#65roses

Instagram photos and videos

#65roses#cysticfibrosis#cf#cfawareness#cysticfibrosisawareness#justbreathe#curecf#cfsucks#chronicillness#doublelungtransplant#cfwarrior#warrior#donatelife#love#mukoviszidose#organdonation#saltygirl#family#breathe#cflife#recycleyourself#lungtransplant#cysticfibrosisfighter#lungs#fucf#donor#deltaf508#transplant

Hashtags #65roses for Instagram

@Repost from @ms.s.assy - Celebrating 1 month post double lung transplant!!! Got called on 6/22/18. Spent 11 days in hospital. 5 days in ICU and 6 in the transplant unit at Stanford. When they biopsied my old lungs they found cancer. Dr said good news is cancers gone but if they'd had seen it I'd not gotten the transplant. All the gunk hid the cancer which could explain all the fevers I kept having and drop in lung function. It felt amazing walking from my room to outside to come home.
I Love my doctors. I've had great visits minus reaction to bone infusion. They said I couldn't have gotten a more perfect match and pristine lungs. So I'm hoping that's a good sign for my future. Now I have to still follow up with gynocolgist and I'm scheduled for a PET Scan the end of August. Also, I have to do a GI test which is next week.
I'm so grateful for my donor and donor family. I hope one day that I can meet the family and find out about my donor and live out their dream along with mine. So happy to breathe and be on this journey.
#igotnewlungs #June22 #takemeonthisjourney #donatelife #recycleyourself #faith #cysticfibrosisfighter #warrior #doublelungtransplant #cfawareness #65roses #happy1month #cflife #justbreathe #secondchanceatlife #gratefulformydonor #donor - #cancer#fuckcancer#survivor


0

Sequência de uma inalação hipertônica/salina.
Essa inalação foi desenvolvida a partir de um FC surfista, que percebeu uma grande melhora em sua funcionalidade pulmonar quando entrava em contato com a água do mar.
Ela é baseada na água do mar, contendo 7% de cloreto de sódio (No caso da minha), o que provoca a tosse, e ajuda na remoção do muco acumulado nos pulmões.
SIM ELA CANSA MUITO!!!
——————————————
#cysticfibrosis #cf #cfgirl #fibrosecistica #beadonor #donateorgans #donate #saltygirl #cfproblems #cureforcysticfibrosis #cure #cfcure #doe #avidacontinua #doeorgaos #65roses #fightlikeagirl #donatelife #cfawareness #fc #bebrave #vempulmãodaclara


1

Sequência de uma inalação hipertônica/salina.
Essa inalação foi desenvolvida a partir de um FC surfista, que percebeu uma grande melhora em sua funcionalidade pulmonar quando entrava em contato com a água do mar.
Ela é baseada na água do mar, contendo 7% de cloreto de sódio (No caso da minha), o que provoca a tosse, e ajuda na remoção do muco acumulado nos pulmões.
SIM ELA CANSA MUITO!!!
———————————————-
Mais posts como esse no meu Instagram sobre a Fibrose Cística: @cfgirl_life
#cysticfibrosis #cf #cfgirl #fibrosecistica #beadonor #donateorgans #donate #saltygirl #cfproblems #cureforcysticfibrosis #cure #cfcure #doe #avidacontinua #doeorgaos #65roses #fightlikeagirl #donatelife #cfawareness #fc #bebrave #vempulmãodaclara


2

I can’t believe it was only a year and a half ago I put it out there that I wanted to be a writer 📚
And now, My book is constantly helping others to live a more passion fueled life.
Every night before I go to bed, I think of three things I’m grateful for. I work to experience that memory completely. Where I was when I made the decision to change my life, the people who helped me along the way, and the millions of lives I have yet to transform.

Spend some time today and reflect on what you’re grateful for. Then watch the universe do it’s thing.
💕❤️💕


6

SÓ 15%??? Essa semana fiz a espirometria ou prova de função pulmonar; um exame que eu adorava fazer qnd mais nova, pois tinha que apagar as velinhas de aniversário pra saber a força pulmonar. Com 9 anos sobravam apenas 2 ou 3 velas acesas, e eu ficava p*#&@# da vida pq não tinha apagado todas, sem me importar cm o resultado do exame. Hoje, com quase 24 anos dps de muito tempo sem fazer, já não tem mais essa de 🕯️️… Mas sim o desejo de saber o resultado antes msm de sair da sala. Já sabia que ia ser uma 💣… Meu pulmão só tem 15% da sua capacidade de força.😓😓🙏🏻 Então.. agora é só esperar a reunião de junta médica e meu retorno dia 01/08 pra ver se já estou em lista pra transplante! 😊😉 ••De um modo muito simplificado, podemos dizer que Prova de função Pulmonar é um exame do sopro onde o seu principal objetivo é medir a quantidade e a velocidade com a qual determinado indivíduo consegue inalar (colocar para dentro) e exalar (colocar para fora) o ar.•• Se você ficou cm dúvidas sobre esse exame ou como funciona comenta aqui,pq daqui uns dias vou fazer um vídeo explicando mais um pouco dele 😊 •• Seja grato por respirar, seja grato pela vida! ❤️🙏🏻🌬️🍀•• #cysticfibrosis #65roses #fibrosecistica #1salva8


