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#cysticfibrosis

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Do something today your future self will thank you for 🌀☀️ || Believe in yourself and you will be unstoppable! • Enjoying a positive day off from the hospital by relaxing at home, jacuzzi'in, dinner with my dad and a movie! Happy Friday everyone! #StayWell #BeHappy #fight2breathe #cysticfibrosis #65roses #curecf #cfawareness #unos #organdonation #donatelife #recycleyourself #doublelungtransplant

Fun Fact Friday! Always be prepared with your meds!💊 Yesterday the mountains 🏔taught me that I should always bring my whole days worth of pills just in case. Thankfully Laima suggested yesterday morning before our hike that I should pack my 8pm dose. As we were on our way out of vail to head home the traffic going east on route 70 was stopped. We could see traffic piling up and cops stopping traffic on the exits. Apparently there was an 18 wheeler that rolled over into the opposite lane and went into the trees and started a fire.(hoping everyone involved is okay). This closed the highway for 4 hours minimum but were told more likely 6-8 hours.... so we had to find an alternate route. See, 70 is the main highway that goes through the mountains and if an accident happens then it can affect everyone. So as a good habit to start, bring enough meds for the whole day... usually I do for enzymes but now I will for everything. ♻️💜💊
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#lungstoryshort #cysticfibrosis #cfawareness #65roses #curecf #newlungs #doublelungtransplant #transplant #organdonation #donatelife #cff #posttransplant #antirejection #meds #pills #alwaysbeprepared

For those of you that don’t know I’ve been in the hospital since last Friday admitted with a blood clot and pneumonia. I had been on home IVs for almost ten days where I had an episode while driving where I couldn’t breathe and couldn’t catch my breath. I ended up pulling over and then getting taken to the ER. I was pretty sure I was going to pass out I’ve never experienced something like that in my life. But these last two days I’ve finally been feeling better and my lung function is up slightly to 45% and feeling better by the day. Hoping to be released soon. I’m thankful to have so many people supporting me and reaching out. Having Ambs here almost every day definitely makes things easier. And my mom and brother has visited almost every day also. Today when my little bro @juliankalfus came he tracked our walk and it’s the first time I’ve felt that good while walking and doing some jogging and hills in quite some time. Just taking it one day at a time. #cantstopwontstop #fuckcf #65roses #sixtyfiveroses #cysticfibrosis

Your idea of marriage on the wedding day vs. day-to-day reality...which I'm totally ok with for the record 😉
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"In sickness and in health" becomes R E A L after 14 days in the hospital...good news is we are home now, in OUR OWN BED, and looking back on a successful and (thankfully) uneventful tuneup. Of course man candy took it like a champ, and we are reminded that He is so faithful...to heal us, to sustain us, and to provide for us. We are so grateful for every call and text, every visitor, every person that dropped off food, and of course the wonderful staff at UAB that took such good care of Shawnie. Shawnie's lungs are looking good, and our hearts are so full ❤️ #cysticfibrosis #cftuneup

I had a great day with our friends, which unexpectedly ended with a strange headache out of no where... I'm thankful that meds have kicked in and the ice pack is also helping! Ouch. Part of it. Just keep swimming #cysticfibrosis #doingmybest #headache #thefreylife #reality #goodfriends

#Cysticfibrosis doesn't take a break, and treatments don't stop just because you're on vacation. Tell us in the comments👇: How do you keep up with your treatments when you're on a trip? #CFirl #CFawareness #LifeWithCF #CFLife

Ich kann dich nicht retten, aber ich kann dich lieben. Ich kann versprechen für dich da zu sein, wenn deine Welt ins wackeln kommt oder dabei ist einzustürzen. Das ich da bin wenn deine Träume platzen und ich werde für dich da sein wenn du auf dem Boden aufschlägst, weil das Leben die Pläne gegen dich ändert… -
#cysticfibrosis #positivevibes 🌹

Sometime over the course of taking 5,305,130 steps, I designed this in my head. Awesome to see it come to fruition today. #breathtaking4cf #adventureheroes

thank you everyone who has messaged me about being in the hospital! 🙏🏻💗 as of now, the plan is to keep me here until monday. i'll be resting and eating and letting other people take care of me ☺️👩🏻‍⚕️🏩 and sneaking in yoga and walks around campus when i can.

#foldintofall day four: standing marichiasana a or as i like to call it, "folded flamingo pose thing" 😉

hosts:
@alexzandrapeters (posting tonight)
@livinleggings
@wildernessyogini
@yogaandchaigirl

sponsors:
@aloyoga
@yogisurprise
@byoganow

remaining poses:
standing split
marichyasana b
wide legged forward fold
super soldier
tortoise
compass chair variation
janu sirsasana
headstand with wrist tap

MOST RECENT

N’oubliez pas les virades de l’espoir.. allez donner du souffle à ceux qui en manquent ! #dondusouffle #mucoviscidose #cysticfybrosis #cysticfibrosis #abonnetoi #like4like #followme

Gf again posting for Tom;

