennifer (@battling2breathe) staying motivated and positive during her treatment time!
REPOST:
With the @afflovest, I can have freedom and have #accessibility which is important when you have to do The Vest 2-3 times a day. This way I can get other things done instead of sitting for 30 minutes.  Afflovest is also great for travel.  Fun fact: I love doing makeup and playing around with different looks. I use treatment time to do things like this, so it’s easier to stay motivated while doing treatments if I’m doing something special. (may sound silly but I save certain activities for treatment time only because I want to keep motivated) -
 Question: what do YOU do to stay motivated during treatment time?
 Thanks again for sharing Jennifer! Share your photos or videos with us by tagging us with #AffloVest.


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AffloVest Tutorial Series: Our next video shows you how to turn off your AffloVest to preserve battery life. For more videos like this check out our YouTube Channel (Link in bio) #AffloVest


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International Biophysics Corporation, makers of the AffloVest, is cheering on those who are participating in stage 5 of the Tour de France! Keep it up everyone!
@tourdefrance2018 @thejensie @petosagan @cf_foundation @cfroome @bobkeroll #tourdefrance
#TDF2018 #shutuplegs


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International Biophysics Corporation, makers of the AffloVest, is cheering on those who are participating in stage 5 of the Tour de France! Keep it up everyone!
@tourdefrance2018 @thejensie @petosagan @cf_foundation @chrisfroome #tourdefrance
#TDF2018 #shutuplegs @cycle4lifemdchapter #cfcycleforlife


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Another 6 week CF clinic appointment officially in the books with my CF clinic sidekick 💁🏻✅🤗|| Today was my 6 week CF clinic check up. I've been going to CF clinic every 6 weeks rather than the every 3 months standard for years now, mainly bc it just produces better results for me! I started off my long day with an hour & a half physical therapy appointment to help clear the excess mucus my morning treatments couldn't get out to prep these lungs for PFTs. Then I had my PFT appointment, which thankfully my lung function was up a little bit 🤗 yay for little wins 🤗 Then I met with the nurses, my doctor, & finally had my yearly nutrition appointment to make sure this girls body is getting all the nutrients it needs due to the malabsorption CF can cause, as well as to make sure I'm on the right dose of digestive enzymes (since my body doesn't produce them on its own), discuss my blood sugars to make sure CFRD (CF related diabetes) is not something we have to be concerned about, & make sure I'm at my target weight. Thankfully I got a good report & I'll see the team again in another 6 weeks!

I hope everyone had a happy Tuesday 🤗💜

❌⭕️❌⭕️Lea


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Did you know? #AffloVest is Made in America?
Our highly specialized team of lab specialists and quality inspectors builds and ships the AffloVest right here in our ISO 13485 certified, FDA registered facility in Austin, Texas. The AffloVest®️ is a fully mobile HFCWO airway clearance device with Direct Dynamic Oscillation™️ technology that closely mimics hand CPT for mobilizing and clearing secretions for patients with severe respiratory diseases such as bronchiectasis, cystic fibrosis and other neuromuscular diseases.
For more information on AffloVest check the link in our bio!


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Have you met Deb?! Deb Southmayd is our Human Resources Director here at PTI. She prides herself on finding the best employees that fits right into our family. One of her favorite events that we participate in every year is the Great Strides Walk in Boston. She recalls an amazing boy who has gotten up to sing at the event the last two years and how inspirational it is for everyone there. In her free time, Deb loves to work on her garden and play golf. She has two children and two beautiful grandchildren who she loves to spend time with. They do a lot of traveling together, as you can see them all in Ireland!
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#PTIprofiles #PTIcares #PTIoffice #Boston #clinicaltrials #cureCF #cfresearch #cysticfibrosis #curecysticfibrosis #PTI #clinicaltrial #PTIfamily #golf #gardening #garden #flowers #GreatStrides


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4 months until race day!!! Stay tuned for more information on registration for the Blow Away 5K on November 10, 2018!

