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#65roses

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Feelin’ so fresh & so clean!! The wound from my surgery on my hip is starting to heal up nicely and I got to take a fresh shower this afternoon!!
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Today I will have been in the hospital 24 out of the last 26 days. While I was originally expecting to only be in the hospital for 24 hours after my sinus surgery you have to always expect the unexpected when it comes to transplant life. The final decided discharge date is going to be Tuesday...just in time for Thanksgiving!! I will have finished a full course of two antibiotics & will only be going home on one IV antifungal that I will be on for at least 8 weeks. This will make my home regimen much easier.
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This year I have so much to be thankful for. My loving family who has supported me along this entire transplant journey, my friends who are always by my side, modern medicine & the advancements of new drugs, my doctors and the rest of the medical staff who cares for me at the hospital, my donor Samantha. The list of things I am thankful for could go on forever! Most of all I am just thankful to be alive & to be able to take a deep breath every day! There are always things in life to be thankful for! If you’re going through a rough time, take a moment to think of all of the positive things you have going for you at the moment. Don’t focus on the negatives or the tough things, focus on the good. No matter what, there are always things to smile about! You will find something to smile about!
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What are you thankful for this holiday season? What has made you smile in recent days?
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#pricelessbreaths #doublelungtransplant #lungtransplant #cysticfibrosis #cf #donatelife #recycleyourself #blog #65roses #givelife #cff #cfirl #transplantirl #cfwarrior #cflife #transplantlife #transplantwarrior #organdonation #chronicillness #invisibleillness #avascularnecrosis #kidneyfailure #spoonie #pimpinjoy #choosejoy

Giving myself a little R&R tonight with @inadayle face scrub while I battle an ear infection(??)! Can’t wait to get on some antibiotics tomorrow! • Has any other adults ever suffered a horrifically painful ear ache? Any natural remedies I can try! I’m all ears! (Pun intended) Advice appreciated! 👂🏻❤️ #fight2breathe #cysticfibrosis #65roses #curecf #cfawareness #unos #organdonation #donatelife #recycleyourself #doublelungtransplant #facescrub #restandrelaxation #allnaturaleverything

Got my bronchoscopy done this morning! Things look good inside👌🏽, they did a lavage which is a "wash" and then they took biopsies to check for rejection. I could feel them when they took the biopsies even though I'm sedated. Strange feeling. Won't get results from those till Thursday and then it can be a few weeks for anything else to pop up from what they collected from the lavage. Been sleeping/ recovering from the sedation for the rest of the day. 😴🌙✌🏼
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#lungstoryshort #cysticfibrosis #cfawareness #65roses #cfwarrior #posttransplant #doublelungtransplant #bronchoscopy

CLC MEMBER FEATURE: Hi, my name is Melissa! I’m 16 years old and live in British Columbia, Canada! It’s an honor to be able to share my story with such an amazing community! A little bit about me: I love to dance and I hope to be a makeup artist one day. Hanging out with my friends & family is very important to me considering time is so valuable. My biggest inspiration since I was 8 years old is Selena Gomez, who I was lucky got the chance to meet her for my wish!

I’ve had Cystic Fibrosis since I was born along CF related diabetes since I was 10 years old. CF is the most common fatal inherited genetic illness. Sadly there is no cure. CF affects many organs including the lungs, digestive system, pancreas, liver, etc. It is very hard for me to absorb fats & proteins so I have to eat more than anybody else. Which is one of the reasons I am 5'0 and tinier / shorter than anybody else my age. I often get teased for being so short but I don't mind being tiny at all!

This past year for me has been especially difficult!! Sadly my lungs haven't been as healthy as they usually are. In the past year I have spent a total of 11-12 weeks in the hospital because of different lung bacterias & my lung function dropping. I always try my best to keep myself as healthy as possible and out of the hospital by doing inhaled treatments 2-3 times a day which takes up some time!! Along with that i take 60-80 pills each day for all different things! In May 2012, I was diagnosed with CF related diabetes because there was too much mucus blocking my vessels so my pancreas had stopped producing insulin. It wasn't until February of 2016 when I became Insulin dependent. I check my sugars every 30-80 minutes and calculate the amount of insulin I need. It is very difficult to manage the two together and It has affected me more than i ever thought it would. Especially since when my sugar levels are high it enables bacteria to thrive, which then gets me very sick!