16

Sun kisses and our 'vogue' watch with @jessscarrow ☀️


2

Descansando con #ironman después de un largo día en #campingtoroazul
#donantesdegasnas #fibrosisquistica #cysticfibrosis #65roses


2

Yesterday was the CFF 💙💛stair climb in Denver at Mile High Stadium! It’s about 3,800 stairs.. I did not run them this year but maybe next year I’ll attempt to do so. I volunteered instead and helped direct the runners. Thank you to everyone who participated and helped raise money for the CFF, that money will help with research for new drugs and therapies that will eventually lead to a cure!! 🤞🏼💪🏼.
.
.
.
#lungstoryshort #cysticfibrosis #cfawareness #65roses #cf #cff #cffoundation #posttransplant #doublelungtransplant #vogmask #fucf #milehighstadium #stairclimb


11

Inhale...Exhale.
Everything is going to be okay.
Actually it's going to turn out better than okay, you'll see.
Type" yes" is you agree 😊
______________________
Inspire... Expire.
Tout ira bien.
En fait, ça ira encore mieux que bien, vous verrez.
Tapez "oui" si vous êtes d'accord😊 .
-
.
-
.
-
.
-
.
-
#mindbodyspirit #inspirationdaily #nontoxicskincare #holisticliving #diabetes #wellnessblogger #hippievibes #maladie #organiclifestyle #montreal #kidneyrecipient #invisibleillness #greenlifestyle #cancer #mtlblog #spoonie #wellnessjourney #medicalalert #jewelry #mindbodysoul #justbreathe #65roses #nontoxichome #organicbeauty #fitforme #bijoumedical #mtl #chronicillness #warrior #inspire


8

Eat what makes your soul and body simultaneously happy!
.
If ya only eat what makes your body happy (but you hate it) then you're probably not going to last very long with that lifestyle. And if you only eat what makes your soul happy (like 24/7 hotdogs) you're probably not going to last at life very long lol. Find your happy place with both!
.
I'm starting to find more and more foods that do just that and it's great. I love what I eat and I feel so much better on the majority of days.
.
One of my new favs is acai. And this place Bear's has it going on in the acai department! Yum!
.
My bowl has acai at the bottom, tons of strawberries, granola, blueberries, goji berries and chocolate chips. It was ah-mazing!

#acaibowls #acai #healthyeating #healthy #fitnessfuel #yum #cleaneating #healthylifestyle #delraybeach #florida #summer #positive #igfood #refuel #foodie #cf #cysticfibrosis #lungtransplant #transplant #65roses #chronicillness #southflorida #beach #beachvibes


1

Happy 12th Birthday to Cystic Fibrosis Warrior Emma. Please send birthday wishes this amazing girls way! Love n hugs beautiful and sweet Emma 💜
#cysticfibrosisawareness
#cysticfibrosis
#65roses
#breathe
#cfwarrior
#emmastrong


5

Home sweet home. Happy to wake up in our home this morning. Restarting the new lungs, new life journey with smoothies, coffee, and yoga.
Endless thanks to our community and Caleigh's donors.

Happy Sunday :) #CaleighSaysBryDo #lovelife #65roses #fight2breathe #donor #doublelungtransplant #UCLA #la #recycleyourself #breathershavebeenbrought


51

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, “I have lived through this horror. I can take the next thing that comes along.” You must do the thing you think you cannot do” - Eleanor Roosevelt || Home. Sweet. Home 🏡 • Happy to be in the comfort of our own bed, home, and suburban bubble today. Living in Los Angeles is so different than the hustle and bustle of San Francisco. (In fact I got so used to the “fast” city life I didn’t even realize how “fast” it was). We are truly blessed to be able to relocate to a place centered around my wellbeing, family, friends, and lifestyle! (We do miss every one of our Ohioans though 😘). #LosAngeles #California #fight2breathe #cysticfibrosis #65roses #curecf #cfawareness #unos #organdonation #donatelife #recycleyourself #doublelungtransplant #hubbyandwifey


54

Slow Sunday mornings


1

It's CF Clinic Day for this Jedi tomorrow. She's been put on the monthly plan until we can get her Ulcerative Colitis under control. Hopefully she's made some good progress this month.
#purpleforpaxton #cfwarrior #supertubie #ibdfighter #ibd #ulcerativecolitis #cfirl #cysticfibrosis #cysticfibrosisawareness #cfawareness #cfsucks #curecf #65roses #justbreathe #saltygirl #hollywoodstudios #disney #disneyside #jedi #rey #starwars #youngling #lightside #nevergrowup


5

Can’t get to the real beach? Not a problem! Welcome to DIY beach day! 😄 #sundayfunday #65roses #choosejoy #cfwarrior


0

Ehre wem Ehre gebührt.
Danke an die Veranstalter für dieses tolle Event und Danke an diejenigen, die mich/uns CFler mit diesen tollen Medikamenten ein Leben in dieser Form ermöglichen. Ohne diese legalen Hilfsmittelchen wäre ich definitiv nicht gestartet bzw. nicht in dieser geilen Zeit (2:22h für 22km und 800HM) durchs Ziel gelaufen.