#throwback #ba5k #cfawareness #cfresearch #racedaycountdown


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Beau took his Afflovest down to BLVD East in Weehawken, New Jersey to watch the beautiful sunset with his wife. "I like doing the Afflovest outside because it moves things around a little more and the whole point of getting a portable chest therapy machine is to use it wherever you like. In this case, goofing off with my wife down by the Manhattan Skyline :) " - Beau​

Watch the full video by clicking the link in our bio
For more Beau content check out his Instagram page: @65broskate
#sponsored


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You guys. We are in Chapel Hill getting to hang out with some innovators globally for cystic fibrosis research and clinical trials. The guy on the right started the first cf center for adults in 1978. Cause back then, there weren’t many adults with cf- hardly anyone made it past childhood. We met several other key folks in major clinical trials and advancement for cf care. We have come such a long way thanks in large part to folks like this!

#cysticfibrosis #cfresearch #cure #chapelhill #cfpatient #medicalresearch #stillalive #breathing #doctor #blessedtobealive


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#Repost @pti_biotech
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It's time to make our new office even prettier!

Last year, a talented local artist Jamie Chan made a gorgeous #cysticfibrosis inspired #grafitti for us. Since then we have moved but the piece we all fell in love with it went with us. It will now have an even more prominent place to give it justice and emphasis it deserves!

#cureCF #cfresearch #cysticfibrosis #cysticfibrosisawareness #fibrosicistica #Cisticnafibroza #cisztásfibrózis #fibrosisquistica #65Roses #kno1_famous


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It's time to make our new office even prettier!

Last year, a talented local artist Jamie Chan aka @kno1famous made a gorgeous #cysticfibrosis inspired #grafitti for us. Since then we have moved but the piece we all fell in love with it went with us. It will now have an even more prominent place to give it justice and emphasis it deserves!
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#cureCF #cfresearch #cysticfibrosis #cysticfibrosisawareness #fibrosicistica #Cisticnafibroza #cisztásfibrózis #fibrosisquistica #65Roses


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Found this random guy on the beach I've never met before rocking the @breathe_in_pod tank so obviously we had to take a pic together 😂🌊☀️

JK it's my boyfriend but the @breathe_in_pod tanks are going fast!! Get yours before they are gone! Only $15 on the @saltycysters online etsy store 🙌🏼

www.Etsy.com/shop/saltycysters


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Cindy (@cindybaldwinbooks) shared this great photo of her doing therapy in the morning while working on her back porch office enjoying the weather! Thanks again for sharing Cindy! Share your photos or videos with us by tagging us with #AffloVest
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#CysticFibrosis #CF #CFLife #CFAwareness#CFWarrior #COPD #Bronchiectasis #CPT#ChestPhysicalTherapy #CureCF #Vest#VestTherapy #Treatments#TreatmentTime #CfProbs #CfResearch#Chronic #ChronicDisease #Fighter#CelebrateLife #outdoors #breatheeasy#cysticfibrosisawareness #cysticfibrosissucks


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Say hello to Debora Melo! She describes herself as a person wearing “many hats” in her role with us at PTI. Debora is a Clinical Trial Associate, a Program Manager, a nasal and sweat collector trainer, and in charge of organizing all our events. Especially, most recently at ECFS in Belgrade! Debora describes her job as always moving and never having a dull moment. She especially enjoys building relationships with doctors at conferences like ECFS. Debora is always working hard to get our name out to the world, while also keeping all our clinical trial sites running smoothly. In her free time, Debora loves to cuddle with her puppy (can’t you tell by her pictures?) and hang out with friends and family. Her favorite memory in our office is winning our Office Olympics 2 year ago, which she still gloats about to this day.
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#PTIprofiles #PTIcares #PTIoffice #Boston #dogs #puppies #puppy #officeolympics #clinicaltrials #cureCF #cfresearch #cysticfibrosis #curecysticfibrosis #PTI #ECFS #ECFS2018 #clinicaltrial #PTIfamily


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Melissa “wanted to take care of herself and do her treatments” so she started using the AffloVest! 3 customizable settings and 3 customizable levels to go with what works best for her. Watch to see how the Afflovest helps Melissa produce a productive cough to help keep her healthy


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AffloVest Tutorial Series: Our next video shows you how change the intensity levels on your AffloVest before and during treatments. For more videos like this check out our YouTube Channel (Link in bio) .
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#CysticFibrosis #CF #CFLife #Howto #CFAwareness#CFWarrior #COPD#Bronchiectasis#CPT#ChestPhysicalTherapy #CureCF#Vest#VestTherapy#Treatments#TreatmentTime #CfProbs#CfResearch#Chronic #ChronicDisease#Fighter#CelebrateLife #outdoors#breatheeasy#cysticfibrosisawareness#cysticfibrosissucks