Overall I try my best to stay positive despite everything. I do often feel different than anybody else my age but I try to remember we were given these challenges for a reason. Keep spreading positivity & love♥︎♥︎ #chronicloveclub

Awww. That looks better! // Discharged as of yesterday. My short visit summary found some unsuspected findings. During my endoscopy for my stomach Botox injection ( I know, it sounds like a Dr. 90210 thing, but it's not👙👨🏼‍⚕️🌴It's all internal to keep the end of my stomach muscles continually opened and relaxed for food to flow fluidly into the remaining intestines.) But my point being, we all thought that the Botox was wearing off causing the return of my gastroparesis symptoms. It wasn't. So I was not experiencing gastroparesis, as previously diagnosed. What they found was fungus growth on my esophagus. My GI doctor assured me that two weeks of an oral anti-fungal would assuredly do the trick. //As far as severity and treatment, it is no more difficult or serious than a vaginal yeast infection. (TMI? Sorry folks, this is healthcare and medicine here 🤷🏻‍♀️And that was a G rated chat 😂)But because I am highly immune suppressed I can contract those things quite readily. The reality is viruses, fungi, and bacteria are everywhere. In short, I am talking about "bugs and germs" here 🐛🚖🤧📱🤢🚪🤦🏻‍♀️ Because of this reality, there was not any preventative measures that could have been done that I'm not already taking. So til then, Hakunah Matatah! #cysticfibrosis #cfawareness #curecf #lifewithcf #65roses #organdonation #doublelungtransplant #unos #recycleyourself #registerme #donatelife #deardonor #patientpride #sickisstrong #endoscopy #discharge #gastroparesis #botoxinjection #fungus #hospitalsweethospital #homesweethome

#FBF to one of my favorite nights of the year. This year the @cff_utahidaho will hold the 19th annual Taste of Utah presented by Zions Bank at the Grand America on Saturday, November 18, 2017.
It is seriously so amazing to see what started 19 years ago continue to grow into such a fabulous event. It is such an exciting time in the CF community, a cure is so close I can "taste" it!! 😂 That will never get old!! This night means so much to me and to be surrounded by over 900 beautiful, beyond generous, people that all want CF to stand for CURE FOUND is pretty overwhelming in the most wonderful way. It's so important to have events like this to keep the momentum of research going so we can find that sought after cure. I can't wait for tomorrow! Breathe out Love! Xo❤️
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#LoveToBreathe #TasteofUtah #cysticfibrosis #curecf #live #love #breathe #BreatheoutLoveXo❤️

Listening to Moana and getting to buckle the straps of your vest makes for one happy toddler. 🎥: @pepperestelle
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#cysticfibrosis #CFirl #CFawareness #LifeWithCF #CFLife #TakeThatCF #65roses

The reason we fight so hard to cure cystic fibrosis... Max picked up these and said “mine” he wasn’t upset but these are just SOME of his daily medicines in the fight to keep him healthy. It hurts me as a dad, NO TWO year old should have to know those are all his medicines. 😭😭 #fucf #cysticfibrosis #cf #65roses #cffighter #family #maxkingofthewildthings #wildthings #cystic

Today was shower day!!! It's amazing how the things we want can change so quickly. Just two weeks ago, all I wanted was to find the perfect apartment and this week all I want is the one day a week I can take my IV out to shower 🤗 #cysticfibrosis #65roses

MOST RECENT

As you grow older, you will discover that you have two hands, one for helping yourself, the other for helping others ❤️🙌🏼 || Wrapping up the week with a manicure! 💅🏼 Anyone else’s fingernails and toenails blue/purple from the lack of oxygen? • Clubbing in the fingers often occurs in heart and lung diseases that reduce the amount of oxygen in the blood. Clubbing is changes in the areas under and around the toenails and fingernails. The nail beds soften. The nails may seem to "float" instead of being firmly attached. The nails form a sharper angle with the cuticle. The last part of the finger may appear large or bulging. It may also be warm and red. The nail curves downward so it looks like the round part of an upside-down spoon. Clubbing can develop quickly, often within weeks. It also can go away quickly when its cause is treated. #fight2breathe #cysticfibrosis #65roses #curecf #cfawareness #unos #organdonation #donatelife #recycleyourself #doublelungtransplant #manicure #clubbing #clublife

