#CFawareness

MOST RECENT

It’s Friday night! You’re wondering what should I do tonight before bed. Well we have a suggestion! Click the link in our bio to go watch @defytobreathe new video on spirituality with CF!!! What do you believe?

An uneventful Friday night spent doing treatments & my deep breathing regimen. I'm rockin' with 40-42% of my lung function, so I gotta be extremely diligent with my schedule & make sure I don't miss any treatments.

As I keep improving, that number should go up, I'm aimimg for 50%, which I feel is attainable as long as I'm consistent. My treatment schedule probably doesn't look a whole lot different compared to other CFers: -45mins of the Vest (can't wait to get the portable one!)
-Albuterol 💨
-Pulmozyme💨
-Tobramycin this month (Cayston every other month)💨
-Symbicort inhaler💨

Once I'm done with my nebulizers though, I do my own series of lung expansion exercises & treatments that I feel make a big difference for me in tolerating exercise & catching my breath faster. A nice side effect is also reduced #anxiety

Lung incentive spirometer (pictured): I'll typically do 20 tries after my treatment & try to reach a higher number each time. Right now I can hit about 2500ml on my best try. My goal is 3000ml. After each inhale I will hold my breath for 5 seconds & exhale all the air in my lungs as slowly as possible.

Acapella unit (pictured): As great as the vest is, nothing makes me cough like this little gizmo does. On the days where I feel like I can't bring much up, this device really helps. I do 10-15 tries & exhale every drop of air I have in my lungs, basically til I'm purple in the face lol..huffing that hard is imperative for me to get all that deep rooted shit out of my lungs.

Short meditation session: After coughing my insides up, I use this as my "cool down". Despite it being relaxing, I still make sure I'm inhaling as deeply as I can & exhale everything I have in me out. I aim for 5-6 second inhales, hold the breath for 5 seconds, then exhale slowly for a count of 8-10.
I do full rounds of treatments & lung exercises twice a day, but do additional albuterol nebulizers every four hours.
#cysticfibrosis #cfers #cfawareness #cysticfibrosisawareness #bodybuilding #fuckcf #findacure #medicine #fitness #lungs #health #cysticfibrosisfoundation #lunglunatic

Summer weekends mean lake days! 🍉☀️🙌🏼 Who else is excited for the weekend? #HappyFriday and #HappyWeekend everyone!
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#cureCF #CFirl #CFawareness #cysticfibrosis #cltstyle #charlottesgotalot #lakedaysarethebestdays

A little progress each day adds up to big results 💪💜
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This morning I start my first personal training class in approximately 5 months!!😅
Okay counting that out kind of scared me a bit I won't lie!
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I'm really excited to get the lungs burning and a release of all those lovely endorphins again. It's been far too long 💜
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#CFWarrior #cysticfibrosis #65roses #cfawareness #CFWarrior #gymgirl #workout #pt #personaltraining #mytime #gainz #physiotherapy #bondi #lifeunlimited

We were so excited to have @cardmyyardmurfreesboro to help us celebrate Madilynn’s birthday again this year!! 💜 #cfprincess #cfawareness #cfbebraveformadilynn #cfirl #cardmyyardmurfreesboro

BREAKING NEWS: In-store promotion for my fundraising event to benefit @cf_foundation - North Central Florida Chapter tomorrow, Sat. 7/21 from 11am to 2pm hosted by @KendraScottOrlandoMillenia: Beginning at 10am KS is doing a Gift With Purchase for each customer who spends $100 they will receive a free pair of KS Aragon Earrings in White Howlite ($80 value, holy 🐄!!). Remember, 20% of your purchase goes to CFF! 👀❤️🛍 Come visit me in store or call in your order 321-251-3309 (FREE shipping). http://ow.ly/mqKZ50i2q69
#CysticFibrosis #LifeWithCF #CFlife #CFawareness #CFadvocacy #CFfighter #OrlandosFinest #CysticFibrosisFoundation #SupportCFF #SupportAGoodCause #Fundraiser #FundRaiserEvent #July212018 #ShopInStore #MallAtMillenia #OrlandoFL #CallInOrder #GiftWithPurchase #OrlandoFinest #LoansByTara #KendraScott #KendraScottGivesBack #KSValuesFamilyFashionPhilanthropy #ColorBar #DesignCustomJewelry #CustomJewelry

