#65roses

Instagram photos and videos

#65roses#cysticfibrosis#cf#cfawareness#cysticfibrosisawareness#organdonation#chronicillness#cfwarrior#lungs#health#justbreathe#doublelungtransplant#photography#lupusawareness#autoimmunedisease#fitness#cfer#breathe#maladiechronique#cfirl#fibromyalgia#cancerawareness#crohns#cfstrong#invisibleillness#healing

Hashtags #65roses for Instagram

by @kidbreaks

At the synthetic pro audio store Livestream started! Go check it out on the synthetic pro audio Facebook page!
P. S link in bio ---------------------------------------------------- #DJ #Djing #music #breakbeat #brokenbeat #dance #dancemusic #cdjs #pioneer #pioneerDJ #pioneerglobal #pioneeruk #djkit #livingthelife #hobby #passion #photography #virtualDJ #seratoDJ #serato #stantonwarriors #traktor #kidDJ #kid #cysticfibrosis #cysticfibrosisawareness #cf #cfawareness #65roses #cysticfibrosistrust


0

by @cfsussexdude

Yaaah uh!
Only joined here this week, haven't been in a gym for a while, I have been working out at home all summer, and outside. Weather was amazing so wanted to be out in it.
If you go to a gym, and you get bored of it, mix it up! why not try being outside more in the summer? Freeze that membership next summer ppl get out in that fresh air and get some vitamin D!! We all hate the "you look ill" or "you're looking a bit pale" too! 👊👍😊
#cf #cysticfibrosis #65roses #cfwarrior #cffittness #pooped #tired #worthit #feelstrong #canigetthroughthatdoor #fitness #fit #Gym #thegymeastbourne #fight #livelife #livelong


2

by @cfsussexdude

How many nebs could a cycstic neb, if a cycstic, could neb nebs??? Ha!
#cf #cfwarrior #cysticfibrosis #65roses #morning #nebs #donase #meds #bedhair #sorryboutthat #fit #fitness #gym #love #peace #✌️#ineb #day #workout #sponsorme


2

by @thevftos

This time last year I was extraordinarily ill. We flew out to Menorca and I felt like death... My chest was terribly wheezy and tight, nose was running but somehow blocked up, and my head was dizzy. It took quite a few days to start feeling better but it sucks when you go on holiday and suddenly CF makes a strong appearance. Bloomin typical..! 🙄

This year I’m super grateful that I feel better and can actually breathe properly and make the most of my holiday. Cystic Fibrosis doesn’t care if you’re on holiday or not, it’ll strike whenever...We just gotta make the most of the time when we do feel well...😎 I’ll start by having cocktails on the beach 😁🍹

Cala Galdana
3

by @holdontoyourkite_irl

📍 The Middle of NoAyr .
.
.
Feeling quite accomplished that I survived week 1 of 13 doing my regional work in hot ass Queensland.

I'll be spending the next 12 weeks in an airconditioned factory, wearing a hair net, plastic apron, plastic sleeves, ear plugs and wellies, standing in the same spot for 9 hours, not talking to anyone or listening to music (as Im not allowed to!😒☹), while I pick off the stems and rotten parts of capsicums, aka peppers 5 days a week. 🌶😅 .
.
Although this sounds like complete and utter hell, -which it is don't get me wrong!🤣, I haven't felt this happy in a few months. Bizarre? Yeah just a tad.. But there's nothing like some sunshine ☀️ and being back in the very best of company with our old roommates who are themselves a ray of sunshine 🌞☀️
.
.
Surround yourself with good people and good vibes, what more could you want 🤗💛🧡
.
.
.
.
#BeatingCF #CFWarrior #cysticfibrosis #cfawareness #65roses #queensland #ayr #mentalhealth #lifeunlimited #backpacking #farmlife #regionalwork

Ayr, Queensland
7

by @cait_rose65

This was from my last Boston trip! If you have followed my transplant story, you’ll know I go to Boston to meet with the lung transplant team because I was declining in lung function and wasn’t coming back up. Recently I hit 50% lung function after a year or two? I wanna say. That’s amazing I couldn’t be more thankful, so for anyone who wanted an update on that right now they have me on a pause pretty much because there are other people who are more sick then I who need to be evaluated before me. This is a great thing for me because the longer I can go without transplant the better kinda. It’s my own personal goal to go longer so please no one take that the wrong way. Although my thoughts are with all the patients who do need to be there and are waiting for their new lungs 💜 if something comes up again with the Boston team I’ll make sure to update you guys thank you for following me and my life with cystic fibrosis you guys are the bomb! #cysticfibrosisawareness #cfer #cfstrong #curecf #spoonie #cysticfibrosisfoundation #chronicillness #justbreathe #65roses #fundraising #cffoundation #lungfunction #lungs #hospital #transplant #lungtransplant #cysticfibrosiswarrior #port #iv #medication #cfirl #college #feedingtube #weightgain


0

by @saltycysters

@lido_house 🦈🛥⛓💙|| Spending the weekend in Newport Beach at the best hotel @lido_house ! It is literally so incredible! My family and I were spoiled at The Mayor’s Table by the most amazing chef 👨‍🍳 ever @riley.huddleston 👌🏻 Then went to the awesome and festive TopSide RoofTop bar! I’m living for these yellow chairs though 🙌🏼🙌🏼💛💛 If you are visiting Newport Beach, CA go stay and visit the Lido House! You won’t regret it! 🐙😍👏🏻

Have you been to Newport Beach??