Overwhelmingly thankful for Duke, all who have supported Eric's transplant fundraising, and health insurance.🙌 These photos offer a small glimpse into a single year of E's hospital bills. The 3rd total shows the cost of the actual transplant surgery: $986,341.41 - this doesn't include his hospital stay before & after transplant, additional surgeries, etc. This number represents the cost of the actual surgery & post-op room on Nov 20 (transplant day) only. As expected, the most expensive item was the organ procurement fee for the donor lungs.
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The fact that we don't have to spend hours agonizing over every item is an enormous blessing, a rare privilege most patients don't experience...and one that we haven't taken for granted. We've barely scratched the surface in looking at this huge stack (you know it's a lot when it costs $27 in postage to mail💸😲)...and I honestly don't know if we could've handled that added stress on top of everything else. Somehow, the required finances have fallen into place this past year, allowing us to focus on Eric's health instead of bills & paperwork - another unexpected miracle that sustained us when the weight of it all could easily have broken us.
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The circumstances of Eric's transplant were one in a million (due to his rapid decline & how quickly lungs became available for him)...and we were far from prepared for all of the change, upheaval, new responsibilities, and stress. Most transplant patients have months to years on the transplant list to fundraise; we had less than 24 hours between being listed and getting THE call (and not a moment too soon).
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We'll never be able to fully express our gratitude to everyone who has helped us along the way, especially our COTA for Eric volunteers & donors helping with transplant fundraising. (Many of whom we've never even met!) You all are real-life heroes, and we are honored and thankful that you gave touched our lives in such a meaningful way. Thank you, from the bottom of our hearts. 💜

This photo was taken a few years ago of me in the ICU fighting a CF exacerbation with a machine breathing for me. This is a reminder that everyday is a blessing and tomorrow is never promised to us; so live your life with appreciation for those around you and spread love and positivity.💜

Scoots could tell I was having a rough day so she curled up right next to me in her winter coat (haters gon hate... it’s cold AF in Minnesota) and held on to my arm 🐶 Just what I needed after a not so great time with one of the procedures they do for transplant evaluation called a right heart catheterization, which checks the blood flow and pressure in my heart ❤️ If you want to read an overly dramatic recap of my day/how I may or may not have puked on a resident in interventional radiology check the blog. Link in bio. 👊🏼💪🏼♻️ .
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#cysticfibrosis #cfawareness #cf #cff #silkyterrier #therapydog #65roses #lungtransplant #doublelungtransplant #recycleyourself #organdonation

É proibido desistir.
Respire fundo e continua! 🌬🍃🌹 #justbreathe #breathe #lung #65roses #cysticfibrosis #doublelungtransplant #live2breathe #livelife

A cutie even when doing his treatments. #tobi #tobipodhaler #cysticfibrosis #65roses #treatmenttime #jaxfinley

Sisters before Misters. What a way to start Thanksgiving break!!! Thanks @missouri_hoppe for being an amazing date. LT is gonna be interesting next semester. #deltaphiepsilon #dphieung #sistersbeforemisters #65roses #semiformal

We are back to chubby chasing those calories for Weston and his siblings are excited to join in on the fun!! Weston’s ice cream bowl is packed to the brim with lots and lots of extra 😋!! Overtime the pathways leading to and from Weston’s pancreas have clogged stopping the natural flow of enzymes used to break down and digest food. He takes pills (enzymes) that replace those natural enzymes however they don’t always break down his food accordingly limiting his food absorption. We once had Weston tested to see exactly how much food was being absorbed over a 3 day period. At that time he was absorbing 40-60% of everything he was eating. We have seen great changes in his health including food digestion since he’s been taking orkambi but with all the swimming, he’s burning through those calories like crazy. Let’s just pray that his mama doesn’t gain any of those lbs too!! Last time he was pushing these calories I gained 12 lbs!! 🤣🤣🤣🍕🤷‍♀️🤦🏼‍♀️ but hey... if he gains the weight... I’ll happily gain it with him!!
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#chubbychasing #eatupbuttercup #menchies #cysticfibrosis #cflife #65roses #cf #highcalorie #keepingitreal #raiseawareness

@cf_foundation @cff_northflorida COULD percussive acoustic therapy potentially become a worthwhile addition to a #CysticFibrosis patient's treatment regimen? Cause then I may be writing Santa for a @subpac this year! Let the record show I'm coining the term #PharmasonicTechnology right here and now

#awareness #65roses #justbreathe #futurism #innovation #science #sonic #sound #allaboutthatbass #wubwubwub