Daaaaaaaanke..... 🔥🔥🔥😎😎😎 #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


2

Behind the scenes part 2
@sofiancy.boutique campaign
____________________
When women support each other, incredible things happen. Big thank you to this beautiful and independent lady for helping me with my campaign🤗
Wish I have that one million dollars smile 😁
Model @tainajecrois .
-
.
-
.
-
.
-
#made_in_mtl #model #urbanphotography #pretty #blackgirlsrock #montreal_gallery #fashion #montrealphoto #65roses #darkskin #photographer #canon #blackhair #photograph #naturalbeauty #makeup #chronicillness #selflove #melanin #medicalid #blackdress #jewelrycampaign #health #style #photo #Sofiancy #photoshoot #organdonation #beautiful #campaign


14

I was just unpacking from my trip back to my house after spending 3 months with my parents and thought you guys might like to see what all I tote with me from place to place to keep me alive after transplant.
.
This isn't excessive packing just because I was there for an extended time. I would need all these same medications and supplies if I was going somewhere for just one week, and all the same meds (but condensed) for an overnighter.
.
Ya know what the crazy part is though? This is a BREEZE compared to what I would have needed before my transplant.
.
I used to have to travel with EXTREMELY heavy equipment to do breathing treatments. I almost missed a plane once while I was wheezing and hobbling across Atlanta's airport trying to tote my "portable" Vest machine. And don't get me started on all the times I failed getting my equipment to work overseas with different electricity adaptors.
.
So, yes, this is a lot of stuff to travel with and deal with on a daily basis, but I'm actually thankful for how much easier it is.
.
Just to give you an idea of what all this is, I have a glucometer to test blood sugars, a portable PFT device to test my lung function, a pulse-ox to test my blood oxygen levels/pulse, a blood pressure cuff, a pill cutter, nose sprays, a weekly shot to raise my red blood count and then all the medications which cover everything under the sun and some other over-the-counter odds and ends.
.
Everyone is fighting their own battle and this is mine. Keep fighting on, yo!

#cf #cysticfibrosis #65roses #lungtransplant #transplant #kidneydisease #lungs #happylife #medications #donatelife #organdonation #life #chronicillness #stayinghealthy #justbreathe #warrior #CFwarrior #breathe #cfawareness


2

This Salty Skinned gal has a lot to be smiling about!🤗
.
.
First of all, the 'salty' reference is related to Cystic Fibrosis, not Bondi Beach.
.
.
People with C.F. have saltier skin than 'normal' people because C.F. effects the epithelial cells in the sweat glands. The salt we loose in our sweat is not reabsorbed with the water, causing us to taste saltier when our skin is kissed 😘
So yes, I saw this t-shirt and HAD to have it 😂👌🏼
.
.
Anyway, I'm so smiley as this week not only did my creon (artificial enzymes) arrive from Ireland 🇮🇪 to finally get rid of that nauseating feeling I've had ALL month!🤢👎🏼, but my lung function this week was a whopping 90%!! I haven't hit the 90 mark in at least 3 years, despite all of the training I did back home.
.
.
I'm so thrilled to have reached such a high number. Perhaps it's down to a combination of the new climate and sea air here in Bondi and being completely on top of taking all of my meds and getting plenty of sleep (as I am completely terrified of getting really sick out here!)😅
.
.
Whatever the explanation is, I'm extremely grateful and looking forward to pushing my lungs even further with my new Personal Trainer at @fitnessenhancement 💪
.
.
I hope you're smiling as much as I am this Sunday. Happy weekend all!😊💜
.
#BeatingCF #cysticfibrosis #saltyskin #bondibeach #cfawareness #65roses #bondi #australia #CFWarrior #lifeunlimited #pt #workout #personaltraining #beatcf #curecf #saltygirl #weekendvibes


19

All my life I never really knew anyone else with CF besides my sister. Now that I've been sharing her story on Instagram I've seen so many different people from different walks of life facing this disease, and fighting the same battles my family has faced everyday. It's heartbreaking & comforting at the same time. This devastating, yet unique bond. This illness sucks and every day I pray we are closer to a cure. Thank you for all the love and support. From my CF family to yours. #65roses #cf #cysticfibrosis #cysticfibrosisfighter #findacure #cfwarrior #boston #breath #lungs #lungtransplant #cysticfibrosisfoundation #cysticfibrosissucks