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Say hello to Majed Fawaz! He is our Vice President of Chemistry, Manufacturing & Controls (CMC). Majed is very passionate about the work he does because he enjoys talking to people and interacting with vendors. He is always interacting with someone, whether that be over the phone or asking someone about their day in the break room. Majed has also been a professor in France before being at PTI. Majed loves spending time with his family as you can see him with his family on vacation. When Majed is not at work or spending time with his family, he loves to go biking and play the saxophone. He also collects vinyl records and calls himself an “audio-dinosaur”.
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#PTIprofiles #PTIcares #PTIoffice #Boston #clinicaltrials #cureCF #cfresearch #cysticfibrosis #curecysticfibrosis #PTI #clinicaltrial #records #vinylrecords #music #audiodinosaur #biking #saxophone


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There is another new story up on our website! Take the time to read about Diego Otero’s amazing journey in Colombia.

“Always stay on top of all your treatments and medications, it may not seem like a big deal, but in the long run your body will thank you.” - Diego
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#cureCF #cure #cysticfibrosis #curecysticfibrosis #colombia #cf #cfresearch #cfawareness #cysticfibrosisawareness #Cystickafibroza #Fibrozakistike #mukoviszcidózis #cisztásfibrózis #kistikfibrozis #kistikfibrozismerkeziicin #kistikfibrozistürkiye #cysticfibrosis #kifdericinkosuyorum #kifder #Mukowiscydoza #mukoviskidoosi


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Beau (@65broskate ) straps in to demonstrate how the AffloVest works for him to help mobilize secretions and produce a productive cough. With 3 customizable settings and 3 customizable levels, Beau has lots of options to do what works best for him .
#sponsored
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#CysticFibrosis #CF #CFLife  #AffloVest#CFAwareness#CFWarrior #COPD #Bronchiectasis #CPT#ChestPhysicalTherapy #CureCF #Vest#VestTherapy #Treatments#TreatmentTime #CfProbs #CfResearch#Chronic #ChronicDisease #Fighter#CelebrateLife #breatheeasy#cysticfibrosisawareness #cysticfibrosissucks #sponsored


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Our purpose. #cf #cfresearch #ba5k


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Advancements in cystic fibrosis research are not only made possible by donations but also by CF patients that take part in medical studies. 👩🔬Today I am taking a sweat test. A sweat test is the defining test to get a medical diagnosis of CF. However, for this particular study they are studying how my CF is doing now compared to the sweat test I had back in 1997 when I was first diagnosed with CF. Now that I have been on Orkambi (a special medication that dramatically improves the quality of life for CFers like me) for 3 years they want to see if by chance my CF has improved. I am proud to say I am part of the advancements made in the CF community! #cysticfibrosis #cysticfibrosisfoundation #sweattest #cfresearch #makingadifference


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AffloVest Tutorial Series: Our next video shows you how to operate the Therapy Modes on your AffloVest controller. For more videos like this check out our YouTube Channel (Link in bio) .
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#CysticFibrosis #CF #CFLife #Howto #CFAwareness#CFWarrior #COPD#Bronchiectasis#CPT#ChestPhysicalTherapy #CureCF#Vest#VestTherapy#Treatments#TreatmentTime #CfProbs#CfResearch#Chronic #ChronicDisease#Fighter#CelebrateLife #outdoors#breatheeasy#cysticfibrosisawareness#cysticfibrosissucks


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And this is what recovery looks like... || It has officially been almost 1 week since sinus surgery. And I'm almost recovered. This recovery has been tough & Im so ready to be able to blow my nose & get back into my workout routine, but I'm hopeful this surgery will improve my quality of life even more post transplant!

Kudos to anyone who has been through sinus surgery you guys are warriors 🙌🏼💜

❌⭕️❌⭕️Tiff


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#Repost @pti_biotech with @get_repost
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Some of us are already in Belgrade, Serbia, for the #ecfs2018 conference, putting final touches on fun things for the company booth.
Make sure to visit our booth. In the meantime, stay tuned, teasers will follow.