Awww. That looks better! // Discharged as of yesterday. My short visit summary found some unsuspected findings. During my endoscopy for my stomach Botox injection ( I know, it sounds like a Dr. 90210 thing, but it's not👙👨🏼‍⚕️🌴It's all internal to keep the end of my stomach muscles continually opened and relaxed for food to flow fluidly into the remaining intestines.) But my point being, we all thought that the Botox was wearing off causing the return of my gastroparesis symptoms. It wasn't. So I was not experiencing gastroparesis, as previously diagnosed. What they found was fungus growth on my esophagus. My GI doctor assured me that two weeks of an oral anti-fungal would assuredly do the trick. //As far as severity and treatment, it is no more difficult or serious than a vaginal yeast infection. (TMI? Sorry folks, this is healthcare and medicine here 🤷🏻‍♀️And that was a G rated chat 😂)But because I am highly immune suppressed I can contract those things quite readily. The reality is viruses, fungi, and bacteria are everywhere. In short, I am talking about "bugs and germs" here 🐛🚖🤧📱🤢🚪🤦🏻‍♀️ Because of this reality, there was not any preventative measures that could have been done that I'm not already taking. So til then, Hakunah Matatah! #cysticfibrosis #cfawareness #curecf #lifewithcf #65roses #organdonation #doublelungtransplant #unos #recycleyourself #registerme #donatelife #deardonor #patientpride #sickisstrong #endoscopy #discharge #gastroparesis #botoxinjection #fungus #hospitalsweethospital #homesweethome

Snuggle friends...she always knows how to show the love! #cflifestyle #curecf #cfawareness #65roses #snugglebuddy #puppylove #punkadoo #doglife🐾

Every week I’m going to post a throwback picture of myself and a story to go behind it about my life growing up with Cystic Fibrosis~

I was born In February of 1995. Unlike most Cfers i wasn’t diagnosed with Cystic Fibrosis until 6 years later. I was pretty much the perfect kid besides one hiccup, I literally lived in the bathroom as a child. At the time we didn’t know but CFers with my genetic mutation have a problem digesting food due to our pancreas being clogged with thick mucus. When food is not digested properly you can probably guess where you would be spending most of your time.
I was sent to so many doctors who could not find out what was wrong with me. At one point I was told I was lactose intolerant and I got to drink my very own special milk. I was hyped to be different but then that was debunked and I became special in a different way. At the age of 6 i was finally diagnosed with CF. So to make up for my lack of enzyme release I was given synthesized pancreatic enzymes that I have to take with every meal. Besides having a horrible stomach for a few years I would like to say I made multiple imaginary friends while spending countless hours on the toilet. #cysticfibrosis #cf #65roses #cfer #cfawarness #teamboomer #salty #cyster #youcannotfail #cflife #throwback #flashbackfriday #toilet #imaginaryfriends #kates_race_to_breathe

Viva Forever, I'll be waiting,
Everlasting, like the sun,
Live Forever, for the moment,
Ever searching for the one... #goodbye #myfriend #iwillalwaysrememberyou #sunson #hurting #65roses #vivaforever #behappy #прощайдруг #лети #будьсчастлив

Feelin’ so fresh & so clean!! The wound from my surgery on my hip is starting to heal up nicely and I got to take a fresh shower this afternoon!!
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Today I will have been in the hospital 24 out of the last 26 days. While I was originally expecting to only be in the hospital for 24 hours after my sinus surgery you have to always expect the unexpected when it comes to transplant life. The final decided discharge date is going to be Tuesday...just in time for Thanksgiving!! I will have finished a full course of two antibiotics & will only be going home on one IV antifungal that I will be on for at least 8 weeks. This will make my home regimen much easier.
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This year I have so much to be thankful for. My loving family who has supported me along this entire transplant journey, my friends who are always by my side, modern medicine & the advancements of new drugs, my doctors and the rest of the medical staff who cares for me at the hospital, my donor Samantha. The list of things I am thankful for could go on forever! Most of all I am just thankful to be alive & to be able to take a deep breath every day! There are always things in life to be thankful for! If you’re going through a rough time, take a moment to think of all of the positive things you have going for you at the moment. Don’t focus on the negatives or the tough things, focus on the good. No matter what, there are always things to smile about! You will find something to smile about!
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What are you thankful for this holiday season? What has made you smile in recent days?
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#pricelessbreaths #doublelungtransplant #lungtransplant #cysticfibrosis #cf #donatelife #recycleyourself #blog #65roses #givelife #cff #cfirl #transplantirl #cfwarrior #cflife #transplantlife #transplantwarrior #organdonation #chronicillness #invisibleillness #avascularnecrosis #kidneyfailure #spoonie #pimpinjoy #choosejoy

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