my new life expectancy (health update)

[@StephiLee]

some things i forgot to say in this video: i was also fighting a lung infection called m abscessus for many years before i started trikafta. m abscessus is a bacteria that is nearly impossible to treat with antibiotics. it would cause my lungs to bleed and my doctor and i were talking about a 12 month course of IV antibiotics to try to treat it, even though there was a good chance the IV antibiotics wouldn’t eliminate it. basically it was an infection that would probably be what ended up killing me. after a month of trikafta, i’m so happy to say the m abscessus is completely gone!! the other thing i wanted to mention is how much better my sleep has gotten. when my lungs were at their worst, i would go to bed at night SO congested. many times i would stop breathing in my sleep and jolt awake gasping for air. i would be afraid to sleep sometimes because i thought i was going to suffocate in my sleep one night and never wake up. this is something i haven’t experienced again at all in the last 6 months, which is also amazing!!

[@mariorioz6710]

You're beautiful

[@Emmerz127]

That’s so amazing! I’m so, so happy that you don’t have to live in fear of dying anymore! I hope things remain on this course and you can stay at 75% lung function for the rest of your life!

[@PeterPauls]

Good to see you that you are so healthy, bacteria off, lung capacity on. I love to rewatch your travel videos, when I found your channel I went through all of the videos, now I repeat. :D You were always beutiful girl, it doesn't changed, you are just healthier. :) But KEEP UP forever! Anyway OFF topic: I was always curious, that if I would go to a doctor to check my lung functions with healthy lungs (as I know), but I literally have no kidneys and I have mild heart disease, so I'm not an athlete. :D I would get 100%? Because if your lung functions are 75% it sounds so damn good, like when before my kidneys failed, I had only around 5% of kidney functions. For example when I was born, I had 50-55% of kidney functions and I lived my life without feeling that I have any problems, I just had to go to the doctor once or twice in a year, I reached 5 % when I was 14. Sorry off topic over.

[@SirManfly]

@@PeterPauls yes! as a casual watcher who doesn't comment much here, it's really great to hear this progress of yours and i hope it gives others with CF some hope as well !! you deserve to have a long life too like most people expect !! hugs!

[@elishaleigh1]

I am so happy to hear this awesome new! I am so happy for you!!!!!

[@grissycrops3863]

Never heard you making so long sentences. You're talking like a river now. Wow. A pleasure to witness. Thank you

[@StephiLee]

hehe i love air

[@user-bj2lu9qt3o]

Yes, we're seeing more of her "real" character now. 😊

[@gordieevans2263]

Stephi Lee as you should!

[@cheri6360]

Stephi Lee isn’t it wonderful! So happy for you.

[@101sanford]

@@StephiLee can we be friends

[@danithefiend6167]

Im so happy for you. I wish this drug was around when Claire was still alive. Modern medicine is amazing.

[@wutever1683]

was just about to say this:( I miss her so much but im glad that this is around now

[@EmoRiverGirl]

Yesss. I miss Claire deeply. But Stephy keeps her light alive imo. She is so inspirational through all the issues brought forth. We can’t diminish her life in lieu of other. Claire would not want that. And we al know that. Thank you stephy, for allowing us to join you on your journey.

[@hollyamberblue]

RIP Clair❤️

[@savannahm5529]

It was in clinical trials.

[@savannahm5529]

My cousin took part in it.

[@sledneck7398]

Well at least I didn't cry this time... This is certainly the best story of 2020!

[@1956eggman]

i did

[@simoncarter5951]

There hasn’t been any good stories of 2020 so that wouldn’t be hard.

[@hamoodi_sk8271]

I did when she mentioned her mom😭😔

[@knottymom88]

I cried HAPPY TEARS! YAY... NOTHIN BUT LOVE Stephi!

[@summerangelmartinez5344]

I tried not to tear up but then she mentioned her mom 😭😭😭😭😭😭😭

[@BronzDano]

Man, it really slaps me in the face with how unproductive and lazy I am, wasting days, weeks months of my life, when there are people out there struggling just to survive, and they’re crushing it. Keep flexing on life Steffi, you’re a gem, and someone I just recently discovered (this was the 2nd video) who inspire me to start appreciating the time I have, I need to make better use of. Is there anything I can do to help?

[@Humgin1234]

Blessings to you

[@3sgteyota]

Same here.

[@sleep.eat.repeat6786]

in the midst of political unrest, racial tension, coronavirus, looting, etc...you are a breath of fresh air! been following your journey for almost two years! stay wild! thanks!

[@desariawalton2739]

I deleted my Facebook and came here

[@exzisd]

I've been following as well and had the same thought. Its a glimpse of something good amidst the horrors going on in the world.

[@Corn22]

don’t...ignore the racism though...lol...people need to join together to fight against it not ignore it

[@EugeneAxe]

We definitely need a lot more good people like Steph out there.

[@debnollette7882]

Breath of fresh air indead!

[@Furby420]

My aunt is a scientist, she worked on this!!! So happy to see her hard work put to good use 🥰

[@Lisa-qt4hh]

Bless her 💕👏🙏

[@lisalovespie5626]

thank you so much to your aunt, what an incredible lady!

[@Furby420]

@@lisalovespie5626 thank you! Shes part of a team now working on a corona vaccine!

[@kidzinamerica2008]

lily pea Godspeed 🙏

[@hollyfisher8811]

Wow~A Healthcare HERO💝🌠!!

