Getting her daily outfits get hard with a wild 19 month old! #cysticfibrosis
1 0
Playing outside 🤗 • • • Today has been veeeeeery difficult. I woke up more tired than I’ve been in weeks...which is saying quite a lot. My body just couldn’t really function today...and this was after sleeping for 11 hours last night 😓 I’ve been resting a lot more recently per my body’s fatigue and pain both are off the charts, and I haven’t felt like doing much of anything. I was in a pretty bad mood the first half of the day (combo of feeling horrible + being exhausted...not a good combo 😭), but dad suggested we try to get out of the house for a little while, which I was at first reluctant to do, but eventually agreed. We took a trip into town and had a wonderful time—it was a beautiful day today and I’m so glad I got to enjoy the weather with my favorite guy 💜🙏🏻 • • • I’ve found there’s only two things I can do to get myself out of a mood rut: 1) get IN my Word and 2) get OUT of the house. I may not be able to change the way I feel physically, but I can change the way I think about my physical situation: BY CHOOSING NOT TO. I choose to keep my eyes on Jesus, and off myself. Because my situation is depressing...and when I think about it even for a little while I fall into a pit of self pity and have a hard time getting back out. So I don’t think about me. I think about HIM, and how He’s bringing GOOD out of all this...somehow and someway on His perfect timing. • • • Don’t think about it. It’s not denial. It’s not ignorance. It’s faith. It’s hope. It’s trust. It’s the way we’re called to live. • • • “Looking into Jesus, the author and perfected of our faith. For the joy set before Him, He endures the cross, scorning it’s shame, and sat down at the right hand of the throne of God.” —Hebrews 12:2 #looktoHim 👆🏻🙏🏻
8 1
I love rowing! I manage at least 26km per month since last August! #strongaf #rowing #cysticfibrosis #crossfit #beastmode #brokenlungs #rowingacrosscanada
7 0
Grief and anger rear their heads often and unexpectedly in this disease. Maybe I’m just trying to find someone to blame. Hindsight is 20/20. And maybe it’s ok that this is the process as long as you know what it is and let it play itself out without putting too much weight on it. I’m still forever grateful to his doctors, even if there were things I wish they had told me, things I wish I didn’t have to learn on my own. One single thing I would change is that every center needs to have a lactation consultant on staff for the infants. But I know now what needs to be done for him, and I’m at peace with it, and myself, for now. CF moms, G-tube moms, you are a strong bunch of women. #cysticfibrosis #cysticfibrosisbaby #gtube
5 0
✖️CF AWARENESS VIDEO POST✖️ Here it is! My CF Appointment. .Remember to keep swipping! Just keep swipping! I go into clinic every three months for a check up to monitor existing infections and to make sure the CF has not progressed in a (for lack of a better term) bad way. . PULMONARY TESTING So the plastic thing in my mouth is an test the measures the amount of air the lungs can hold while also accounting for the speed at which the air is pushed out when we blow. (Please note how difficult it is for me to NOT make a dick joke here) . FEV or Forced Percentual Expiratory Volume Is what the percentage is called. Yesterday my FEV was 103% Average FEV for people without CF is with in 80%-100% So I’m doing alright.💪🏾 . DIET As a CF patient I have a very high fat diet I was told by a doctor once I could eat McDonalds everyday and not get fat. An exageration but pretty much true. I can eat whatever I want and maintain my small frame. But if we don’t carry a certain amount of weight our lungs could go into decline. . As always let me know your thoughts/questions! . LINK in BIO to support CF research! . I’m going to be posting more now that the month is almost over. . THANK YOU Claire Keating & Kimberly Altman @kimberlyaltman . _____________________________________________ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . #cysticfibrosis #deltaF508 #CF #cysticfibrosisfoundation #sixtyfiveroses #chroniccondition #chronicillness #chronicdisease #chroniclungcondition #nebulizer #asthma #disease #health #fitness #abs #workout #model #beauty #selflove #selfie #film #avengers #livelaughlove #badass #edgy #nyc #newyork #losangeles #strength #inspiration @cf_foundation @americandisabilityassociation @boomeresiasonfoundation @cff_gnyc @cff_oregon @cff_oc @cff_maryland @cffsandiego @cff_heartofamerica @kaitlinolson @sixtyfiveapparel @celinedion