0

Trotz Beugeschutz für die Ellbogen hat es unser Schnappi geschafft sich heute Nacht zwei mal die Magensonde aus der Nase zu ziehen 😞 Beim zweiten Mal bekam er dann jetzt diese Armschienen, damit ist nun kaum noch Bewegung der Arme möglich. Es zerreißt mir das Herz wenn er sein Fäustchen ballt und den Daumen zum Mund führen will und es nicht geht, mit einem Schnuller weiß er aber leider nach wie vor nichts anzufangen 😢 vom Gesamtbild wirkt er auf mich zufriedener, ich denke die Schmerzmedikation macht nun langsam was sie soll. Heute Nacht hat er zwar noch ordentlich Galle erbrochen, aber laut Schwester normal. Der Bauch ist gigantisch, jetzt sollte langsam die Peristaltik des Darms anfangen, damit die Gase abtransportiert werden können. Die ganze Luft im Bauch drückt natürlich auch auf Magen und vor allem Lunge, weshalb er schon leichte Schnappatmung hat #cfsucks . Wir inhalieren viel, das mach es etwas leichter, leider tut ihm das abhusten des Schleims aber noch im Bauch zu weh. Alles in allem würde ich sagen es geht im Schneckentempo Berg auf 💪
#op #uniklinikhomburg #stomarückverlegung #kleinstergrössterkämpferderwelt #henriandthegang #loewenbaby_henri #januarbaby2018 #endlesslove #13012018 #endlichbistduda #liebeimbauch #liebeuntermeinemherzen #love #family #winterbaby #ganzgrosseliebe #madewithlove #love #family #mukoviszidose #cysticfibrosis #65roses #cystischefibrose #deltaf508 #genmutation #meinkleinerxman #kleinerkämpfer


9

Celebrating 1 month post double lung transplant!!! Got called on 6/22/18. Spent 11 days in hospital. 5 days in ICU and 6 in the transplant unit at Stanford. When they biopsied my old lungs they found cancer. Dr said good news is cancers gone but if they'd had seen it I'd not gotten the transplant. All the gunk hid the cancer which could explain all the fevers I kept having and drop in lung function. It felt amazing walking from my room to outside to come home.
I Love my doctors. I've had great visits minus reaction to bone infusion. They said I couldn't have gotten a more perfect match and pristine lungs. So I'm hoping that's a good sign for my future. Now I have to still follow up with gynocolgist and I'm scheduled for a PET Scan the end of August. Also, I have to do a GI test which is next week.
I'm so grateful for my donor and donor family. I hope one day that I can meet the family and find out about my donor and live out their dream along with mine. So happy to breathe and be on this journey.
#igotnewlungs #June22 #takemeonthisjourney #donatelife #recycleyourself #faith #cysticfibrosisfighter #warrior #doublelungtransplant #cfawareness #65roses #happy1month #cflife #justbreathe #secondchanceatlife #gratefulformydonor #donor


23

I have had a pretty slow month geocaching 🐌 but I wanted to change that this weekend! 😁🗺️ I had my eye on a @jacs_team geoart series of 65 caches shaped like a rose 🌹I got busy solving the puzzles 🤓 then jumped in the car for an early morning road trip! 🗺️🚗 I completed the art and ended on 101 caches for the day! ☀️ I also got my World Turtle souvenir, and qualified for a challenge! 😁🎉 #winning #happydays #missionaccomplished #65roses #cysticfibrosisawareness #cachingwithfriends #geocaching #eatsleepcacherepeat


4

3rd overall in today’s showjumping comp; 2 clear rounds, Then, In the 3rd & final round, all was going well until the very last jump..Tommy put on the brakes and I flew over the reins 😫 I dusted myself off, got him over the jump & fell off again 🙈
Still stoked to take home 3rd overall for the day 💖
.
.
.
.
.
#horselove #horsegirl #pony #ponygirl #equestrian #showjumping #showjumper #65roses #equestrian #equestrianrider #8yearsold #welshpony #dynamicduo #horseriding #horsesofinstagram


6

This isn’t the usual post I would put on this account. However, I’m extremely proud of the progress I’ve made since my recent pulled back & hyperextended elbow. Not only have I consistently been able to do many exercises I couldn’t do just 40 days ago because of pain, but I’ve surpassed my strength levels I was previously at before my injuries. I’m very excited to see all this hard work come to light during competition season. The main lesson I’ve learned this last month is that every stumble is only a set back. Take care of yourself and never stop pushing to be better than you were the day before. Have a fun and safe weekend everyone. If you wish to follow my fitness journey, be sure to follow @cystictofit