[@MayimHastings]

Stephi, my Dad was a respiratory therapist for 40 years and a pioneer in his field. He still remembers all of the cfers he treated, and at dinner every night when I was growing up he would talk about them as though they were his kids. When I told him about you and trikafta, he cried and then danced! You are such a warrior and such a strong and beautiful soul, Stephi. You have already left an indelible mark on this world - just think of the trouble you can get into now! 😁So proud of you, girl! 💙

[@GroundbreakGames]

This was honestly the sweetest youtube comment I've ever read. Thank you for sharing that story.

[@melon9456]

reading this made me so happy ; ; give your dad a huge hug for me he sounds like a total sweetheart

[@ck4603]

I’m an RT, too, of 20 years, and it is true....these kids become like one of our own because we spend so much time with them giving them their treatments and chest PT. You get to know them personally, and grow to love them deeply. So far, I have witnessed over 40 CF deaths, and it is so hard every time one of my CFers pass.

[@TracyD2]

Your dad is amazing

[@MayimHastings]

Groundbreak Games Aw, I’m so glad it made you happy! 😘💨

[@CarlosRamTx]

I ended up here on her channel from a random van life conversion recommendation. It turned into so much more. Thanks you tube.

[@brizzleshizzle8096]

Same here. Pretty cool finding a great human being. Congrats on all your success.

[@willhe86]

I can definitely tell a difference you seem so much brighter.

[@wyoruss]

I remember watching your videos when you 1st tried the drug. I'm so glad the drug is working so well 6 months later. This is great news for the cystic fibrosis community.

[@arkansas_native86]

I remember that

[@DominiqueRoseASMR]

Omg you're here! 😃 Love you guys' videos! 🥰

[@rain-wanders]

This video made me cry tears of happiness. I lost my friend from CF when we were both 26, 12 years ago, and the fact that they've found something that gives people with CF some true relief and hope to live a long life. I know you mentioned a lot of side effects, so I definitely don't want to diminish that, but I am definitely so hopeful for the progress! I'm sure Eva is dancing in heaven now with happiness for this hope.

[@cractus5137]

I cried when I watched your 'why my voice is weird' video and I'm about to cry again. This time it's happy tears ♡♡ I'm thrilled that this planet gets to have someone like you around longer.

[@rachellynn6045]

I thought the same thing and oddly enough, I think she was wearing the same dress in that video! Now I have to look for the video to see......

[@CorneliustheCatASMR]

same. She's lovely to see.

[@ZoeThomson00]

What a full circle moment

[@fredstratton555]

My son has CF and was put on this drug. Amazing! He turned 31 on August 2nd. New lease on life. Thank you for the video.

[@stopthephilosophicalzombie9017]

What a blessing. We all have no idea when we could fall ill (especially now with the pandemic) and we must remember to love each other and make the most of our time on Earth. I hope he is still doing well, and you too!

[@angelfujiyoshi6937]

I'm so happy for your son. My baby girl would've turned 31 on August 3rd. She passed away in 1990 at the age of 6 months (we didn't even know she had CF until it was too late. We thought she had the flu as the symptoms hit suddenly and she passed away within 2 weeks after being hospitalized). Im so happy to hear about a treatment now.

[@joshi3518]

@@stopthephilosophicalzombie9017 Most people don't deserve any love

[@stopthephilosophicalzombie9017]

@@joshi3518 sounds like you didn’t get enough when you were a kid

[@katkohler]

Trikafta came at a crucial time in my son’s life. He was very depressed, nearly giving up on life. He is now at 80% up from 40%. He will be celebrating is 42nd birthday in March 2022.

[@lisalovespie5626]

wow i could only dream of getting into the 70% range! i'm sitting on 35-40% and haven't had a consultation for 4-5 months due to covid so i could be a lot worse now and not know it, Trikafta is coming to the UK though possibly in July, if not August and i'm so excited for it! i just have to live til then lol

[@opalfishsparklequasar8663]

I'm sending all the 💖 & prayers- every minute brings you closer to getting your trikafta! It WILL happen. 😚💞🌷

[@justinx590]

Bless you. You're in my thoughts.

[@Barbie4U2]

Hang in there.... you can do this. You’ll get there. Stay strong. ❤️ 🇨🇦

[@hollymonte9462]

You will get it Lisa!! ❤️🙏🏼🙏🏼🙏🏼 praying for you to get that medication and live so freely!

[@ThePollydoodles]

yayyyy UK CFer here tooo .. soo exciting!!!

[@Sixty_Five_Pronghorn]