We love the @novaiskra coworking space!
#cfresearch #cysticfibrosis #cysticfibrosisawareness #belgrade #fibrosicistica #cističnafibroza #mucovisidose #mukoviszidose #cystikfibros #муковисцидоз


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Do you have a business that would like to support Cystic Fibrosis Research? Swipe across to see how you can help.
#AllForTheFight #cure4cffoundation #cfarmy #cfresearch #cf #cysticfibrosis


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When you don’t need to get inspiration off elite athletes or celebrities because the gym is filled with incredible people 🙏💛
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@_seanaspinall #repost
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#CFweek #CFyelfie
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CF is a different experience for everyone, but behind closed doors, regardless of age, we are all here doing daily treatment so we can live our best life.
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CF has taught me to do things that make you happy, follow your passions, surround yourself with people you love and ignore those who tell you ‘you cant’.
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The CF community is filled with amazing people pushing boundaries and defying the odds. CF doesn’t define us, it is just a tool to make us stronger individuals.
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Don’t settle for less... be kind, exercise more, read more books, spend time with your friends and family, hug your pets and be happy 💛
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@fight2breathe
@benmudge_
@sophiegraceholmes
@lovetobreathe
@g18evans
@cftrustuk
@cfvs.everest
@meetthestroops
@joshlj24
@swanseauni
@sa1_weightlifting_walesacademy —————————————
#cysticfibrosis #cysticfibrosisawareness #PhDlife #CFresearch #exercise #65roses #wearyellowday #justbreathe #lifeunlimited #cftrust


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The struggles of being a female with CF 💁🏻💁🏼|| This week we have a girls only podcast where the Salty Cysters take over the Breathe in Podcast to talk all about the struggles of being a female with cystic fibrosis. CF poses challenges for any individual fighting it, however being a female with CF brings its own set of unique challenges. Whether it's that bottomless pit of a purse 👜, that CF belly🤰🏻🤰🏼, needing to eat a TON of food especially on a first date 🍔🍟 & the not so glamorous need to use the bathroom 🚽, or not being so lady like & spitting up a big glob of mucus in public 🤢 We touch on all these issues, how we deal with them, & so much more on this weeks episode!

To check out the episode search "Breathe In: A Cystic Fibrosis Podcast" on #itunes , #soundcloud , #youtube or visit: http://www.gunnaresiason.com/breathe-ep-38-female-problems/

❌⭕️❌⭕️Lea & Tiff


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Today we are remembering our dear friend & salty cyster @lorigirl515 who fought such a tough & resilient battle with CF 💜 You will be missed beyond words Lori. Your strength, love of life, infectious personality, & constant positivity will be missed deeply. Thank you for all you did for us & the cf community!! We love you 💜💜

❌⭕️❌⭕️Lea & Tiff


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Only 3 DAYS left to preorder the @saltycysters limited edition hot pink t-shirt 🤗 Once the preorder ends there will only be a very very limited number available for purchase! Available in toddler, youth, & adult sizes!! Get them while you still can!!

To purchase visit: https://www.etsy.com/shop/SaltyCysters

A portion of the proceeds will be donated to the @boomeresiasonfoundation to help those currently fighting cystic fibrosis 💜

❌⭕️❌⭕️Lea & Tiff


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I’ve done it! Please please do your bit for CF #research #cfresearch #cfawareness #organdonation #yellow 💛


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#CFweek #CFyelfie
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CF is a different experience for everyone, but behind closed doors, regardless of age, we are all here doing daily treatment so we can live our best life.
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CF has taught me to do things that make you happy, follow your passions, surround yourself with people you love and ignore those who tell you ‘you cant’.
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The CF community is filled with amazing people pushing boundaries and defying the odds. CF doesn’t define us, it is just a tool to make us stronger individuals.
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Don’t settle for less... be kind, exercise more, read more books, spend time with your friends and family, hug your pets and be happy 💛
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@fight2breathe
@benmudge_
@sophiegraceholmes
@lovetobreathe
@g18evans
@cftrustuk
@cfvs.everest
@meetthestroops
@joshlj24
@swanseauni
@sa1_weightlifting_walesacademy —————————————
#cysticfibrosis #cysticfibrosisawareness #PhDlife #CFresearch #exercise #65roses #wearyellowday #justbreathe #lifeunlimited #cftrust