5

Portable treatments for the win! Thankful for friends that find treatment time more entertaining than a chore or inconvenience. #itsmyjetpack #treatmenttime #kickcf #cf #cysticfibrosis #65roses #cabin #monarch


1

Everyone's got problems, we're not individually unique in any way when it comes to dealing with the roller coaster of life. We all go through it. Some have money issues, some have shitty relationships, & some are bullied & go home crying after school. At its core, a problem is a problem. Some problems can be alleviated through a person recognizing their own bullshit & changing hard wired patterns to something that enriches their lives rather than destroy it. Some problems require you to pull out the proverbial scissor & cut ties with the things you thought you loved but aren't supporting your spirit any longer. Then there are the problems that choose you, ones you didn't cultivate by years of being a dumb kid & learning as you go. These problems latch onto you like a leech & suck the life out of you, or in my case along with thousands of others, take the air from your lungs

My problems aren't any better or any worse than yours, mine just require my attention a bit more. My problem is with me the moment I open my eyes, til the moment I lay to sleep & even then the bastard snuggles with me. Would I change this problem if I could? NO 🚫

I believe that resiliency is something that can't be bought or taught. You gotta walk through the fire & burn in order to callous yourself enough to stand tall & firm in handling this hereditary monster. What gets me out of bed every day is telling myself that nobody on this earth does more with less than I do. Whether that's true or not, it doesn't matter. I believe it, & it keeps me willing to fight. If 40% of my lungs work, you bet your ass I'm using that 40% to kill that devil on my shoulder in the gym, & try to inspire others that the fight is never over until you give in. I won't cry about that other 60%, or think "poor me". Poor me gets you nowhere. The time asking for pity over your problems could be used to be productive & give this disease a run for its money in the fight. I always bet on the underdog 💯 #cysticfibrosis #cfers #motivation #perspective #fitness #65roses #findacure #fuckcf #inspirational #keepfighting #cfawareness


0

4 years you been gone but I still think you princess. Everyday I look in the mirror I see this tattoo and it makes me think you and the moments shared. Smile down on everyone love you.
-V.M.B-

#cysticfibrosis #65roses #65rosesforcysticfibrosis


6

Our ability to handle life’s challenges is a measure of our strength of character. 🌹*||* The 14 day mark of being on #Symdeko is just around the corner and I am exhausted physically and mentally. Side effects are inevitable when starting a new antibiotic or medication but when your body is already damaged, scarred and giving 110% every day to just function adding new symptoms throws everything of balance. I’ve been experiencing some sinus congestion, headache but the most severe is the chest tightness, heaviness and overall feeling as if my lungs and rib cage are tightly bound and I am unable to loosen it. It gives me flashbacks to when I was on Orkambi and experienced the same symptoms except this time my lung function is lower and I am on supplemental oxygen. I’ve had to increase my flow of oxygen to 3.5 liters due to my o2 saturation dropping even. I find doing the simplest of tasks, like changing the sheets, to be arduous and sending me into such severe coughing fits I have to sit or bend over wherever I am. These coughing “fits” end up making me anxious because I can feel my o2 dropping and I am reminded of my panic attack I had back in February which led to my hospitalization and subsequent need to go on supplemental oxygen. After going online and reading others experience with Symdeko I realize I am not alone but seeing that for some they are only feeling a little relief after three months seems so daunting to me that I am unsure whether I am strong enough to withstand and X amount of days of feeling this way.... But in the end I’ve got Duffy snuggles so is life really so terrible? No, no not really. 😊#saltywomen #cfirl #cysticfibrosis #curecf #cfcommunity #cflife #cfawareness #cfaware #chronicillness #oxygentherapy #65roses #dumspirospero #goodvibesonly #couchcuddles #couchcity #duffydarlin


10

So this happened last night 😍😍😍 @kelseaballerini you’re so amazing and talented! Thanks for coming to my side of the stage and hold my hand and sing!!! It was so awesome and made my night 💜💜💜💜




#TiffGotLungs #lungs4tiff #cysticfibrosis #cfawareness #curecf #doublelungtransplant #cfirl #saltycysters #fibro #love #laugh #hope #donatelife #organdonation #dream #donor #65roses #recycleyourself #taylorswift #thankful #justbreathe #spoonie #chronicloveclub #Kelseaballerini #graffitiUTour


10

When chess calms him down so he can get through his physio 🙏😍
#teamchriso4CF #chesslover #physio #pep #cureCF #paingoaway #chessaddict #borntofight #65roses #invisabledisease


4

Her, Milah Sullivan

You wouldn’t know it but this little sassy, intelligent, full of life, bubbly shining star suffers from CF.

Now to be completely honest I had not a single clue about CF until a very special friend of mine @2ladies_andalittle_gent (who’s strength I am in total ore of) daughter Milah was diagnosed.
She has educated me on CF and I am in totally shock by the statistics, how little is known about CF and realities that come with parenting a child who suffers from it.
In saying that my dear friend you are doing an incredible job, your a mum to 3 kids, a shift working husband and yet you still keep your shit together on the daily. You are amazing!