I got on Trikafta right around Christmas last year. The “purge” was gnarly for me. I’ve always had exceptional lung functions and very little mucus in them, but CF wrecked my digestive, reproductive, and endocrine systems pretty badly. I was super sick for the first week as my body rapidly purged out mucus and readjusted. I avoided going to the hospital by pounding quarts of apple juice with prescription-level laxatives twice a day, and also had to take less enzymes with every meal. I also kept getting sharp pains just below my ribcage by my liver, which was supposedly my gallbladder coming back to life and pushing out gallstones in the process. That wasn’t fun. But, after that, I’ve been the healthiest I’ve ever been. At 19 years old, I’m so much healthier than 5-year-old me, which is insane because CF gets worse with age, and it was for me before I got on Trikafta. But, Trikafta seemed to reverse 19 years of damage and then some within a week. I eat way less but have managed to gain over twenty pounds since starting. Before, I used to eat until I could feel the food climbing up my esophagus, but I rarely gained more than a pound every three months. Now, gaining and maintaining my weight is extremely easy. I can eat things like dairy, bacon, peanut butter, and sugar without suffering from a gastrointestinal exorcism three hours later. My physical workouts actually give me results, when in the past, I was extremely weak and frail despite being an avid outdoorswoman. I can tolerate heat and cold better. I don’t have as much salt on my skin when my sweat and tears dry. And, my lung function has gone up even more since starting. It used to be in the 90-110% range (100% LF is dead average). Now, it’s consistently between 115-130% range and I can hold up to 4.5 liters of air in my lungs (which is insane for a woman my size and age (19). Unfortunately, Trikafta fucked with my mental health. I had to get on medication for anxiety and depression for the first time. I’ve battled anxiety/depression for years, but Trikafta seemed to exacerbate the problem to the point I was having multiple anxiety attacks some days, and I couldn’t get out of bed other days. Thankfully, my medication has kicked in and seems to have improved my mental health, but I still have anxiety/depression. Being isolated since early March hasn’t helped my mental health, especially since it wrecked my college/work/family/friends/hunting/fishing plans, although I have been getting out and doing safe and exciting things with my little family (who have also been quarantined with me since March). I can’t wait to get a covid vaccine so I can get on with my life with my new body. Before Trikafta, everyday was a struggle, and I was afraid I’d be unable to attend college or hold down a job like a normal person. Now, as long as I take my meds, I’m basically a normal person. I still have CF, and occasionally it likes to rear its ugly head. But, I’m doing 1000% better than ever before.

[@ApacheFPV]

Beautiful story, honestly. I love to hear about a drug that isn't complete BS and actually does what it was intended to do, I don't have good views towards prescription medications for the most part but id personally shake the chemists and scientists hands on this one.

[@sjp41]

I'm so glad things are looking up for you. Even if not everything is perfect, it seems to me that you've been through the harder stuff already. I hope we all want drugs like Trikafta to be more refined so that these side effects don't affect people so much. That being said, remembering to enjoy the life we have is something we should all do! :)

[@OneLove101.]

@Camo Horse This is amazing news. I’m so sorry you’ve had such a rough ride MH wise ❤️ but I am so glad you can’t breathe so much better. This is such a brilliant breakthrough in treatment 🙏🏻💗

[@Starz1288]

Omg this is a so sad, but also so awesome!! I hope you are doing amazing!! But OMG I hope you didn't get that covid shot! & if you did I hope your doing well still...

[@Sixty_Five_Pronghorn]

@@Starz1288 Of course, I got my covid shot lol! I've gotten all three of them. They've done nothing to me except keep me from getting covid lmao. I'm still getting better and better on Trikafta. I just got home from a three mile hike in the mountains

[@noisemaker205516]

I'm blown away that there is a drug like this available now. A close friend of mine passed away almost 10 years ago at 21 from CF and she was just waiting for the next drug, and the next, and the next- she knew there was a cure or treatment on the horizon and she never gave up. In the end, she literally had complications from a cold because of her CF and died- I wish she was here to see this.

[@Barbie4U2]

I’m sorry for your loss. I hope your okay

[@noisemaker205516]

Barbie4U2 thank you dear ❤️ it has been a long time but I miss her all the time. I know she’s somewhere watching, glad that her cf brothers and sisters will have more options for treatment!

[@cometjockeydave4041]

I know I speak for so many people when I say I'm so happy to see you doing so much better, and that this means a whole different, and better outlook for you, and it's awesome to see how much you love life, and how full of life you really are finally express itself.....now if only the whole Coronavirus issue would settle down I'd be curious to see what you get to do with your life. Much love, live well and be goid to yourself fo me.

[@cometjockeydave4041]

AAAGGHH!!!!! Stoopid autocorrect!!!

[@koserkm]

My sister in law just passed away from CF about a year ago. As far as I know she was the longest surviving person person with CF as she lived until she was 64. Her body just finally gave out. She lost the will to keep going but in the same breath she was an incredibly strong and courageous person. I miss her.

[@thomasgallegos2832]

So sorry for your loss and hers too 😢

[@themookshit]

wow she must of been strong !

[@nonenone2669]

Wow. I mean, she lived as much as many it seems. RIP to her though.

[@1fromtheroad]

My friend went at 51. He lived while he was here. Maybe now they are both well and hanging out together.

[@janellmartin7066]

I had 2 cousins die from cf. I wish this would have been available.

[@laneybug05kj]

This just hit me right in the feels. A good friend of mine passed away when he was 22 from CF. The doctors told him he would never make it past age 7. I really wish this drug was around 10 years ago because it sounds like it really could’ve helped him. I am so glad to hear that this has helped you so much though! I love watching your videos and can’t wait to see more :)

[@OneLove101.]

I’m so sorry for you loss ♥️

[@keeeksmonster]

I still can't even imagine how overwhelming it must be to prepare for your death your whole life and have most of your life be dedicated to a disease, and then suddenly there is this drug and you're not dying anymore I mean, the stuff you suddenly have to think about - a career, retirement plans etc adulting shit Must be terrifying and overwhelming at the same time as incredibly wonderful. Maybe you could do a video on your thoughts on that? Like, the "negative sides" of having everything you thought your life would be turned 180 degrees Would be interesting to hear your thoughts and how you're coping, there are not many people who have the priviledge to suddenly hope to live substantially longer and healthier than expected

[@TheKatarinaGiselle]

Great idea!