The endless cycle of a CFer 🤒.
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I got a full week of feeling pretty good, but then over the weekend that all changed. It started with me losing my voice (I call it my sexy voice, don’t ask). Next, I started getting this nasty junky cough, chills and obviously more mucus production.
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This called for another doctors appointment, but what happens when both your doctors are not in the office? Well I decided to go to Urgent care for the first time ever. I always felt strange going to urgent care because 1, I usually get in with my pulmonologist 2, I have more priority and extra care at my CF doctors and 3, I trust no one.
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Surprisingly, it wasn’t as bad as a I thought. The doctors were super nice and took great care. With Dr. Kim still in the know, the urgent care doctor checked my lungs and put me on some new meds.
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Fingers crossed that this time around I stay healthy for a little longer than a week 🤞.
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#sick #coughing #cfawareness #cysticfibrosis #cf #salty #urgentcare #cyster #cfer #meds #medication #sistertime #kates_race_to_breathe

😱😱Llego el gran día! En unos minutos empieza Javier Prieto su Everesting Challenge!➕ Javier, te deseamos toda la suerte del mundo. Es un reto muy complicado, imposible para el más común de los mortales. 💫Pero sabemos que tu alma de #arnasafighters te llevará a culminarlo.💪💫
➡️Javier, gracias por tu dedicación a Arnasa Araba… Ha sido una suerte que te hayas cruzado en nuestras vidas… 🍀🍀🔶️Como siempre decimos, la FQ ha traído cosas horribles a nuestra vida, pero también nos sirve para conocer la mejor parte de la gente. 🔶️Besos Salados y ánimo. Eres nuestro #arnasafighters.
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😱😱Eguna iritsi da! Gaur gabean Javier Prieto Everesting challenge erronka hasiko du! Zorterik oberena opa dizugu Javier!!➕ Oso erronka zaila da, ia ezinezkoa. Baina badakigu zure #arnasafighters arimak erronka burutzera eramango dizula!💪💫
➡️Eskerrik asko Javier zure dedikazioarengaitik Arnasa Arabarekin…Zorte bat izan da gure bizitzan elkar gurutzatzea…🍀🍀🔶️Beti esaten dugun modura, FK gauza oso txarrak ekarri digu gure bizitzara, baina baita ere pertsonen gauzarik oberenak erakutsi digu. 🔶️Musu gazi Potolo bat eta adore. Gure #arnasafighters zara.
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😱😱Today is the day!!! This night Javier is beginning his Everesting Challenge!! Javier, we wish you luck!! ➕It is a very complicated challenge, impossible for almost everyone. ➕But we know that your #arnsafighters soul will help you to win!💫💪
➡️Javier, thanks million for your support to Arnasa Araba. We have been very luck to bump into you…🍀🍀🔶️ As we usually say, the CF has brought terrible thing to our lives, but in the other hand we are able to meet amazing people, like you. 🔶️Salty Kisses and cheer up! You are our #arnasafighters
#fibrosisquistica #fq #dandoalientoalosbesossalados #arnasaaraba #ORKAMBIya #besossalados #deporte #arnasafigthers #everestingchallenge #bicicleta
#fibrosikistikoa #FK #musugazieiarnasaematen #musugaziak #ORKAMBIorain #kirola
#cysticfibrosis #CF #blowingencouragementtosaltykisses #saltykisses #CFlife #cysticfibrosisawareness #cfawareness #ORKAMBItnow #cfwarrior #sports #bicycle