❌⭕️❌⭕️ Tiff

Lido House Hotel
7

by @ameliagrace15

Today makes 1 month since my most recent hospital admission. I’ve been doing lots of cardio and even started some yoga. I’ve also been managing to get my 4,500 calories a day from mostly healthy calories. Cardio and Yoga are great for my lungs long term and I can already feel a significant difference. Though CF is chronic, I can still do the best I can to take care of myself and live a long and healthy life. This past month my biggest worries haven’t been health related, they’ve been stretching expenses and living pay check to pay check to pay bills. And as crazy as it sounds I’m so thankful for that. Instead of sitting in a hospital room or not feeling good I’m at there living a normalish young life and being broke. My hope is to stay out of the hospital for a long long time. I’m still not feeling great and I’m still having a major battle with fatigue but I’m making progress and for that I’m forever glad :) #cysticfibrosis #65roses #justbreathe


0

by @klynelsbury

Three years ago I was in the hospital room with 37% lung function wondering if this is the end… I was arguing with insurance companies over the cost of a drug that was thought to halt the progression of my disease, cystic fibrosis.

The day I got a national news I also got a short video message from @lancearmstrong , wishing me luck that I get the drug and go on to make something out of my life.

Well… I’m still here and this past week I was fortunate enough to speak at the exact same event he spoke at.

You never know the impact you’re going to make on somebody else’s life.

That two second video of @lancearmstrong giving me encouragement is partly why I’m able to share my message with the world and help the world today.

Your true character shows when you help somebody who has no ability to help you back.

Thank you, Lance

St. Louis
7

by @meleahjoy

Dr. Rose Kelly. She did my double lung transplant. What a wonderful person. I only saw her briefly before my surgery amd about a week after. So blessed!
#cf #cysticfibrosis #doublelungtransplant #65roses #surgeons #blessedlife


1

by @coffee.cats_

It’s that time of the year! FLUUUUU, POOOOO.
As a friendly reminder: My immune system is suppressed. A flu could kill me pretty easily. Please let me know if you’re sick and we’re expected to be near each other. This is for my safety!
Speaking of safety, you might see me religiously washing my hands and wearing my mask around for the next few months. Don’t be alarmed: I only look like a villain. The only dangerous things about me are my good looks and boyish charm 💁‍♂️


10

by @chronic_traveler

Mornings this last week have been really hard for me, ive been waking up feeling like my lungs are really heavey and my breath keeps catching, I am coughing for a good 5 minutes before getting out of bed. I know for most cystic fibrosis sufferers this is a normal feeling for them but for me its not. I dont get many chest symptoms unless im sick. Its also been a challenging week as work has been really busy. My job is a pretty active, I go up and down stairs alot and dont do much sitting around but when your struggling to walk from one end of the house to another I actually realise how active my job is. Hopefully with my daily morning regime for treatments i can get rid of this infection as quick as it came on. .
.
.
.
.
.
#cysticfibrosis #cfawareness #cysticfibrosisfighter #treatment #health #65roses #morningcartoons #chronictraveler #relax #chestinfection #physio #justbreathe #pyjams #riseandshine #justkeepswimming #gotodowhatyougottodo #daybyday


5

by @survivingcysticfibrosis

Hello all of Zachary's supporters we have had a difficult 3 days. On Wednesday afternoon Zachary could no longer breathe on his own , resulting in him needing to be placed on a ventilator. As it stands currently he is being placed on a temporary hold for transplant at U of M. However, he is still active on Pittsburghs transplant list. They have him sedated and resting comfortably. With the days being filled with highs and lows, we as a family are asking for your prayers and continued support.
Sincerely
Kayleen (sister)

#doublelungtransplant #cysticfibrosisfighter #livingmybestlife #cf #cysticfibrosisawareness #cysticfibrosis #65roses #CF #cfer #unos #lungs #donatelife #needlungs #survivingcysticfibrosis #upmc #pittsburgh


3

by @mutant_man_man_

When everyone at work starts coughing... On a serious note I it's cold season and so it's mask time baby! I used to be pretty self conscious about my mask and all the stares I get. I always have to remind myself nobodys opinion on me matters my health is what matters. A healthy me is a happy me 😁 #cysticfibrosis #cfawareness #65roses #vogmask #cf #dontgetmesick #sicko #fuckcf #coldseason


5

by @jass.jo_

Blossom || “When a flower does not bloom, you fix the environment in which it grows and not the flower” -Alexander Den Heijer


3

by @boomeresiasonfoundation

@youcannotfail and @rockcfem are playing catch up today, trying to fit in as many miles as possible. The heat has slowed them down, but they are determined to reach their goal of 500 miles by tomorrow!