[@lisalovespie5626]

when i was going through high school i never cared about grades, i would sleep in almost all my classes and i failed almost all of them, highest i got was a C which was a miracle, i thought i was going to die a year after i left school (you leave school at 16 in the UK) but i never did, i waited around just thinking 'i'm going to die soon, i know it' and i'm now 25 and still alive somehow, i'm not very healthy though but i'm still kicking, it makes me regret not doing well in school, not figuring out a career or what i'm interested in, not wanting my own house because i was afraid of being alone knowing i'd abandon myself, when i finally get on Trikafta i'm going to be living for a lot longer and that's really something i never expected

[@evek2501]

I have to admit, I shed a tear when you mentioned your mom. She would indeed be so happy to know you are doing so well. Maybe there's a chance she knows... In the meantime, as a middle-aged woman that somehow got you on my KZbin recommend page many months ago, and have followed your progress ever since, I'm sending you the biggest mom hug from here. xoxo

[@rainyseason1975]

I’m in healthcare, specifically currently in quarantine units. This girl right here....she’s why you need to wear a mask. I wish people understood that. I think it’s ridiculous when I go to the gas station wearing one and people go...oh you don’t need that...then I’m just like...”yeah...but trust me...it’s better for u if I do”.

[@reneebrady8389]

I wish more people understood this...thank you for the reminder! Also, thank you for your care during this horrible time (and anytime, honestly)

[@mariajoaoprimo7218]

Exactly !

[@1224w]

I am a CNA and I tell people this all the time. It irritates me how selfish some people can be.

[@laurensullivan1522]

Exactly. Its a small thing EVERYONE can easily do to help prevent others from being infected. Its selfish not to and socially irresponsible. I go to New Hampshire from Massachusetts once a week. They don't require masks there, but I still wear one. I know it's hot outside and kinda sucks, but the risk of infecting others far outways your own comfort.

[@biancahellberg587]

@ But you can only isolate so much. Masks can only protect things from getting in to some degree; if everyone wears one, however, we can stop droplets from leaving the person who originally breathes out and reduce the amount that gets to those who are sick. I know that wearing a mask is inconvenient to most people - my family and friends aren't happy about it but they grudgingly do it, I don't mind because I used to live in East Asia and it's common courtesy to wear one when you're sick. But hopefully we don't need to always wear masks, and maybe with society being a little less self-centered and more concerned with the general safety of everyone, we could make some progress. Sure, I can't force you to agree, and I'm not trying to guilt you into doing anything but I also know that I would want others to not consciously put me at risk if I'm already doing my best to stay out of danger as family members who do groceries may already carry the virus. Lastly, excuse my English, I feel like there's a bunch of mistakes in this comment but I'm tired and struggle to translate my thoughts tonight for some reason. Could be worse, yet I still hope you get what I mean and maybe just think about the position others take as much as I try to consider yours even though I disagree on what to do.

[@DallasFancher]

I caught your van build videos and saw this video about you. Thank you for sharing your struggle; definitely sending the best of vibes, thoughts, prayers, etc your way. Bless you.

[@the1rawdawg]

Us humans take so much for granted. So glad you're doing better.

[@catherinespark]

This comment made me laugh! "There are humans, and there are people with cystic fibrosis"! I know you didn't mean that at all, but it was quite funny! :D

[@jerrywallen3603]

I'm so happy that you can have a somewhat normal life now, love seeing you in a happy healthy mental state

[@elainepatton3825]

You were meant to live a very long and glorious life. 🗻💜🚐🌼✌

[@FischerRestoration]

Bless your heart Stephi.. Stumbled upon this video after watching your van conversion videos. I knew that there was something very special about you ❤️

[@AuthurFoxache]

I have zero idea why KZbin recommended this video for me, but I'm incredibly thankful it did...

[@mediterraneandiet2483]

Serrapeptase and chronic airway diseases. www.researchgate.net/publication/10619052_Effect_of_the_proteolytic_enzyme_serrapeptase_in_patients_with_chronic_airway_disease

[@dakotastarr9334]

Same! This is the first video of hers I’ve seen and she’s been inspiring me so much to do more art and just live life more peacefully

[@cazavion]

Same!!

[@Ielusivemusei]

Same

[@ClifHaley]

This is exactly the comment I was going to make.

[@s.h.4241]

As a mom I can only imagine how big of a smile your mom would have on her face to see you so healthy.

[@jackstanley6739]

Her mums dead

[@Yobydobie]

Jack Stanley that’s why she commented that...

[@sherry5305]

The improvements have been insane , legitimately sound like a new person when you're talking

[@melvyns1975]

Omg 40% to 75% lft's is amazing, im around 40% at the moment,im 45 years old and have scarred lungs so not expecting that much increase,id b happy with 10 point increase to 50%, starting kaftrio (uk name)in a few weeks,cant wait to get going. Keep fightng

[@chocolat917]

Hey just saw this comment. Any updates??

[@melvyns1975]

@@chocolat917 hi,thanks for asking,update, so been on kaftrio for 7 weeks now and the difference is unbelievable, blow has gone from around 40% to around 53% (even blew a 55 one day).. no more coughing fits,no more hymoptosis, no more rib pain from coughing all day,can fall asleep without coughing all night, alot more energy to do things,exercise tolerance increased and I've put on a stone in weight lol (even considering going on a diet) kaftrio is a wonder drug

[@chocolat917]

@@melvyns1975 that’s awesome!!! Thanks for the update. So happy to hear you’re doing better 🤗

[@crazycatlady2162]

@@melvyns1975 so glad things were looking up? After 11 months since you originally commented, do you have another update? I'm very curious about this drug. I do not have CF and don't know anyone who does, however, this drug seems so amazing.