12 2
💜💜💜💜💜💜💜💜💜 @mendo_barbie One of Connors breathing treatments is Hypertonic Saline 7% which is basically sterile salt water. When he is sick he takes this medicine up to 4 times a day with his vest to assist with CF airway hydration, mucus mobilization and a more productive beneficial cough. Research has shown that patients with #CysticFibrosis experience fewer pulmonary exacerbation since this medication has been added to the daily regime of health maintenance via evidence based studies. And what most don’t know is this medication is available to everyone - it is found naturally at the beach. Not only is the ocean good for your lungs- it also helps put a little more ‘pep’ in your step. The mood-boosting endorphins you get from paddling your board and the oxytocin you experience from catching your wave to hanging out with your friends afterwards is a natural antidepressant and anti anxiety. Thank you #MauliOlaFoundation for their annual surf experience days at #SantaCruz so Connor- and those affected by CF can enjoy the powers of the ocean. It’s not just a breathe of fresh air .. it’s a breath of life 🙌 #MayTheWaveHealUsAll
73 1
Before and after: an #Orkambi story 📖 @chelseacgagnon ** These pictures were taken exactly 2 years apart📷 ** The ones where I weigh about 100 pounds are 1 whole year before I started Orkambi. I remember I had left a hospital admission a week or so beforehand, unsure whether I would be able to run the half-marathon I had signed up for - thankfully I finished. ** But this was my life: skinny because I was always, constantly sick. I never got a break. I lived from physio treatment to physio treatment, and from admission to admission. ** Today: 10 months on Orkambi. Working (part-time) again. Able to gain both lean muscle and fat. Able to stay up past 9 pm. Able to go out with friends. Able to plan for the future. ** YES THAT IS THE EXACT SAME SHIRT! ** #thanksorkambi ** If you want to help others access this LIFE CHANGING medication, please head to: & same link in bio
17 3
31 Days of Cystic Fibrosis. May 26 Survival is a team effort My decision to stay at home did not mean I was the sole person responsible for my health. I was surrounded by a team of people that were working together to keep me alive. On a practical level, Mum was chauffeuring me to multiple appointments each week. Grant was preparing food, in charge of the hygiene requirements to keep my various medical equipment sterile, and in the last few weeks he took on the task of sorting out my IV medications and pre-preparing them for me. (All the while, both of them still had to attend their day jobs.) Dale, my homecare worker from CFWA, came twice a week to take care of light housework and assist with physio treatments. John, my homecare nurse from CFWA, came once a week to change the dressing on my port. Physio staff from both hospitals compiled exercise and muscle strengthening programs for me - which I refer to as “pilates in bed”. In addition, Jamie did my lung function at clinic until it dropped that low that measurement pointless. (My last official measurement indicated that only 10% of my lungs were working.) Also at clinic, Paul the dietician kept an eye on my calorie intake and weight loss while Dr Joey kept an eye on my blood sugar levels. Sue, or Aunty Sue as she is affectionately known, our Clinical Nurse Specialist, looked after my various scripts (including getting them filled) along with arranging my weekly tub of supplies full of syringes, saline, alcohol wipes etc and had them ready so that each Monday Mum could exchange an empty tub for a fresh one. Sue would also take blood from my port, and collect sputum samples to save me the walk to Path West. (Sue is an incredible woman and has an uncanny ability to read her patients. The less attention she pays to you the better, when she starts doing all of your fetching and carrying you know things are getting serious!) Uncle Gerry saw me in clinic once a week and would then liaise with Dr Mike to keep Royal Perth updated with my status (important for your ranking on the transplant list.) #cysticfibrosis #31daysofcysticfibrosis
8 2