2

by @65_roses_warrior

❗️Update Berlin ❗️
__________________________
Am Montag war ich erneut in Berlin in der Klinik. Ich muss bei jedem Besuch die Standard Untersuchungen 6-Minuten - Gehtest, Lungenfunktion, BGA, Echo Röntgen und Blutentnahme machen. Nach den Untersuchungen wird alles besprochen. Dieses Mal waren sie sich unschlüssig, ob die Pumpleistung meines Herzens voll funktioniert, oder ob sie nochmals ein Cardio MRT machen wollen. Das wird mit dem Oberarzt besprochen. Außerdem war dieses Mal der Punkt aktuelle Listung sehr entscheidend! Der Gehtest war 50 Meter besser, als beim letzten Mal, dafür war die Lungenfunktion etwas schlechter. Aber: sie wollen mich jetzt Listen.
Was heißt das für mich? Im Moment noch nicht so viel. Es wird besprochen. Wenn es dann soweit sein sollte, werde ich angerufen. Und ab diesem Anruf, muss ich 24 Stunden erreichbar sein! Ich werde aber mit einem niedrigen Score gelistet. Also sind noch viele über mir, die dringender eine Lunge benötigen..
Ich kann euch sagen, irgendwie war das Thema doch erst noch so weit entfernt und jetzt ist es auf einmal so zum Greifen nahe.. und ich bin ehrlich: ich habe Angst. Aber das ist denke ich völlig normal und verständlich. Denn es wird ja eine komplette Lebensverlängerung sein. Aber am Ende wird alles gut! 🍀💞
#mukoviszidose#cysticfibrosis#65roses#saltygirl#staystrong#nevergiveup#organdonor#organdonation#organspenderettetleben#organspende#neverstopfighting#berlin


2

by @justrunwithcf

Follow me and let us fighting together against Cystic Fibrosis 👊

This picture is from my last 6h-race

No human is limited (Eliud Kipchoge)
________________________________________________

#cf #mukoviszidose #breathe #cfboy #cfman #lovetobreathe #cfawareness #65roses #chronicillness #beatingcf #cfwarrior #illness #lungs #justbreathe #mukoman #mukoboy #saltysquad #cfer #cfstrong #lifeisgood #fitwithcf #blogger #munich #happy #superhero #runnersofinstagram


4

by @fibrocis.fc

A puberdade se desenvolve normalmente na FC?.
.
Geralmente há um atraso na puberdade em virtude do comprometimento ponderal e exacerbações da doença de base.
.
Texto por: Mariana Zorrón Mei Hsia Pu.
Médica – Endocrinologista pediátrica.
CRM: 125968.
.
#duvidasobreFC #fibrosecistica #setembroroxo #mesdaFC #cysticfibrosis #65roses #mylifewithCF


0

by @ashwoodadventures_

Because roses will forever means something different. #breathoflifegala #65roses #cfmama


0

by @lung_story_short

Quick drug 💊 run on my way to the mountains 🏔for the CFF 💙💛hike! It’s always important to get all the meds you need before the weekend, not all pharmacies are always open, especially specialty ones. Picked up my zenpep (enzymes) and then a new med to help with a transplant related issue. So thankful for insurance. These two meds combined cost is $20,175.28.... holy crap I know! 🙈🙀. Hope everyone has a fabulous weekend! .
.
.
.
#lungstoryshort #cysticfibrosis #cf #cfawareness #cysticfibrosisawareness #65roses #organdonation #posttransplantlife #transplant #doublelungtransplant #newlungs #drugs #prescriptions #meds #pills #walgreenspharmacy #specialtypharmacy

Walgreens
9

by @hillromcorp

We believe that better health can be achieved in many ways...including through song! Don’t miss the sINgSPIRE Night of Song Concert tonight at 7pm at the First Congregational Church, Sioux Falls, SD. sINgSPIRE, a program developed by Ashley Ballou-Bommena of Breathe Bravely, focuses on the art of singing as a way to combat the effects of CF. This fall, Hill-Rom is sponsoring a scholarship to sINgSPIRE to provide 14 students 10 weeks of free, private voice lessons with a qualified voice instructor. They'll work on strengthening participants' respiratory systems and improving their self-awareness and confidence. @breathe.bravely #singspire #health #breatheeasy #cysticfibrosis #cf #cysticfibrosisawareness #65roses #sixtyfiveroses #airwayclearance #hillrom


1

by @lungz.n.roses

Guys! There's ONE day left on this campaign! $25 per shirt in many sizes. Remember 100% of my proceeds go towards my lung transplant fund! The link is in my BIO!! #TransplantLife #GetZitaNewLungs #FuCF #CysticFibrosis #CFlife #Dreamers #DonateLife #Fundraising #CFwarrior #65roses #BreatheEasy


3