[@melvyns1975]

@@crazycatlady2162 hi,im doing great health wise..been on Kaftrio for 11 months now and my life has completely changed, I've even got a dog now and we go walking everyday,no chance I could have done that a year ago. Sleeping is a massive difference now,rather than coughing all night I can actually fall asleep in a few minutes. I barely cough now and can't remember the last time I had a coughing fit. I have so much more energy. I've even been able to stop about 5 or 6 medications as I no longer need them.Spiro (breathing test) is up to 58% from around 38% before the Kaftrio.Also able to go for meals with the Mrs now,didn't bother before because coughing so much was embarrassing lol. Yeah so all good..Will update again in a few months,thanks for the interest 👍 take care

[@greyjay9202]

What a lovely and articulate young woman. Bless you, Stephi.

[@stephroses95]

I’ve watched you for years - not knowing this would hit so close to home. My niece was recently born and has CF. Knowing of you and your journey gave me peace, thank you!!! Hope for the CF community ❤️

[@BMarie774]

Steph Roses In an ideal world, no child would be born with it. But your niece was born in literally the best time. These medications may not only treat her symptoms and let her live a healthy life, but it will likely prevent scarring. One major issue in people with CF who grew up with it before all this is scarring in the lungs. Which...isnt reversible. So since your niece can prevent those crazy symptoms, the scarring should be less. I'm wishing her the absolute best!

[@limlrumerl-6922]

You are such a cute person! I'm so glad you're doing well. Claire Wineland would be so happy to see a fellow CF patient living her best life! :)

[@epochdoc2259]

You inspire me. I just bought a 2006 chevy 3500 church van.. I have been going through all your vids for great ideas for my conversation. I am a disabled Vet and have a similar prognosis minus the specific disease processes. I so want to go see the biggest ball of yarn. Stay positive. Again you are awsome. Much Luv.

[@patrickoryan3125]

This girl is such a hardcore badass. Love you dude keep it up

[@schweppesz9215]

KZbin randomly recommended this video to me. I am glad it did. You are a beautiful person inside out. I wish you all the best. Take care of yourself and stay strong.

[@justasub]

schweppes Z, same!

[@JenLovesBenz]

I can't even imagine having the feeling of not being able to breathe properly every day..

[@libertyschultz9807]

I dont have experience with what she has but I do have experience with lungs filling up with fluid. If you or anyone is curious to what thats like, it feels like going underwater and accidently breathing in the water and coughing long enough to where you feel like you're going to pass out. Your whole chest burns and gets sore and before and after getting lungs drained, its like as if something or even someone is constantly sitting on your chest and than getting up and hitting u when you try breathing. Laying down sucks no matter what position i am in and I depending on the day, even lifting my 1 year old daughter feels like I'm going to pass out. Im 20 and ive been going through this for 2 years now and the last time I had to get my lungs drained of fluid, was the week of my birthday the last week of december 2019 and i had to have surgery and even had to be resesitated. I'm doing better than i was but after having surgery to prevent fluid from filling up my lungs im scared that one of these days I'm going to have to start over or possibly never wake up or even see another day and it sucks cause I dont want to miss out on my daughter growing up.

[@kyssedbyfyre915]

As an asthmatic (among other invisible illnesses), I can relate completely! I have had pneumonia, upper respiratory infections and bronchitis of course, and I've been to very high altitudes. Oxygen starvation feels AWFUL no matter the cause. I always tell ppl, imagine letting someone hold a pillow over your face so you can't breathe. THAT'S THE PHYSICAL STRUGGLE. ♥️ It's the long-term mental/emotional effects of chronic illness that able-bodied people should HOPE to understand. I've received judgement/hate because people can't SEE my disabilities. I've gone from a person people described as "endlessly optimistic" and "bubbly" to a person on cardiac rehabilitation because I got so sick that I lay in bed and just nearly gave in to the depression. Chronic illness is a lonely path for many. It doesn't have to be.

[@cacamoto5395]

I’m so happy my lungs aren’t bad. But my Epiglottitis doesn’t work so when I breath I have to massage air bubbles out of my neck. And I nearly suffocate, because I can’t breath until I get it out.

[@cjam3660]

Hi Stephi, I'v followed you here on KZbin from the beginning, listened your family history, held tight through all your health challenges, watched your awsome adventures, van build and now getting to see you feeling better, my gosh what an amazing person you are, im so in love..lol. Hope your 2021 rocks.

[@roneteus]

Oh, man. This is like watching that depleted health bar in fighting games going back from red to green.

[@john3Lee]

What a beautiful human being you are.. And, an inspiration to everyone...

[@andrew30540]

Stephi, eat foods that support liver health to possibly help counteract the negative side effects of your medication. So happy that you are feeling better than ever!

[@sackme4377]

I think she knows how to handle her own medication in conjunction to her daily habits, dude.

[@hikaruyume901]

The Ghost King yo he just gave her some advice, why are you so triggered?¿

[@sackme4377]

@@hikaruyume901 How am I triggered? All I said was I think she knows how to respond to her meds XD.

[@abbeyjane1306]

I'm following your van built...doing a transit connect myself. Thanks for the update on your health and congratulations on your progress.

[@buffalokid2291]

You've been given another life, more life. You sound so good. I'm so happy for you. I follow you because I've had a lot of chronic medical problems that have been, at times, very life threatening. I relate to your story and I know what it feels to be given another chance at life. I have no doubt you'll take full advantage of it ! Your courage despite of a looming "date" has given me strength in the past, so thank you. You're a strong girl. Congrats on the extra life !