2

I didn’t ask for this kind of life. It’s hard. It’s messy. It’s complicated. I get knocked down a lot. I’m on my way to getting back up though. To those of you here to support me, thank you! Those who are waiting for me to fail, you’re going to have to keep waiting. 💪🏻#cf #cysticfibrosis #65roses #warrior


14

✨✨✨✨


1

That moment @therealmurr falls in love w Chanel during #comicon in #sandiego before his #impracticaljokers block party 🎉
#pomeranian #puppy


9

65 Roses Hibiscus Blonde Ale! Made it before the batch was truly kicked. Great taste and specially made for the Brewer’s Ball in Charlottesville to support @cf_foundation #65roses #cf #craftbeer


3

You're a peach!
.
I love goofy road side attractions. Welcome to Peach World in Georgia!
.
They had all kinda goodies like peach jam, toe jam, frog jam, peach slushies, alligator heads, pies and souvenirs. You know, the usual.
.
5/7 would recommend
.
In other news, getting closer to home!
.
#peaches #georgia #roatrip #jams #alligators #summer #tourists #touristtrap #cysticfibrosis #cf #65roses #lungtransplant #georgiapeach #transplant #fruits #fun #giggles #saturday #weekendmood


0

‚Gib niemals auf! Niemals! Auch wenn das Leben dich manchmal in die Knie oder gar auf den Boden zwingt. Wenn du denkst es geht nicht schlimmer und es doch noch schlimmer kommt. Dich zusätzlich auf einmal aus dem nichts alles überkommt, sei stark! Du schaffst das! Du darfst weinen, du darfst schreien, aber du darfst niemals aufgeben! Niemals! Du schaffst das! Du bist ein Kämpfer! Und das Leben ist schön! 🙏🏼💞‘ _________________________________
Heute war es etwas ruhiger hier, nachdem gestern echt anstrengend war. Ich hatte richtig dolle Angst vor dem Rechtsherzkatheter. Da ich vor ein paar Jahren ein nicht so schönes Erlebnis hatte. Also haben sie mir Medikamente zum entspannen gegeben. Als ich dann angerufen wurde, musste ich noch 2,5 Stunden vor dem OP- Saal warten und habe alles mögliche mitbekommen. Unter anderem, dass im Saal neben an Hilfe benötigt wurde und sämtliche Ärzte und Schwestern hektisch umher gerannt sind. Das hat meine Aufregung nicht besser gemacht und so sind dann auch ein paar Tränchen gekullert. In dem Saal würde ich dann komplett steril abgedeckt und nur die Leiste war offen gelegt. Ich muss euch sagen, als sie alles so vorbereitet haben und ich da lag, ist mir das Herz noch weiter in die Hose gerutscht. Aber die Schwestern und der Arzt waren so unfassbar lieb und haben mich so beruhigt. Es war dann auch echt überhaupt nicht schlimm! Wirklich! Das einzig unangenehme war der Druckverband für acht Stunden danach. Vier Stunden konnte ich schlafen, danach hatte ich schmerzen, da es so eng war. Und da war dann auch ein Moment in dem einfach alles hoch kam. So weit weg von zu Hause, der Schmerz und die neue Umgebung. Aber es waren alle so für mich da! Bis spät in die Nacht habe ich telefoniert und ihr habt mir alle so liebe Nachrichten geschrieben! Ihr seid der Wahnsinn! Danke, danke, danke! 🙏🏼❤️ Heute habe ich dann ganz lange geschlafen und mich einfach nur ausgeruht! Zwischendurch habe ich noch mit meinem Freund und später noch mit einer Freundin telefoniert und so ging die Zeit auch um! ☺️
Gib niemals auf! ❤️
#mukoviszidose#cysticfibrosis#65roses#saltygirl#staystrong#nevergiveup#fighter#warrior#girl#berlin#hospital#hospitallife


6

A beautiful venue @prime_saratoganational for an amazing event @cf_foundation
#65Roses #print #copy #cookies


0

Hello people. I have not been posting at all on Instagram. I'm apologize if I left you in the dark during my journeywith CF. lately I've been busy with enjoying my summer. ❗️I have a question! I have a port-a-Cath in the middle of my chest and I went to KingsDominion and rode every ride. After wards I felt so much pain near my port and heart. Does anyone know why or what the reasoning of it was?❗️Anyways, I've been transferred to a new hospital this summer. My PFTs were only 3% lower than when I was admitted into the hospital at my previous hospital. For me being an out patient and only loosing so little percentage on PFTs, is amazing! I feel great and my lungs are doing well. I'll try to post more sorry ❤️ #cf #Cysticfibrosis #cysticfibrosis #65roses #cysticfibrosisawareness


0

They just left early this morning, and I’m already missing them!! 9 days around Italy with my family was quite special.
It seems a bit surreal that we just toured around Rome, Venice, Florence, Pisa, Naples, and Capri. My family is my everything, and this was an adventure we will never forget.
Thanks again life, you know I love you. Keep Smiling!