Unfortunately Toms heart is not recovering as hoped. The left ventricle has improved 50% since surgery, but his right ventricle is totally inactive. This week Tom was weaned from sedation and has been awake. However he cant speak due the ventilation and the pain medications act as sedatives in a sense, so he isnt totally aware. He is uncomfortable and still attached to ECMO via the femoral arteries, so he cant bend his legs or be seated up. His is starting tk slowly regain control of his arms though.
His new lungs seem to be clear and healing well! Xrays and Bronchs are being done every few days. He even had a period during the week where he was taking breathes by himself and the ventilator was only helping with positive pressure.
His kidneys has been off dialysis since last weekend!
On Wednesday a tracheostomy was done so Toms mouth is clear and he can speak eventually.
Unfortunately his blod pressure is up and down and he has needed a few units of blood this week. He has also been getying tachycardic and doctors are trying to figure out why.
Finally, todays aspiration (draining his stomach contents before putting them back in) had blood in it, so he is currently getting an endoscopy.
Monday will be the 15th day in hospital for tom and the doctors will convene and decide if Tom should be listed for a heart transplant.
Once again, thank you all for the messages and love ❤❤❤
#cysticfibrosis #cf #cysticlife #lungtransplant #transplant #icu #survivor

Have a neb whenever-wherever. Nebulisers were once a ball and chain, and it used to suck I would never be able to take one out but as I have become more dependent on them it just so happens technology caught up. Now I have a neb anywhere, including in a Michael Kors changing room in Las Vegas 😏 #cysticfibrosis #cflife #nebuliser #neblife

Spotted this vehicle outside of TGH today~hope someone was fortunate enough to have received lungs.💜♻️🏨 #TGH #TorontoGeneral #DonateLife #BeADonor #SafeALife #NeedNewLungs #CysticFibrosis #Transplant #TarasTransplantTimes2 #SecondTimesTheCharm #RoutineAppts #Trillium #GiftOfLife

5km run tonite in memory of our beautiful friend Amie... We love you and miss you ❤ #glowrun #cysticfibrosis #kinettes

Forever grateful to have you by my side through my hot mess of a life,I love you @codyneedashower 💕 #cfsucks #cysticfibrosis #fucf #hospitallife #loml #mynumberonefan

YES last to the finish line, the smile is because I know I'm better today than I was yesterday ...can't ask for more than that. Striving for progress 😁 22km Done ✅ #bethebestyoucanbe

After a long warm up and a few pain killers I decided to tackle my lung run today, I wasn't sure how I would run due to neck and shoulder stiffness but I was determined to better last weeks run of 21kms. I had to push through the pain barrier in the last 5kms but it was worth it to get a step closer to the NY marathon! Many people have an option to push through these physical and mental barriers unfortunately CF suffers don't have an option, they push through so many challenges just to stay alive. A research team in adelaide is working hard to find a cure, but we need your help to speed up this process. If you would like support and donate please follow this link, every dollar counts big or small. Thank you! https://hero4hope.everydayhero.com/au/melissa-haynes-ny-marathon-2017

As I get prepared for Sunday's Stairclimb in Portland, and tape up my helmet, I know Carson and Brandon will be there every step of the way. #cysticfibrosis

The text says: because 75% PFTs are 25% too low. I’ve gone to @purebarrewa every day this week (more than halfway to 20 in a row again, yesssss). I’ve walked a ton. I’m taking my antibiotics. I refuse to accept the 16% drop in PFTs since June. They WILL go back up, and I WILL work my ass off to get there. #theykeepyoyalive #cfworkouts #cfirl #cysticfibrosis #barresohard #backtobarre #rockcf #barre #fitbit #stepbet

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). In the 1950s, few children with cystic fibrosis lived to attend elementary school. But today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. #cysticfibrosis #firefighterstairclimb #portland #2017

Courage is a tough thing to figure. It is a word I have found myself associated with throughout my life; as if it were a characteristic, but I do not believe that is true. I did not chose my circumstances. They chose me. I just chose to act on them in a certain way; a way in which my short term decisions would align with my long term values. That is something of which I am very proud of. I guess that is what you are referring to by the word courage. But, I believe that courage is a choice. Like who wakes up saying, I'm feeling crazy courageous today! Nobody. EVER. Courage requires you to leave your comfort zone. If you are not leaving your comfort zone, it is not courage. // Choose courage whenever you have the choice. You won't regret it. Disclaimer, I am not advocating that everything will always work out, because it doesn't. I strongly disagree with the ethic that says "jump, and the net will catch you." But jump anyway because that's what you believe in. In the words of Maya Angelou, "The risk is high; the reward is great." #CysticFibrosis #CFAwareness #CFirl #LifeWithCF #65Roses #OrganDonation #DoubleLungTransplant #UNOS #RecycleYourself #RegisterMe #DonateLife #DearDonor #ChooseCourage #SickIsStrong #PatientPride #PulmonaryRehab #Brown

Thank you, @jimmykimmel (@jimmykimmellive), for mentioning Cystic Fibrosis. People voting for this bill don't realize how many people will die because of it. ObamaCare HELPS. Please, we cannot let this bill pass. Not just for me: for this entire country.



#cysticfibrosis #cfawareness #obamacare #healthcare #jimmykimmel #actor #actress #acting #filmactor #filmacting #film #utahfilm #utahactor #utah #blonde #blondehair #browneyes #makeup #makeupartist #mua

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