🌹🌹Gracias a @eroskioficial por su donación de alimentos y bebidas para el pintxopote del Everesting Challenge!! 🍗🥂➕Eroski es un mercado de confianza que apoya a causas solidarias como esta! ➕Los #arnasafighters os lo agradecemos con todo nuestro corazón salado!❤
➡️Os esperamos mañana a partir de las 12:30 en la sociedad Bombalatxi de Peñacerrada! ⭕El 100% de los beneficios se destinará para derrotar a la FQ: para el pago de sesiones de fisioterapia respiratoria y para inversión en investigación⭕. FQ: vamos a por ti!! Go go #arnasafighters!💪💪
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🌹🌹Eskerrik asko Eroski gurekin parte hartzeagaitik Everesting Challengeko pintxopoterako janari eta edariak emanez!! 🍗🥂➕Konfidantzako merkatua horrelako ekintzekin beti euskarri izanez!! ➕#arnasafighters benetan bihotz bihotzezez asko eskertzen dizuegu.❤
➡️Bihar itzoiten zaituztegu Urizaharaako Bombalatxi elkartean!⭕ 100% onura arnas fisioterapia eta FK-ari irabazteko ikerketarako erabiliko dugu!! ⭕Go go #arnasafighters💪💪
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🌹🌹Thanks to Eroski for the food and beverages donation for the Everesting Challenge pintxopote!! 🍗🥂➕A trustful market which supports charity initiatives like this!➕ Our Salty #arnasagihters hearts are very grateful!!❤
➡️We will be waiting for you tomorrow from 12:30 am in the Sociedad Bombalatxi in Peñacerrada! ⭕The 100% of the benefits will be destined to fight the CF: for the respiratory fisioterapy payment and to support investigations. ⭕CF: we are after you! Go go #arnasafighters!💪💪
#fibrosisquistica #fq #dandoalientoalosbesossalados #arnasaaraba #ORKAMBIya #besossalados #deporte #arnasafigthers #everestingchallenge #bicicleta
#fibrosikistikoa #FK #musugazieiarnasaematen #musugaziak #ORKAMBIorain #kirola
#cysticfibrosis #CF #blowingencouragementtosaltykisses #saltykisses #CFlife #cysticfibrosisawareness #cfawareness #ORKAMBItnow #cfwarrior #sports #bicycle

Tomorrow is my @cf_foundation - North Central Florida Chapter fundraiser towards my $2,000 fundraising goal. Feel free to shop/order/invite/share the event http://ow.ly/J0r450i2pNa

20% of all sales from 11am to 2pm in-store or by phone (free shipping) 321-251-3309 @KendraScottOrlandoMillenia will be donated back to the Cystic Fibrosis Foundation (CFF). #CysticFibrosis #LifeWithCF #CFlife #CFawareness #CFadvocacy #CFfighter #OrlandosFinest #CysticFibrosisFoundation #SupportCFF #SupportAGoodCause #Fundraiser #FundRaiserEvent #July212018 #ShopInStore #MallAtMillenia #OrlandoFL #CallInOrder #OrlandoFinest #LoansByTara #KendraScott #KendraScottGivesBack #KSValuesFamilyFashionPhilanthropy #ColorBar

Couldn’t make it to the 2018 EENY event? Or want to relive the magic of the night!? Now you can!
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Check out our blog post (link in bio) recapping the record-setting evening. With a live graffiti artist, the “Kardashian photo booth,” an aerialist bartender, big name DJs, and more – we went ALL out! See the details of this one-of-a-kind EEvening that raised over $149,000 raised to accelerate research and drug development for CF!!! Thank you to everyone in this mighty entourage who made it possible!!!
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#EENY #cureCF #CFawareness #CFaware #beatCF #cysticfibrosis #emilysentourage

If I want to stay alive I have to stay consistent with every treatment, pill & gym session but also know when I need a day of rest! I can't slack or that may mean a day I don't get to be blessed with. What makes you stay alive? Are you even appreciating the breaths you take or are you just taking them for granted? 🤘🏼😛🌹
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#breatheeasy #daily #motivation #breathing #65roses #cysticfibrosis #rhuematoidarthritis #cfawareness #believe #lungdisease #treatments #fit #fitfam #goals #alive #fitness #gymaddict #gym #journey #slayday #pills #nebulizers #stopcomplaining #kalydeco #tobi #antibiotics #albuterol #hypertonic #dornase #strongwomen

At the end of the day, we can endure much more than we think we can ⭐️ || Love that I’m feeling like myself again! The Los Angeles sunshine is good for my soul and good for visits! UCLA has the most fabulous outside patio to sit on. It has lush green turf, trees to lay under on a blanket, and tables to picnic at! Today is a good day full of smiles! • I’m on my way into interventional radiology to look at my feeding tube again. The question is if the coiling of my jujunal tube is causing my discomfort and nausea. We’re hopeful this procedure will give us more information. As we wonder about this issue my transplant doctor, as well as myself and family, are faced with the question if a jg tube is still the appropriate choice for me; especially now that I’m not using it for feeds, or if changing to g tube would be better. The g tube would still allow me to administer medications and bowel regimen medication if needed and allow for more invasive things such as suctioning and draining my stomach during dios admissions. This would be a HUGE change/decision for me because in the past we know my feeding tube has been essential to keeping me alive during critical emergencies by providing me nutrition. It is so scary to make choices for my future in hope that I continue to improve knowing my past. One thing I have to remember is a positive mind brings positive experiences! • GJ-tubes are placed in the stomach just like G-tubes, but a thin, long tube is threaded into the jejunal (J) portion of the small intestine. Most often the J-port is used for feeding and the G-port is used for venting and sometimes for medications. #fight2breathe #cysticfibrosis #65roses #curecf #cfawareness #unos #donatelife #recycleyourself #doublelungtransplant #seconddoublelungtransplant #ucla #gobruins #gi #dios #tubie #feedingtube