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For my incredible patients 💛 Wearing yellow on my work from home day while writing up my research into aspergillosis in CF. Wear yellow day 22/6/18 to raise awareness of cystic fibrosis. Text ‘Yellow’ to 70500 to donate £5 to @cftrustuk #CFyelfie #yelfie #cftrust #cysticfibrosis #cf #sixtyfiveroses #yellow #wearyellow #supportcf #cfdoctor #cfresearch #onfridayswewearyellow #macfc #manchesteradultcysticfibrosiscentre #Manchester 💛


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We are in Nashville for the study investigator meeting. Some of us snuck away at the end of the day and went to @rownashville recommended by @reid.w.damico just yesterday during his visit at our new offices. Great recommendation, thanks Reid!


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Today is National Selfie Day and we wanted to share Brian’s (@lungwarrior) awesome AffloVest Selfie! Brian always takes the best selfies during his treatment time. Thanks again for sharing Brian! Share your AffloVest selfies with us by tagging us with #AffloVest
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#CysticFibrosis #CF #CFLife #CFAwareness#CFWarrior #COPD #Bronchiectasis #CPT#ChestPhysicalTherapy #CureCF #Vest#VestTherapy #Treatments#TreatmentTime #CfProbs #CfResearch#Chronic #ChronicDisease #Fighter#CelebrateLife #outdoors #breatheeasy#cysticfibrosisawareness #cysticfibrosissucks #selfie #NationalSelfieDay


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First sinus surgery ✅👃🏼|| Today was my first ever sinus surgery. I never really had sinus problems pre transplant, however post transplant I started having a lot of pressure, headaches, & congestion. So my CF clinic, who I still see post transplant (since your girl still has cf everywhere else in her body except these new lungs💁🏼) had an ENT evaluate my nose who confirmed that my sinuses were in fact blocked & needed to be cleaned out & the passage ways in my sinus cavity needed to be made larger.

So after months of planning & waiting for my OR date. Today was finally the day. Here's to hoping today's surgery did the trick & I'm on to little to no congestion & less headaches/ pressure 🤗💜

❌⭕️❌⭕️Tiff


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New to AffloVest? Watch our series of tutorial videos. The first one is turning on your vest and getting ready for use. Stay tuned for more! For more videos like this check out our YouTube Channel (link in bio) .
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#CysticFibrosis #CF #CFLife #Howto #CFAwareness#CFWarrior #COPD#Bronchiectasis#CPT#ChestPhysicalTherapy #CureCF#Vest#VestTherapy#Treatments#TreatmentTime #CfProbs#CfResearch#Chronic #ChronicDisease#Fighter#CelebrateLife #outdoors#breatheeasy#cysticfibrosisawareness#cysticfibrosissucks


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Day 1 of new research drug... so excited to be a part of this study!!! #cfresearch #newdrug #goodluck


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It was a GREAT board meeting at the Western PA Cystic Fibrosis office last night. The one thing we really dove into if ADVOCACY! So super easy to do to reach your senators, mayors, congressmen.
Please join in the fight and become a CF Advocate! Just by texting 'FightCF' to 52886 you can help thousands of kids and adults fighting this disease keep the healthcare they need in place and MAKE YOUR VOICE HEARD!
Please help and register. EASY PEASY I PROMISE! #CureCF #65Roses #CFAdvocacy #CFAwareness #CFWesternPA #helpthekids #CFResearch


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Working up an apetite before lunch and letting the creativity juices flow before the next meeting! ⛸️
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#cfresearch #cureCF #cysticfibrosis #officebreak #lunchbreak #cure #65roses #CF #CFLife #CFAwareness #CFtravels #aworldwithoutCF #unmondesansFK #CFaware #beatCF #lifewithCF #fightCF #CFwarrior #Cysters


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A night away from home with CF 💁🏻|| So since I'm sick with a cold this weekend, probably from doing way too much the past few weeks, I figured I take this not so exciting time in my life to talk about something that got me thinking last weekend, a night away from home with CF.

So last weekend on top of Tiff visiting, my boyfriend & I had a wedding to go to which meant spending a night away from home. For all of you that have been around here for awhile, I think you've picked up by now either from our posts or from our podcast ( @breathe_in_pod ) that a single night away from home is not always the easiest & honestly feels like more of a hassle than anything else for the amount of things you have to pack.