1

Pop quiz! 🙋
The first transplant surgery was in 1869. What was transplanted?
Don't cheat 😅
_________________
Pop quiz! 🙋
La première opération de greffe a eu lieu en 1869. Qu'est-ce qui a été transplanté?
Ne triche pas 😅 .
-
.
-
.
-
.
-
.
-
#liver #chronicillness #montreal #Hypoglycemia #newlungs #ImplantedDevices #allergies #spoonie #organdonation #lungstoryshort #prednisone #posttransplant #cancer #maladieautoimmune #pkdfoundation #illness #invisibleillnessawareness #BloodThinners #organfailure #HeartDisease #diabetes #type2diabetes #survivor #medical #kidneyrecipient #francais #lupus #quebecois #mtlblog #doctor


29

Cannot believe its been 12mths since you have been gone. The only solace is you have no more pain. Your Dad and I love and miss you. 💜💜💜 You bravely fought the CF battle for 17yrs. You now have your angel wings our precious girl and can breathe freely as you soar. You will be missed more than you will ever know. RIP (Aunty) Maddy 💜💜💜
#cfsucks #cffight #gonetosoon #tillweseeyouagain #cfbattle #cfawareness #inmemory #cfsucks #cysticfibrosisawareness #65rosesforcysticfibrosis #sixtyfiveroses #65roses #sixtyfiveapparel #iwearpurpleforcf #17istoyoungtodie #wemissyou #iwearpurpleformydaughter #breathing #breatheasy #angel #angelwingstosoon #ihatecf #cysticfibrosissucks #inmemoryofyou #65roses🌹 #65rosesawareness


0

Bollywood-themed 17th Annual 65 Roses Gala benefiting Cystic Fibrosis Canada!
_________________
Photography: Janga Makes Photograpy
Décor Creative Director / Concept & Design: @kavitamohanevents
Décor / Concept & Design: @luxaffairs
Artwork & Logo Design: @kimbo_design
Chiavari Chairs: @vancouverchiavarichairs
Florals: Urban Fare
Stationary: @makingmemories.stationery
_________________
#cysticfibrosis #curecysticfibrosis #Vancouver #britishcolumbia #vancity #vancouverbc #65roses #gala #fundraiser #charity #support #event #change #cure #cf #decor #decorations #florals #flowers #centrepieces #stationery


0

No better way to fish than on an @edgewaterboats! #BreatheEasy is all geared up and ready to go #fishing #65ROSES


2

Come out today! He’s the reason, I’m out here raising money for Cystic Fibrosis! In a few days, would be his birthday. Donate at: https://m.facebook.com/cysticfibrosisfoundation/ #cysticfibrosis #riseandshinewithgretchen #65roses #justbreathe


0

Day 15. I love the beautiful architecture and history of this place #JohnsHopkins #hospital #Baltimore #CF #CysticFibrosis #65roses #CFsucks


0

Breakfast & The Paper! #oldman #cfwarrior #cysticfibrosis #rwj #cflife #65roses


2

So proud to be a part of this event! My brother had Cystic Fibrosis & lived a life full of love & laughter! We need your help so others have this chance!💜 #cysticfibrosis #riseandshinewithgretchen #justbreathe #65roses


0

Auch wenn das Ziel weit entfernt ist, der Weg lohnt sich immer ♥️ Uns geht es „gut“! Der kleine hat nun mehrfach Schmerz- und auch Beruhigungs- und Schlafmittel bekommen. Damit er zur Ruhe kommen kann. Der Bauch ist mächtig groß und auch hart, aber laut Ärzten normal. Wichtig ist nur dass die Blutung aufgehört hat. Durch das „arbeiten“ am Darm war der Darm sehr angeschwollen an der Verbindungsstelle, so dass das Blut von der OP eben nicht nach unten sondern zurück in den Magen transportiert wurde, und als der voll war liefs über. Hätte die Blutung nicht aufgehört hätten sie vermutet dass innen was aufgegangen ist und sie hätten ihn wieder geöffnet 🙏 momentan ist alles stabil, wir hoffen das beste!
#kleinstergrössterkämpferderwelt #op #stomarückverlegung #henriandthegang #loewenbaby_henri #januarbaby2018 #endlesslove #13012018 #endlichbistduda #liebeimbauch #liebeuntermeinemherzen #love #family #winterbaby #ganzgrosseliebe #madewithlove #love #family #mukoviszidose #cysticfibrosis #65roses #cystischefibrose #deltaf508 #genmutation #meinkleinerxman #kleinerkämpfer