[@AzuraDragonFaether]

I thank god everyday that this medicine exists. I’m so grateful we get to see you recover. I feel like I’m hearing your speak for the first time. I am so happy and grateful to still have you with us Stephi. I’ve always admired your smile no matter what your struggles. You have such an ethereal energy about you. It’s incredible to witness you shine like the bright star you are. So much love from Cali. 💗

[@lynettez72]

My best friend growing up died at the age of 16 to CF. I saw how she suffered every day of her life in so many ways. CF robbed her on a daily basis and then it took her life. I can't tell you how happy it makes me to see you kicking this diseases ass on this new medication. You are so brave and truly a hero. Much love Stephi!

[@jefflop]

Hi Stephi. KZbin recommended me watch one of your van buildout videos. I liked it so they recommended this video. I had no idea what to expect. Let me just say that your video touched me and I went from "OH My God, NO" to "I'm so glad you found a better place". I admire your bravery and commitment to yourself and others. You are an inspiration. Thank you for sharing your story. It will mean a lot to so many. Keep your head up and motivated. The world need you!!!

[@bombadeer8231]

Your mom would be thrilled 💕

[@jamesconant1697]

I watched my little brother go through it all, finally took him after 25 years. I wish you the best and shall pray for you.

[@brielleanyez7113]

James, I'm so sorry for your loss😢

[@Barbie4U2]

Im so sorry. He’s with you... even now. ❤️

[@Sara-gc2zy]

My mom passed away in August from copd, a lung disease. She had pretty much all the same symptoms as you, i helped care for her and it was very hard to watch. I had a child at 17 and because of that my mom got to experience being a grandma and it brought her so much joy. I know copd is not the same as sysstic fibrosis but I am so glad to hear you are feeling better 💕

[@ToDahRANDOMOBILE]

Sorry to hear that Sara. Your positive outlook is so beautiful, you seem like a wonderful mother

[@MsKiprusoff]

Wow you're mum was so lucky to see her grandchild. You are a gift from God 💙💜💙💜💙

[@galbright3594]

I'm sorry to hear that, I lost both of my parents to lung disease so I know what you are talking about. I cared for both of them before they passed.

[@konekostone]

I have copd and it definitely puts a strain on a person's life. I'm sorry to hear about your mama. Revelations 21: 3,4 states that everything that causes us grief will be gone soon.

[@TheKatarinaGiselle]

My dad passed away six years ago from COPD..I miss him so much!

[@TMFXLLC]

My dad's childhood friends, identical twins, were born with CF. They weren't supposed to live into their teens. They're unstoppable industrious guys with full lives in their mid 60's now.

[@arrib528]

Your smile melts my heart. My friend Trisha passed away a few years ago due to CF. I can honestly say she was an angel on earth. Always sending love and prayers to you and your health. You're gorgeous inside and out.

[@hollyfisher8811]

So truly sorry for the loss of your loveliest friend here on Earth~May she fly high now forever🙏🌠💖😇:)

[@JessicaKent]

I just found your channel! I absolutely love you! I'm so glad you have this new medication ❤ You're a warrior!

[@ArcticXun-936]

@Jessica Kent So are you ;)

[@brittneybrommels8497]

So glad your following her Jess she such a gem ! Love you Jess 😘

[@chelseyburg5796]

I absolutely love this video! I am 26 with CF and I started Trikafta in November 2019. I ended up spending thanksgiving in the ER because I had a bowl obstruction due to Trikafta just clearing out my system. Like if you have a kink in a pipe and its on a slow trickle, it'll flow fine, but when you turn up the volume, then it gets clogged. I'm thankful though that that has been the only negative side effects I've experienced. But I could also definitely relate to what you're saying about feeling anxious from it because now there simply IS a future to consider, where as before Trikafta there was so much uncertainty about how much longer we would live. My lung function was down to 35% when I started and I have seen very slow progress since starting, but recently I blew a 47% which made me happy. I would be completely over the moon if I could just get back to 60, which is where I started to notice a much more steady decline. But on top of that, I'm now able to exercise more which I think will really help to keep improving my PFTs! I will be wishing you all the best on your journey with CF and Trikafta. I'm so glad to hear your story with it all and I hope you continue to do well!

[@fff-cf4fx]

Just found your van series and then this. What a great explanation and encouraging video for people dealing with the same issue.

[@mariahjane7969]

My little brother died at the age of 25 from CF I wish he could've had the opportunity to enjoy a medication that gave him relief from the constant coughing and other symptoms. He lived his life in a study so I hope his medical experience helped to create a better life for you and ppl like you.

[@Barbie4U2]

I’m sure it did help. He was a warrior. God bless him and you!

[@thekellyjones821]

There’s no doubt his life made their life better. My deepest condolences on your loss. Prayers and well wishes to you and your family. 🥰

[@kimberlylindner2898]

Thank God for science, doctors, and medication, I'm so beyond happy for you and glad to hear things are looking up, you've always been an amazing women and your definately going to and have helped so many people by sharing your story..

[@anh7807]

What bugs me is many will claim being vegan, essential oils, or yoga will fix everything then insult medicine.

[@旮旯北京]

@@anh7807 It is 2020 already, and I am still single 😨😰😱😓😓😓🥺🥺🥺

[@jacobrackham432]

Alicia A - it’s a case of using conventional medicine alongside alternative treatments. Nothing should be written off till it’s proven not to work.

[@EmmaPottsx]

If the doctors haven’t already definitely ask them about a possible stomach ulcer, I had dull pain for weeks, sometimes very painful, constant bloating at the top of my stomach and it turned out to be an ulcer, took 15 weeks to clear with lansoprazole 60mg but we got there in the end!

