•| Unbreakable |•

Exactly 3 weeks from 6 years old and not even 40lbs. Gaining weight is, hands down, Pax's biggest issue. Height wise she's doing good, weight wise she's not. Gtube, night feeds, appetite stimulant mixed with a picky eater with no appetite means slow to no progress. Yogurt, cheese, fruit snacks, and grits are about the only guaranteed foods she will eat. The CF causes her to not absorb the food and the UC and CF cause her to not want to eat the food.
#purpleforpaxton #cfwarrior #supertubie #ibdfighter #ibd #ulcerativecolitis #cysticfibrosis #cysticfibrosisawareness #cfawareness #cfsucks #curecf #65roses #justbreathe #saltygirl #fucf #day20 #cfspamallmonth

das schönste Kind der Welt ❤
#cf #cfwarrior #cysticfibrosis #proudmum #love

The view from the top 💜

It’s been a challenging week, but all in all, Serena is stable; her white blood count is down (responding to treatment) and we’re working to get the tube-feeding process squared away. The model of care here is drastically different than that of our previous hospital. Whereas Serena (and all cystic fibrosis patients) were secluded and insulated from the rest of the hospital population, cystic fibrosis patients here are generally mainstreamed and their care overseen by a team beyond pulmonologists. Good thing? Terrible idea? There’s certainly merit to both models, but what struck me today was this: a more inclusive model of care for cystic fibrosis means that it has evolved from its terminal/life-shortening status, to a chronic condition that needs to be addressed and cared for on ALL fronts, not just pulmonology and GI....and isn’t this wonderful and true for EVERY “condition”? It’s so easy to fall into the trap of “conventional wisdom” (I fall in there all the time! 🤣), but when we open ourselves to seeing from a different view, a different perspective, we open ourselves to new possibilities and to healing that was inaccessible to us before. 💜 #learningnewthings with my #cfwarrior @serenasilver and my #sweetheart @camillesilvestro

Don’t stop when you’re tired. Stop when you’re done. 9 hours of training done this weekend and feeling stronger on this journey compared to last year. Possibilities are endless when you open your mind 🙌 #24hrs4cf -
#motivation #fitness #fitnessmotivation #cardio #workout #fit #cysticfibrosis #beatcf #justbreathe #cfwarrior #goals #inspiration #beastmode #fitspo #instafit #fitfam #fitfamuk #feelgood #train #getfit #scar #scars #physique #tattoo #inkedmen #inked

je me rappelle la veille de l'opération j'ai été marcher dans les couloirs en me disant qu'après l'opération je ne pourrais pas marcher, j'en ai pleuré parce que je savais a quoi m'attendre avant même d'être opérée, j'ai regardé mon ventre et supplié bêtement la muco d'arrêter son carnage dans mon digestif alors elle s'est mis en avant pour attaquer mes petits poumons qui était déjà bien encombrée avant même d'être opérée " bon Vanessa on va te mettre des antibio tu as de la bonne compagnie dans tes poumons" tiens tiens sa expliquerait la fièvre qui est partie l'encombrement et les sifflements, bizarrement je préfère qu'elle s'attaque un peu à mes poumons qui vont bien, en fait non je préférais qu'elle me laisse du répits pour des mois j'y crois même si après 2 ans elle ne m'en a pas laissé beaucoup... Silence muco !! #cysticfibrosis #cystiquefibrosic #fibrosekystique #muco #mucoviscidose #hopital #operation #warriors #cftr #cfwarrior #respire #curecf

Got to escape the hospital for a few hours today, so where else do I go but straight to Connor and Jess house to get some cuddles in with my main girl 😍😍

Having CF can be incredibly exhausting...not only because the amount of strain put on my body just to breath (this was a huge issue before my transplant, but not so much now). But on top of that there is also all the time and effort spent doing medications and treatments to keep the symptoms under control as best as possible.
It can be a vicious cycle, if I didn’t have the energy/time to do treatments which made the symptoms worse which in turn made it even harder to find the energy to do the treatments and so on...there are no days off when living with CF.
For most of my life I avoided getting a port and instead got PICC lines in (📷 #3). In 2013 I eventually got a port put in my chest and it was amazing. Unfortunately they had to take it out during my transplant surgery as it was a risk of infection. I really miss the convenience of the port when I require IV’s.
📷 #4 shows a graph that depicts the implementation of new medications and the effect that had on increasing the life expectancy for CF. .
The more targeted treatments that have been developed have made an incredible difference to not only the life span of CF but also the quality of each day. The current average life expectancy in Australia is 38, this is great compared to what it was when I was born, in the 80’s it was 14. But we definitely need to keep working on finding a cure so that one day CF will not have a life expectancy and it won’t impact anyone’s quality of life 🤞🏻🤞🏻.
#cysticfibrosis #cfawareness #doublelungtransplant #cfawarenessmonth #portacath #piccline #chronicillness #lifeexpectancy #nooffdays #findacure #cfwarrior #survivor

Double strength Zopiclone & Lorazepam got nothing on prednisone 😑 1:30 A.M. wide awake! Even though being awake 97% of the time is awful, I’m not in the hospital so today i will be thankful for that and look for something to cover up these dark circled, raccoon-eyes. If only malls were open at this time...talk about lots of parking spaces! #cfwarrior #cfawarenessmonth #prednisoneproblems #itsokayidontneedsleep #startingtothinkimayneedatranquiliserdart