14

Do you have a little one who loves American Girl dolls? Check out this one of a kind custom handmade "65 Roses" dress available in our silent auction at Pipeline to a Cure this year! More silent auction item details to come soon!
ncpipelinetoacure.eventscff.org #pipelinetoacure #65roses #wilmingtonnc


0

Happy Birthday Mom!!! 🌹💋❤️ 65 Years and not a bit quiet... #loveyou #birthdaytime #motheroftheyear #65roses #flowers


0

#65roses 🌹🌹🌹 ~my rose~ #edit


1

Well after a few very healthy weeks (despite rib joint pain), I have developed another small hurdle to get over...Shingles 😩.
.
My GP suspected it yesterday because I had sensitive/sore skin on my hip, but couldn’t confirm it at that time because I had not developed rash.
.
I woke up this morning and have developed a small rash on my back, so after many phone calls to the transplant doctor on call and a pointless visit to a GP (who pretty much sent me away and told me he couldn’t prescribe what my doctor told me I needed).
.
I have now taken my first dose of antiviral medication and will have some bloods tests tomorrow, thankfully the pain isn’t overbearing at this stage, but more a constant ache and only sore when my shirt brushes against that area of skin.
.
Let’s see what the next couple of days/weeks holds for me now 🤷🏼‍♀️😂.
.
#cysticfibrosis #doublelungtransplant #mydonormyhero #65roses #shingles #immunosuppressed


0

Matt had PFT’s Wednesday and it was decided that he would go home on day 10 instead of doing a full 2 week clean out. Not necessarily because his numbers improved all that much (they really didn’t), but because he didn’t feel that extra time would do much in the long run. So now he’s sitting at 64% lung function in the comfort of our home instead of a freezing cold hospital room. Does anyone else keep their room like an icebox when they’re admitted? •



#cfsis4acure #cysticfibrosis #cysticfibrosisfoundation #cf #cfsucks #justbreathe #breatheeasy #teenadvocate #cfadvocacy #disease #curecf #cysticfibrosisstrong #deltaf508 #cfsis #OHSU #doernbecher #adultside #healthcare #cleanout #admission #hospital #65roses #weneedacure #support #supportsystem #advocacy #getinvolved #legacysalmoncreek #legacy #cfawareness #cfadvocacy


19

🚨link in bio..donate today🚨
So after a few issues with bike sizing etc I am finally up and running!! Today was just a quick 10km to get use to my riding shoes and peddles and a few other little things. I am proud to say that I had my first crash as a result of them 🤣 I thought I’d spend some time practicing un clipping and stopping and after a few successful attempts I thought it would be fun to shift all my weight to the side that was still clipped in...thankfully the road caught me 😅
So it was ‘back on my bike’ nursing a sore wrist and a few cuts and grazes 🤙🏻 #cycle4ed


2

My new sea life medical alert bracelet! Absolutely love it!! So happy I got it much earlier than expected! There’s nothing wrong with my other bracelet, I just saw this one and obviously I needed it ha. It’s nice the actual ID is interchangeable so I can have more than one bracelet and don’t need to continue to add on the cost of the ID. #medicalalertbracelet #chronicallyfabulous #medicallyfashionable #diabetes #t1d #65roses #cfmermaid #mermaidlife


2

You ever #really #laugh so hard it brings you to tears #😂 .... #YES I am #lucky enough to have those people that make me laugh so hard... I cry... then I have a coughing fit... then I throw up 🤮 ... and... THEN.... #He says people pay good #money to laugh that hard.... #Me : .... #FuckYou and #FuckCF .... #CysticFibrosisFoundation #65roses #BreatheEasy #JustBreathe literally or just try really hard to #breathe


4

“Float like a butterfly, sting like a 🐝 Bee.” #MuhammedAli Y’all see this footwork!? My baby is doin it already! Loves being in the gym, and loves the art of fighting. & he’s such a natural 😎👊🏽 @Floyd mayweather WHO!? .
.
.
.
#CF #cysticfibrosis #cysticfibrosiscankissourass #boxing #mma #title #bjj #jujitsu #fight #fighter #SmallFighter #snallfighterssquad #salty #65roses #chronicillness #lungs #love #family #training #muaythai #gym #health #fitness


4

Reality of a Cystic Fibrosis patient.... I am NEVER late places... Today we should have left for CF clinic 20 minutes ago to get there on time.... Of course at the worst time ever *always* Ava has a HORRIBLE tummy ache and I will stop there...
She is getting to that age where she finally isn't screaming bloody murder because of the pain and she just whines and asks me to stay near her.
She is sad that she is taking so long that we're running behind.
These are the times where I wish I could take her pain away. #cysticfibrosis #cf #cfsucks #fucf #cffighter #cfwarrior #cfprincess #65roses #cfsisters #stomachache #always #bloated #distendedbelly #cfbelly #cfclinic #poop #treatments #enzymes #zenpep #probiotics


3