[@catsmeow501]

I have been watching you right before the drug came out and have watched you get better and better. You were so brave to try and live your life like an able bodied person, and now, wow, there is nothing you can't do!! So proud of you, Steffi.

[@rrhodes4433]

Stephi, I had the same pain at the top of my stomach and was diagnosed with a hiatal hernia. You might wanna get checked for it. IM so glad you are doing better and I can just see a huge difference in you overall. So happy for you!!

[@anh7807]

I had a similar pain but it went all around the right of my ribcage. It was gallstones. Definitely a "side effect" she should get looked at.

[@101sanford]

@@anh7807 are u okay

[@chrissiecarr5721]

CF affects the digestive system, as well as many other organs.... I’m sure the pain has been looked at....🙋🏻‍♀️

[@101sanford]

@@chrissiecarr5721 some people are mean to me

[@Debilitator47]

The algorithm brought me here. My friend Heather didn't make it to this point. I'm glad that there's hope for you and others. There's some onions being cut nearby but they're the good kinda onions. May wellness stay with you, and the brain fogs clear up.

[@mikeg6285]

This hits close to home. My good friends brother has Cystic Fibrosis. I think he just started this medication, but his life expectancy was about 25. Hes almost 30.

[@mediterraneandiet2483]

Serrapeptase and chronic airway diseases. www.researchgate.net/publication/10619052_Effect_of_the_proteolytic_enzyme_serrapeptase_in_patients_with_chronic_airway_disease

[@ImprovisedExpletiveDevice]

Very happy you got this. Thanks for also reminding me not to take life for granted. Wishing you a long happy life!

[@user-bj2lu9qt3o]

This is so wonderful Stephi! I hope the side and longterm effects will get better with the improvement of the med!

[@kimizareborns6936]

So happy your doing so well. Love how your straight forward in telling your story. 🧡

[@kaileashields875]

Your voice/projection is BEAUTIFUL. You’re glowing!! So happy for you. ❤️❤️❤️❤️

[@VancouverJeff]

I’ve been watching RV videos and solar power videos and came across your video of installing solar panels on your van. I’m so grateful to have found your videos. I’ve watched a few of them and I really admire your attitude and OMG I love your tattoos!!! I look forward to watching more of your earlier videos and I appreciate your candor and just how you are so real. I haven’t checked Facebook or IG but, if you’re on those platforms, let me know! You are fascinating and inspirational! 💖

[@ZZzalexnfriendszzZ]

I lost both of my Sisters to Cystic Fibrosis. Jessica when I was in 6th grade, and Amanda in 2013 when I was out of high school. I have been watching your videos over the past year and am rooting for your battle. I wish you the best luck and wishes for further improvements.

[@invisigrl]

So sorry for the loss of your sisters. That must be so hard. 💕

[@ontheroad579]

So sorry for your loss.

[@cynthiaarthur2967]

I'm very sorry for the loss of your beloved sisters. I know your pain !! 💔 My youngest brother died when I was 12 yes. old in a house fire. My 2nd just 4 wks. ago. It's hard !

[@christakintner9412]

Oh my God. I have never heard anyone else talk about the coughing from laughing. It almost made me cry when you said that because I have scleroderma and asthma and always has chronic bronchitis but ever since I was in the hospital for pneumonia about 10 years ago my lung function has never felt the same. Especially when I laugh I cough and will start to "see stars"...some of the side effects you were taking about from your med too I get with all if the meds I'm on. Thank you so much for posting these videos.

[@janielangley5673]

My husband had CO2 build up when at End stage COPD, the build up would cause Bloat. I am so happy for the relief you feel now. You are mature beyond your age, sweet girl. My Prayer’s upward for your continued good health.

[@cathyhowell1294]

Hey Stephi, I'm so happy that you got that medication! I happened to stumble onto your channel when I began researching tiny houses. I lost my house because I've been sick for many years and finally wasn't able to work and pay the mortgage anymore. I've been living with my sister + brother-in-law for the past 6 years + the cost of renting an apartment in Montréal, Québec is just way too expensive for 1 person on a disability cheque. So I started looking into the idea of building a tiny house which isn't as costly, but still requires a mortgage from the bank which is a pipe dream for me until I'm able to work again. I also love the idea of living in a van or RV so that's how I found you! Where do you park the van while you're working on finishing it up? The by-laws are pretty strict here where I live so vans, campers + rv's can only be parked at designated camp sites or RV parks. Anyhow, I'm glad that I found your channel + that you are doing well. You have inspired alot of people by telling your story + showing how hard you've worked to make your dream a reality!! Take care xxoo

[@fengy5629]

my mother was a nurse, and became very close with a young patient with CF. she knew her before i was born. i met her only a few times in my childhood, but she passed over a decade ago after two lung transplants. she was 21. im now older than she was. i saw her on the last day of her life, blue-lipped in bed and trying so hard to talk to me. in the grand scheme of things, 2007 doesn't seem like too long ago, but it's long, isnt it? she never even heard of trikafta. i love your voice. i want you to live for a long time.

[@sdufrane31]

Stephi, after seeing you struggle for years, I am so happy to see you doing well! This video made me cry tears of joy for you. I hope you continue to stay healthy for many years to come.

[@georgia1986]

so happy! sending love and light your way x

[@richardharding758]

Thank you for sharing your story. You are an inspiration. Your van build brought me here. I just subscribed. Lifting you and yours up in prayer. :-)

[@justsavie8823]

My husband is a carrier for cystic fibrosis-- he was born without a vas deferns. Thanks for education. Be safe.