This gives a snipit into the last 9 years of medical advancements in the CF world. When I was diagnosed, the prognosis was late teens, to early 20’s but here I am at 25 doing everything I can to prolong the progression of my CF. Had I gone into respiratory failure during those early research years, I truly believe I may not have been as lucky as I was to walk out of the hospital. This is why research is key...support us on Sunday May 27 as we FIGHT TO END CF! https://secure.e2rm.com/registrant/mobile/mobilePersonalPage.aspx?registrationID=4122156&langPref=en-CA&Referrer=%26Referrer%3ddirect%252fnone#&;panel1-1 #cfwarrior #thyssenkrupp #cfcanada #endcf #puckcf #ilovemyjob #tellyourstory #beattheodds #persevereandovercome #everydollarcounts #happy10yearanniversaryteamm&;m #seeyouatthebeach #gottawalkdownthataisle

This #mama is #happy and #tired and #proud and #sad all at the same time. My #cffighter Evan graduated from high school today. I cried and laughed and rejoiced and celebrated. I’m so proud of him. He is a pursuer of knowledge and truth and walks in such integrity. He is tenacious, resilient and never fails to make us laugh! #God has such brilliant plans for my #Evman. #lovehim #graduate #highschool #graduation2018 #graduation2018🎓 #cf #cysticfibrosis #cfwarrior #65roses

Someday there will be a new wing open for CF inpatients! Not that I want to be admitted ever again, but it’s good to know updated facilities will be available if need be 🤞🏻🇨🇦🌹 #stmichaelshospital #cfwarrior #cfcanada #lookspretty #endcf #newunitnewproblems #hightech #thyssenkrupp

31 Days of Cystic Fibrosis. May 20
The chat you never want to have with your doctor
After my Egypt trip, I managed to raise my lung function to 50% and then winter arrived, bringing with it another bout of infections. The hard work I had done was wiped away, and my lung function dropped right back to 30%. This time HITH didn't work at all, and after four weeks, I was admitted to Charlies. I spend the first few days on oxygen, then only required oxygen at night as I slept. For the first time, the team got me to try prednisone which proved extremely effective in reducing the inflammation in my lungs. My veins would no longer cope with a PICC line, so it was time for a more permanent solution and get a port-a-cath inserted near my left clavicle.
Nearly the whole admission past without me seeing my specialist (affectionately known as Uncle Gerry). I knew he’d been making the decisions for my treatment plan, but I hadn’t laid eyes on him myself. I joked with the staff that perhaps I should head on down to the clinic and make an appointment time.
The day before I was discharged, ward rounds came and went as usual, then that afternoon Uncle Gerry popped in unexpectedly to have a chat with me. It was, he said, the chat he never thought he would have to have with me. He thought he’d retire before I reached this point. And my heart stopped beating for a moment. Because it was the chat you never want to have with your doctor. The one where he tells you that there’s nothing more he can do. There are no other treatment options to try. That’s it time to make a decision and be referred to the transplant team.

#cysticfibrosis #31daysofcysticfibrosis

When you go for a quick post dinner jog and somebody cheers Rocky! from their car . 👌🏼🇮🇹 #workout #gym #gymselfie #cfwarrior #cysticfibrosis #exercise #heath #fitness #rocky #italian #italia #rain #track #weekend #postworkout

Happy Birthday @rejectinglaurenrowe . You are the definite queen of our jungle. Hope you have a rip roaring time today.
Michael, Heidi & Monroe

#birthday #supergirl #supermodel #bff #friend #beauty #cfwarrior #organdonationawareness
#fujifilmx_au #fujishooters #fujifilmxt2

Позади два напряженных рабочих дня, с полным погружением в дела не семейные. Уже третий год я - #волонтер на врачебных и пациентских конференциях, которые проводят @bfostrova, потому что точно знаю, мой, пусть и маленький, вклад в организационные заботы благотворительного фонда помогает большому делу. Тот колоссальный просветительский труд, который ведут Острова в нашей стране сложно переоценить.
Нынешняя #конференция получилась очень насыщенный, невероятно интересной, и надеюсь, "практически" полезной. Для наших врачей это замечательная возможность встретиться со спикерами с мировым именем, обсудить проблемы и новые подходы к лечению, подискутировать на острые темы, подумать, посоветоваться с коллегами со всего мира.
Не передать, какое невероятное чувство возникает у меня, когда я вижу людей, которые всей душой болеют за дело, которые знают каждого своего пациента со всеми особенностями терапии и микробиологической картины. Которые искренне говорят : "Мы вместе боремся за жизнь". Когда я вижу по-настоящему неравнодушные глаза пульмонологов, микробиологов, трансплантологов.
Мы боремся за жизнь, вместе. Именно так. Спасибо.

#муковисцидоз #муковисцидознеприговор #мв #cf #cysticfibrosis #cfwarrior #65roses

One of my #favoritecaptionoftheday #cfwarrior Congrats Vincent! You did it. Grammy loves you😘

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