So here are a few of my tricks I've learned over the years that make an overnight stay or packing for a trip a lot easier:
1. Having a portable vest like the (afflovest or Monarch vest is a game changer 🙌🏼) I personally have an afflovest & I'm able to pack my vest, nebulizer, nebulizer cups, meds, toiletries, makeup, & clothes all in a classic roller carry on style bag like the one seen above ⬆️ It makes traveling so much more light & has made packing go from two to three huge bags down to one for me!
2. Portable nebulizer 💨 So for those of you who can't use an eflow for all your nebs, I use the Pari TrekS nebulizer when I travel. It's so tiny & compact & saves you so much space 🙌🏼
3. 2 nebulizer cups & portable tea kettle|| Depending on how many nights I'm going somewhere I normally bring only 2-4 nebulizer cups & then I bring a portable tea kettle that plugs into the wall & boils my neb cups. The one I have actually folds down & takes up very minimal space in your bag.
4. Finally rather than bringing all my pill bottles or pill organizer, I lay out all my pills for the morning, middle of the day, & evening & put each in its own labeled plastic ziplock sandwich bag. This method takes up no space & is perfect when you are on the go bc you can simply grab your bag for that day & head out the door.

I hope some of these tricks helped! If you have any CF traveling hacks leave them below!! I love to learn new tricks from you guys 🤗❤️

❌⭕️❌⭕️Lea


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YOUTH SIZES in the hot pink Salty Cysters shirt are now available for a 2 week pre-order 🤗🙌🏼💖 Be sure to order them while they are here!! Portion of every shirt sold will be donated to the @boomeresiasonfoundation

Link to order: https://www.etsy.com/listing/621047029/youthtoddler-size-neon-pink-crew-neck?ref=shop_home_active_1 (LINK IN BIO... click Salty Shop on our website)

❌⭕️❌⭕️Lea & Tiff


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IVF & Cystic Fibrosis 👶🏻💉|| Last Week Gunnar & I had the privilege of having Doug Simmons, who is 33 years old with #CysticFibrosis , on the podcast to talk about the process of IVF for CF men who want to have children.

#FunFact 98% of men with cystic fibrosis are infertile & must use IVF if they want to have children!!

So to help us better understand what that process entails Doug walks us through every step of the process. I think what most people don't realize is that IVF really does entail components from both men & women for it to work & even Doug admits it's been a challenge.

Doug also touches on the fact that IVF is not only time consuming & costly, but it is also very stressful. This is definitely an insightful podcast for people with CF who plan to start families in the future. And I'm not going to lie it was by far one of my favorite podcasts to film not only because I learned so much from Doug about this process but he has an infectiously positive spirit!

To listen to the podcast search "Breathe In: A Cystic Fibrosis Podcast" on #itunes , #Soundcloud , or visit: http://www.gunnaresiason.com/breathe-in-36-cystic-fibrosis-ivf/

❌⭕️❌⭕️Lea


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@semiseriouschefs show how much room their AffloVest bag has when they travel. There is even room for Nathan’s Baby Sea Otter!! Thanks again for sharing! Share your photos or videos with us by tagging us with #AffloVest
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#CysticFibrosis #CF #CFLife #CFAwareness#CFWarrior #COPD #Bronchiectasis #CPT#ChestPhysicalTherapy #CureCF #Vest#VestTherapy #Treatments#TreatmentTime #CfProbs #CfResearch#Chronic #ChronicDisease #Fighter#CelebrateLife #outdoors#breatheeasy#cysticfibrosisawareness#cysticfibrosissucks  #Travel #babyseaotter #seaotter


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Salty Cysters take Baltimore Day 2 2️⃣👯💖|| Our second & final day together started out with a burger from Shake Shack which Tiff confirmed was no where near as good as In-N-Out Burger 🍔 (For those that have tried both leave your votes below for which is better 👇🏼)

We then made our way to the National Aquarium 🐬🐡 Where we made lots of new friends 🐠🐙 From there we walked around the harbor & rode the infamous dragon boats, which I swear no one from Baltimore has actually ridden but they are pretty iconic to say the least 😂🐲⛵️🐉

We wrapped up our day with dinner in Little Italy with friends 🍝😋

We are both so so thankful we were able to spend some time together these past 2 days 💖 Thank you all for following along & being apart of it!!