[@theunofficialhindu6883]

We're really pleased this drug has made such a positive impact in your life, we hope you have full, wonderful, happy life :) We love your videos xx

[@melaniegee]

I’m so happy to have found your channel. Watching this video made my eyes leak happy tears. As a mom, I can tell you you’re right about how happy your mother would be right now. 💕💖💕

[@mwurslin7152]

Wow Stephi... I stumbled onto one of your van build videos which led me to this one... Now I'm even more inspired by your van build videos... To do things like that with everything else weighing on you is amazing.. I will definitely be watching more of your videos... Thanks :)

[@tonymontana3742]

Claire Wineland past away shortly after a lung transplant, happy that things have gotten much better for you.

[@alex-qd6of]

She had a stroke during the surgery, and died shortly after :(

[@peachxtaehyung]

It wasnt the surgery itself that did it though... She had a stroke afterwards

[@WhitneyReacts]

@@peachxtaehyung She never even woke up from the anesthesia...it was such a sad story...

[@chary361]

I think Claire lived more in her short life than most people EVER do. She wouldn't want you to be sad for her.

[@colleenshaw1607]

i know!!! she was so close for this being her reality too. so glad there's now hope for those with CF

[@debnollette7882]

I love this so, so much. Your voice has changed incredibly. Your struggle was something that, although you tried to hide, was evident to alot of us. We love ya kid!

[@PapaJoeB]

Much love to you, Ms. Stephi! I'm so happy for you. It's been great watching your journey over the years

[@babbalouie3074]

Happened upon one of your van build videos. Did not realize you had health problems until I watched this. So glad you are feeling better. May Mother Earth fill your life with peace and love.

[@JohnFjustice]

My brother had CF and I miss his every day. I am glad they have made advancements. I am thankful to have had him in my life, he taught me how to live truly. My heart goes out to you.

[@thehippiecatholic]

I always feel like Claire Wineland’s energy was somehow involved with the progress with this medication. I’m so happy you’re doing better! 💕

[@baileybayer9462]

You are a warrior. Much love, and keep striving to reach even greater heights of prosperity

[@KansasOff-Grid]

Your such a beautiful soul and I'm glad your still with us. You really should contact that company and ask them to sponsor u. they really couldn't ask for a better commercial or advertising for there product. Keep on living life to the fullest. Love the Van.!!!

[@merryjane2095]

If you're forgetful about if - and - or - when you've taken your medication, DEFINITELY consider picking up a pill holder with individual spots for each day, including a.m/p.m. to better assist you, my pretty!😘💞

[@aliduran7446]

They are in bubble packages that you can see whether you have taken it or not

[@Barry_Garza]

@@aliduran7446 Well then you have to worry about keeping track of how many you had left in the pack which is still difficult for situations like hers where you forgot if you've taken them. Sure you see you have, say, 5 left but how many did you have yesterday? Filling up a weekly pill holder once a week with am/pm slots requires no prior knowledge other than the day of week (which is a lot harder to forget and easy to reference) when you come to take it. Not sure you took your pill in the morning? Just check your am slot etc.

[@amilo5]

The ingenuity of humankind is amazing. And without modern medicine we would not be here today. Keep on inventing and keep on fighting.

[@amilo5]

@Revolutions For Tomorrow COVIDVACCINEHELLFIRE Thats why not only medical help is important but also mental help to clear up maniac delusions like this one. I am not afraid of the future like so many others because the numbers of science are on our side. And compassion will lead us to invent vaccines to heal the great plagues. First smallpox and covid will be next to be erradicated. Countless other diseases are gone forever not because of believe but because of science.

[@infinitecuriosity9210]

Sounds like absolute hell stephi, incredible you found your miracle drug, that's incredible. You persevered thru HELL, TRUE WARRIOR. now that you have some freedom, are you reimagine life? Bless you stephi,

[@duane8620]

This was my first video of Stephi and I am happy I found it! Great video Stephi and congrants on the successful drug treatment! Great news and HOPE for so many people living with the same condition. Great news and you're looking GREAT! Wish you the best of luck finding your new routines in your *new life* !!!

[@mariodimitriadis]

I'm spechless. Literally crying rn. I have had my fair share of lung difficulties and scarring over the past few years and I must say I never could have imagined how horrible it is. All the best to you and all the people put there who finally have found hope.

[@mykalnorsworthy4262]

Good to see that the drug you are taking is helping

[@Jeremy-uw1np]

This must be crazy for your life goals, considering how much more time you have! So happy for you, know go live!

[@wishfulthinking4566]

The difference in your speech is amazing! So happy to see you experiencing the simple things in life that the rest of us take for granted! 🙏 Wishing you an amazing long and happy future! 👏👏👏

[@natjo7739]

Such a miracle. Thank you to the scientists who made this drug. Thank you Stephie for sharing. I am so happy. This made me cry

[@healer246]

I worked at a peds pulmonary clinic and cared for kids with cf. I’m happy to hear this!

[@_-Limbo-_]

You are a very amazing young lady. You have had such a struggle, you very adorable. Glad you are getting better.. and your talent is amazing

[@JustDiane71]

Haven't seen one of your videos in forever. I love your van, came out awesome! I also wanted to say I'm so happy for you and getting your health on track. I remember watching you years ago and you could hear how hard it was for you to talk for a time and now you can hear the difference. You look amazing, you look healthy, very very happy for you!