SALTY CYSTER TAKEOVER PODCAST💁🏼‍♀️💁🏻‍♀️|| This week we takeover the podcast without Gunnar! This time with our returning guest, @lovetobreathe, to talk all about social media. We dive into why we use social media, how it has helped cf communication and friendships, and the positive influences it has brought to all 3 of us💜.

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 😀. This podcast gives great advice on how to use social media to make it the best & most positive experience for you!!

To listen, go to @breathe_in_pod bio or head over to @itunes (REMEMBER: subscribe, rate l, and review 👍🏻👍🏻👍🏻) and @soundcloud, or to watch, gunnaresiason.com 🤗🤗🤗

❌⭕️❌⭕️ Tiff & Lea




#saltycysters #cyster #fibro #cysticfibrosis #curecf #cfawareness #cf #organdonation #organdonationawareness #recycleyourself #donatelife #taylorswift #lungs4tiff #health #love #hope #TiffGotLungs #community #laugh #dream #cure #doublelungtransplant #donatelife #podcast #breatheinpod

My current transformation story:

These photos are taken exactly six weeks apart in my return to the gym after a nearly four year break due to health difficulties. Aside from the workout here & there, I was never able to get back in the full swing until just recently.

Since my last serious period of training those four years ago, I've had blood clots, numerous surgeries, doctors telling me I was doomed to a lung transplant, & hospitalizations that exceeded my time spent in the comfort of my own home living by my own terms. There is no worse feeling than that of being a caged animal that wants to fight & kill what's killing you, yet your body tells you otherwise

I kept telling myself, all I needed was a small window of opportunity & some gas in these lungs of mine to give it another serious go. I'm only six weeks in, but I'm about 28lbs heavier (empty stomach weight) than I was in the first picture, & my lungs feel better than they have in years.

It wasn't possible for me to do this alone & I owe a serious amount of gratitude to the folks at @athleticfactorgym for being my home away from home & supporting me in this comeback, as well as the incredible staff at @tridentantiaging for taking care of me & doing what my pulmonary doctors refused to do & address my #testosterone levels being shot from years of cystic fibrosis wear & tear.

I also attached some old pics of me here so you guys can get an idea of the ghost I'm chasing after each time I hit the gym. I want to beat that guy, the dude I was years back before my lungs collapsed before my first bodybuilding show, before the clots, before the endless bullshit I've had to endure. I've knocked & knocked & knocked on the door of opportunity until it had no choice but to open up for me. I won't stop until I make that ghost I chase after daily look like a joke.

I'll post more on how I continue to change daily physically in future posts 💪

#cf #cysticfibrosis #cfawareness #cysticfibrosisfoundation #cysticfibrosisfighter #fuckcf #health #fitness #bodybuilding #fitnesstransformation #transformation #lunglunatic

Happy Big Girl Birthday to my Little Glam Girl! We love you so much.🎂🎉🎂👸#Repost @beccangoodwin with @get_repost
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Happy 2nd birthday pretty princess 👸🏽 #cfprincess #cfbebraveformadilynn #cfawareness 💜 Can’t believe your TWO tutti-fruitti 🍉🍍🍒#lovemylife #happybirthday #myheartisfull #glamma #shestwo

Happy 2nd birthday pretty princess 👸🏽 #cfprincess #cfbebraveformadilynn #cfawareness 💜 Can’t believe your TWO tutti-fruitti 🍉🍍🍒

Hurrah! It’s Friday 🎉 #tgif #tomorrowsleaders

Feeling a bit unwell 🤒 but nothing can beat a comfortable bed with Tipping Point on the TV 😂 (showing my age and how excitable I am 😐) #apology #livinglifeontheedge #ill #bed #recovery @itv #itv #itvtippingpoint #tippingpoint #cysticfibrosis

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