❌⭕️❌⭕️Lea & Tiff


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AffloVest Tutorial Series: Our next video shows you how to properly adjust the shoulder straps, ensuring proper anatomical targeting. For more videos like this check out our YouTube Channel .
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#CysticFibrosis #CF #CFLife #Howto #CFAwareness#CFWarrior #COPD#Bronchiectasis#CPT#ChestPhysicalTherapy #CureCF#Vest#VestTherapy#Treatments#TreatmentTime #CfProbs#CfResearch#Chronic #ChronicDisease#Fighter#CelebrateLife #outdoors#breatheeasy#cysticfibrosisawareness#cysticfibrosissucks #AffloVest


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$1,000 equals $2,000!!!!
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$2k more towards #CFresearch to help #SAVE my girl’s #LIFE
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Join our #Andreasangels #GreatStrides #team and raise $1,000 by year-end. See link in IG bio or click here:
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http://fightcf.cff.org/goto/andreasangels18
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Prefer to just donate? You can do so online at the above link or ask me how you can double your cash donation. $50 will equal $100, $500 will equal $1,000 and so forth! DM me.
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Goal is to raise a minimum of $20k by 12.31.18 ... we’re 1/2 way there!!!
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http://fightcf.cff.org/goto/andreasangels18
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#CF #cysticfibrosis #CFF #cysticfibrosisfoundation #mygirl🎀 #cysters #fibros #fundraising #foracure #untilitsdone #inthistogether


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Salty Cysters take Baltimore Day One 1️⃣💖👯|| Our first day together in Baltimore was spent with Tiff meeting my family including my sassy dog Boo 🐶 All of them she has met & talked to numerous times through FaceTime however this was their first time ever meeting in person 🤗

The day continued with brunch with some of my extended family (aunts, uncles, cousins, etc) who have all met Tiff on FaceTime at one point or another. Can you say #BreakfastWithTiffany 😂💖

From there we hung out for a little bit & then ended the day with Tiff meeting up with a large group of my friends for Tiff's first ever experience eating Maryland steamed crabs 🦀 She definitely got the hang of it pretty fast but I'm also pretty sure she thinks we are all crazy 😂

Stay tuned to see what day 2 had in store for us!!

❌⭕️❌⭕️Lea & Tiff


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EXCITED because the limited edition hot pink Salty Cysters shirt is FINALLY available in the Salty Cysters Etsy Shop 🤗🙌🏼👯💖|| After popular demand the Hot Pink Salty Cysters shirt is available for $20 during our 2 week pre-order. This shirt is limited edition!! After the pre-order has closed there will only be a select number of shirts available & after they are sold out we will not be getting anymore in stock.

A portion from each shirt sold will be donated directly to the Boomer Esiason Foundation to support the Cystic Fibrosis Community 💜

To get your limited edition salty cyster shirt visit: https://etsy.me/2LJmd1s

❌⭕️❌⭕️Lea & Tiff


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We are FINALLY reunited 🤗👯💖🙌🏼|| As most of you know our story, due to the fact we both have Cystic Fibrosis Tiff & I were never actually able to be around each other. Therefore, we had a friendship that we built through social media & was 100% based on texts, phone calls, & FaceTime. However, after Tiff got a double lung transplant a year & a half ago we knew it would be more of a reality to be able to meet. After a year of waiting & getting clearance from our doctors we FINALLY met in person at the most magical place aka Disney World back in March 🤗💜

Due to the fact I live on the east coast & Tiff lives on the west coast we never thought we would be able to see one another so soon after our Disney trip. However, once one of Tiff's good friends was having a wedding on the east coast, we decided to make it a reality to see one another while she was out here 🤗

We can't wait to share with all of you our adventures while we are together & if you missed it don't forget to check out the Instagram live we filmed tonight!! We hope to film another one at some point tomorrow!!

