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THREE MONTHS ON TRIKAFTA | It Changed My Life!

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The Frey Life

The Frey Life

Күн бұрын

Пікірлер: 550
@thefreylife
@thefreylife 4 жыл бұрын
Celebrating milestones! 3 months in and feeling so grateful!
@tamberjune
@tamberjune 4 жыл бұрын
Celebrating with you from California!
@aerya875
@aerya875 4 жыл бұрын
Please don't get this wrong, but has the new medication made you gain a tiny bit of weight? You look amazing and healthy so I was asking myself if it has made your body use nutrition better than before.
@puppys8998
@puppys8998 4 жыл бұрын
The Frey Life So grateful for this medication, Mary. It is crazy to see how much you have come alive over these past three months. I’ve been with you guys from the start and your transformation is truly miraculous. Praise God!
@ilonamollema6467
@ilonamollema6467 4 жыл бұрын
I'm celebrating with you!! God is good!🙏🏻 Big hug from the Netherlands. ❤
@saraschutz812
@saraschutz812 4 жыл бұрын
🎉🎉🎉 Celebration! 🎉🎉🎉
@amandarowland
@amandarowland 4 жыл бұрын
So sad Claire didn't make it to see this happen
@anastasiahey2327
@anastasiahey2327 4 жыл бұрын
I worty about Claires parents. How are they dealing with this..
@nickeisenhauer2334
@nickeisenhauer2334 4 жыл бұрын
@@anastasiahey2327 I think they would be happy that less people will suffer as their daughter did.
@angel_existential
@angel_existential 4 жыл бұрын
That's all I can think about seeing these videos. She even sounds like Claire a little bit. I'm so happy for everyone getting relief, I just feel like it's so unfair.
@annak3325
@annak3325 4 жыл бұрын
yea it kind of breaks my heart. the reason why is because claire made a video talking about getting her lung transplant, i specifically remember her mentioning her future thinking she never would have one and the sense of anxiety she was starting to have thinking about it. it was scary knowing she could live when she was told she was going to die young. and that small glimpse of feeling she had is what breaks me when i think about her.
@Jaisee14
@Jaisee14 4 жыл бұрын
Amanda it is sad that *Claire* didn't live to see this happen. If only she could have had the chance to take Trikafta and have a chance to feel better and have a far better quality of life. *Rest In Peace Claire* .
@trayas2272
@trayas2272 4 жыл бұрын
Imagine younger people with CF who can start this new medication now before they have accumulated lung damage. I bet their future is looking so much brighter!
@savannahhargis
@savannahhargis 4 жыл бұрын
trayas22 yes! I read you have to be 12 to use it but I think that’s so amazing.
@mcmelre
@mcmelre 4 жыл бұрын
Yes!! This is why we have so much hope. My son is 4 and will be able to start this in the next couple years, once the FDA approves it for 6 and up. He is currently on Orkambi and doing SO well, but Trikafta is what we have ALL been waiting for. I feel like I'm living in a dream, we are so lucky to live in this day and age 💜💜💜
@BareBohemianBeauty
@BareBohemianBeauty 4 жыл бұрын
@@mcmelre that's so incredible to hear, to know that your child will have a true fighting chance & not have all the awful organ damage. I deal w smth dif,.. I had lupus for years but since there's not a treatment that 'treats' v well (there is one but it's $70k/yr), things have progressed (even while on a dif med that slows progression yay ugh) & I now have around 5-6 autoimmune diseases + symptoms from others. ...MY POINT - my daughter is 15 & I'm having her tested for AI issues bc she has problems similar to me that no one else she knows has. She's much taller than me and grew quickly so for years we wrote her pain off as legit growing pains but now I'm not sure. If only we AI patients had a medicine to take that really did anything, that would be so reassuring. Esp since my new dx is dif than lupus. It's rare, serious, shortens life expectancy, & a basically guaranteed (barring an accident or smth random) that I will die from it. And there's no telling when:/ Everyone deserves a full & healthy life w happiness & I'm so truly thrilled for you & your child, for your family & friends, and everybody who gets to take this new drug! 💜
@keljells
@keljells 4 жыл бұрын
bare bohemian I understand you completely. I’m an autoimmuney too, I have AS, crohns, gastroparesis, chronic pancreatitis and exocrine insufficiency... where’s there’s 1 theres 5, right... a fun little group then with a whole host of little things not listed, you know how it goes, unfortunately. I wish there was a magic pill for autoimmunity. I’m on remicade methotrexate sulfasalazine AND prednisone and still get hospitalized for at least a week at least every other month. All they do is symptom treatment, I wish with all my heart they’ll make some headway and figure things out for us. I’m so happy they have found hope for CFers. I wish your daughter a good outcome and you the very best. Stay strong and don’t give up, I will keep you in my thoughts. Sending much love.