We love you guys 🤗💜💜

❌⭕️❌⭕️Lea & Tiff


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HAST (High Altitude Simulation Test)💨✈️👆🏼|| Today I went through a totally new experience to me, having a HAST (High Altitude Simulation Test) performed. For as long as I can remember every time I fly anywhere I always always always fall asleep on the plane once the plane is up in the air. Everyone always tells me I'm so lucky I can sleep on a plane, but honestly once I get to my destination especially after taking multiple flights to get to my destination I often feel like I'm suffocating & it takes me a day or two to adjust to wherever I am after a flight. My PT & I have talked for years about how I need to remember to bring a portable pulse ox with me but with everything we have to bring on a trip for CF I often forget to bring one with me 🙈

Back in march when Tiff & I finally met, I remembered to finally bring my portable pulse ox with me on the plane. Prior to the flight I was my usually 98-99%, however my first 5 minutes in the air I dropped to 86% & then by mid flight I was all the way down to 78% 😳 I naturally thought that couldn't be right so I put it on my boyfriend to see if his was normal, it was, & then I rechecked myself. When I got back to Baltimore I of course told my PT what had happened & we figured out I could have a HAST test performed to see if I've rlly just needed supplemental oxygen when I fly.

Today I had the HAST test performed. It honestly was a lot easier & faster than I was expecting. The test requires an initial ABG (arterial blood gas) when you get there to determine where your blood gases are at & if the test is even safe to perform. Once they get that result back they start the actual test where they make you breathe 16% oxygen, which is supposed to mimic being at 8,000 to 10,000 feet, normal ground level oxygen is 21%. You inhale & exhale this for a max of 20 some minutes or until your pulse ox drops to 88%. Then they take another ABG & you wait for the results...

Other than the fact my wrist is now black & hates me, the test was easier than expected. If you are someone who also has some difficulty when flying or at higher altitudes I definitely recommend having it done!!

Happy Friday Everyone 🤗💜

❌⭕️❌⭕️Lea


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New to AffloVest? Watch our series of tutorial videos. The first video shows you how to tighten your AffloVest for a comfortable fit. .
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#CysticFibrosis #CF #CFLife #Howto #CFAwareness#CFWarrior #COPD#Bronchiectasis#CPT#ChestPhysicalTherapy #CureCF#Vest#VestTherapy#Treatments#TreatmentTime #CfProbs#CfResearch#Chronic #ChronicDisease#Fighter#CelebrateLife #outdoors#breatheeasy#cysticfibrosisawareness#cysticfibrosissucks


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Abriana (@chevroletbabe_mrsjones) during her treatment time! She is grateful that she is able to have access to life saving devices. Thanks again for sharing Abriana! Share your photos or videos with us by tagging us with #AffloVest
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#CysticFibrosis #CF #CFLife #CFAwareness#CFWarrior #COPD #Bronchiectasis #CPT#ChestPhysicalTherapy #CureCF #Vest#VestTherapy #Treatments#TreatmentTime #CfProbs #CfResearch#Chronic #ChronicDisease #Fighter#CelebrateLife #outdoors #breatheeasy#cysticfibrosisawareness #cysticfibrosissucks


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What are Nevena and Debora working on? You'll have to wait until the exhibit hall of the #ecfs2018 conference opens tomorrow! 😉
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#cureCF #mucovisidose #mukoviszidose #fibrosicistica #cfresearch #cfawareness #cističnafibroza #cystikfibros #fibrosiquistica #муковисцидоз


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It's important to take time for yourself 💜|| Sorry we've been a little bit MIA lately!! Tiff has been busy living it up with her new lungs & CF life has been a little bit of a roller coaster for me both physically & emotionally. Life can get busy, hectic, & overwhelming even when you don't have CF or chronic disease. Then you add that on top of it & sometimes you feel like you can't keep it all together. The biggest take away I have from the past couple of weeks is:
1. Always remember it's important to take time for yourself 🤗
2. It's okay to say no & cancel plans if it's not a good lung/ health day 🙅🏻
3. It's okay to have days you get upset & frustrated but it's important to remember to try to never stay in that mindset & be as positive as possible ✨
4. Positivity can get you through anything in life ❤️

Hope you all are having a happy & healthy week!!

❌⭕️❌⭕️Lea


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65 Roses! Take some time out of your day and share this post or find other ways of spreading awareness!
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65 Roses Background: The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as "65 Roses." Today, “65 Roses” is a term often used by young children with cystic fibrosis to pronounce the name of their disease. (@cf_foundation)
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#cureCF #mucovisidose #mukoviszidose #fibrosicistica #cfresearch #cfawareness #cističnafibroza #cystikfibros #fibrosiquistica #муковисцидоз


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