@victorcoutinho156
@victorcoutinho156 4 жыл бұрын
If I had one wish it'd a cure for that horrible desease !!!
@vanessahill7615
@vanessahill7615 4 жыл бұрын
I have been on Trikafta since October 2018. My story sounds very similar to yours, I had been in survival mode for years just trying to keep afloat. I had started transplant workup when I was put on the initial double blind trial. Within hours of taking the first dose I couldn't stop coughing up, it was like I just couldn't keep the mucus in. After 36 hours I stopped coughing all together. Fast forward a year I have started working full time (I am 30 and have never worked full time in my life) I got married earlier this year and didn't cough once on the day. My wedding video has no coughing and I danced for hours . The improvement in my quality of life is amazing I can't put it into words. I can't believe how lucky I am to have been given this miracle drug. I never thought I would have these results. I'm so happy that you were able to get access to this drug and I hope you continue to have amazing improvements.
@hayleymarse2853
@hayleymarse2853 4 жыл бұрын
That’s amazing! I’m so happy for you!
@Amanda-ob9jx
@Amanda-ob9jx 4 жыл бұрын
@ Vanessa Hill u go girl that's so awesome.. And it makes me appreciate life that much MORE as well!!!! Congratulations!!!
@picklep9812
@picklep9812 4 жыл бұрын
Vanessa Hill 💞
@plusnightlife
@plusnightlife 4 жыл бұрын
I am so happy for you and so glad you are doing well.
@debipowell9509
@debipowell9509 4 жыл бұрын
From my perspective as a watcher/fan, its a drastic change! She looks different, her coughing, facial coloring, her energy when she's communicating,.... just SO many ways, its such a sweet improvement for her!! Thank you, Lord!!!!
@wcrsb
@wcrsb 4 жыл бұрын
Thank you Jesus for that she is better
@CashColburn
@CashColburn 4 жыл бұрын
I haven’t watched a video in about 5 months and WOW does she look and sound so different. Her cheeks are pink and her voice is so much clearer. I’m so excited for them!
@lisamccullough5150
@lisamccullough5150 4 жыл бұрын
debi powell I can even tell a difference in her voice.
@afrisch202
@afrisch202 4 жыл бұрын
Science is incredible!!
@ProfessorSassypants
@ProfessorSassypants 4 жыл бұрын
It’s incredible just listening to her speak, she just SOUNDS better, that’s wild. Modern medicine is wild. I feel so happy for them ❤️
@Mizbit
@Mizbit 4 жыл бұрын
Yes!! Shes lost the raspyness and sound so much clearer. It's been awhile since I last watched an upload (since before the move) and she looks so so different
@Melodicfirefly
@Melodicfirefly 4 жыл бұрын
Thank you for making this video. I'm a scientist in the biopharma industry. In moments of frustration, we try to remind ourselves that our work has purpose and makes a real difference in patient's lives, but when you never see the results, it's easy to become cynical and jaded. For every one drug that makes it through clinical trial and gets FDA approval, there are hundreds that fail somewhere along the way. To spend years working on something only to have it be "for nothing" can be soul crushing. It's nice to be reminded of the successes.
@dream2451
@dream2451 4 жыл бұрын
Thank you for what you do. It's such a blessing to have hope and a longer potential future because of all that trial and error, time spent and so much more. I'm not a CF patient, but I suffer from a rare cystic lung disease and now have a treatment that wasn't the case 15 years ago. Not as drastic of improvement in function, but simply less decline. It's nothing short of a miracle.
@MoreCoffeePlease.
@MoreCoffeePlease. 4 жыл бұрын
Thank you for what you do. 💛
@ellespoonies
@ellespoonies 4 жыл бұрын
Thank you so much for what you do! It’s people like you out there who make my life livable and give me hope that one day there will be a form of treatment for my condition as well. 💕
@LC-sp9ox
@LC-sp9ox 4 жыл бұрын
Another scientist here doing gene therapy work... seeing videos like this is what keeps me going as well💜
@jillcurry1752
@jillcurry1752 4 жыл бұрын
Thank you for what you do. My niece is 14 and she has CF. Thank you for what you do. I have been praying for years and God does answer prayers. Nothing is ever 100 percent guaranteed. But it's an improvement. I love hearing positive results.Thank you for your labor and work
@caileigheagle4705
@caileigheagle4705 4 жыл бұрын
I just got approved for Trikafta!!! I can’t wait to start taking it. 😭❤️
@CashColburn
@CashColburn 4 жыл бұрын
Caileigh Eagle AHHHH I’M SO EXCITED FOR YOU! I’ve seen some other videos that talked about some rough intestinal pain so please be sure you’ve got some support in the first week. Fingers crossed you come through easy and improve quickly ❤️❤️
@caileigheagle4705
@caileigheagle4705 4 жыл бұрын
Cash Colburn Thank you so much!!!
@ButterflySimmer
@ButterflySimmer 4 жыл бұрын
Congratulations. I don't have CF so idk the battle, but just to see a new drug that so many people lives have changed is amazing. Good luck 😍🥰
@caileigheagle4705
@caileigheagle4705 4 жыл бұрын
Butterfly Simmer thank you!! ❤️
@brielleanyez7113
@brielleanyez7113 3 жыл бұрын
Awesome!! Best of luck, get better soon😊♥️
@katiescarlett1955
@katiescarlett1955 4 жыл бұрын
Since you started the triple......The physical difference in your outward appearance has been remarkable. Your mental appearance more remarkable. And your emotional appearance astounding. Could not be happier for you. I'd say enjoy.....but you are and it's awesome to behold.
@vincentjohnflorio
@vincentjohnflorio 4 жыл бұрын
I just went about half a year back in the videos and listened to them back and forth and there's an effortlessness that she speaks with here, a clean rapidity, that you just can't do when you have impaired breath control. It's pretty astounding.
@gia9551
@gia9551 4 жыл бұрын
I can hear the clearness in her breathing when she inhaled close to the mic. So so so awesome
@maaggiied2554
@maaggiied2554 4 жыл бұрын
I haven’t watched you guys in a while and your voice sound clearer in my opinion! My rare disease is a daily struggle and journey so I know when you find something that works or even just helps a little it’s amazing! So happy for you!
@thefreylife
@thefreylife 4 жыл бұрын
Thanks Maaggiie D!
@MJ_Hershey
@MJ_Hershey 4 жыл бұрын
I agree- it lost the raspy quality.
@emmawaitman9123
@emmawaitman9123 4 жыл бұрын
I agree it’s less raspy
@rwelch540
@rwelch540 4 жыл бұрын
My husband (who has CF) and I are going to CF Clinic tomorrow. Hoping to get an Rx for Trikafta!!!
@ChronicallyCassidy
@ChronicallyCassidy 4 жыл бұрын
rwelch540 good luck!!!!
@mommysaver71
@mommysaver71 4 жыл бұрын
Good luck. Hope you are able to get it and have great success with little side effects
@codename495
@codename495 4 жыл бұрын
Good luck!!
@christine0701
@christine0701 4 жыл бұрын
hope you got it!
@julialegge6064
@julialegge6064 4 жыл бұрын
Was he able to get it?
@tdlentine
@tdlentine 2 жыл бұрын
My son has cystic fibrosis, and has been on Tricafta for a year now and it is absolutely life changing! He's 15 and doing amazing! So awesome to come across your page, and so awesome to see all the things Tricafta has changed in your life from this video till now!
@catalinaguzmancantante212
@catalinaguzmancantante212 4 жыл бұрын
I love that she has even put on some weight
@grayskindablue
@grayskindablue 4 жыл бұрын
I’m both so incredibly happy for all the CF patients I see finally getting a breakthrough. Can’t help but think about Claire Wineland, I wish so much she was around to be able to try it. But she raised so much awareness and touched so many people, I can’t help but believe she was a catalyst for this.
@patricialynnmoore
@patricialynnmoore 4 жыл бұрын
Claire Wineland, as well as her Foundation, was definitely a BIG Influencer and made a BIG Impact on moving things forward quicker for the CF Community. It truly saddens me that she is not here in this life to see how TRIKAFTA is bringing a greater hope and life back into other CF'ers. Rest in Peace, dear sweet Claire. 🙏🙏♥️
@grayskindablue
@grayskindablue 4 жыл бұрын
Patricia Lynn Moore I feel like someone in the spotlight always has to die for a big change to begin to happen. It sucks. I think Claire would be okay with it though, because this is is so huge. She was always so startlingly okay with mortality.
@hydie0073
@hydie0073 4 жыл бұрын
I agree I've thought about Claire so much! She lived every minute of her life being that sick...One of the strongest ppl ever...and so beautiful inside and out! It is so sad...I am so happy that Mary and so many other's this drug will help! Xo
@IWillYouLove
@IWillYouLove 4 жыл бұрын
It makes me incredibly sad that Claire never got to see this miracle treatment in person. I know she’s looking down and is incredibly happy but I’m never going to be okay with her passing so tragically when a year later this treatment is available
@cysticfibrosiswarriorsbran6211
@cysticfibrosiswarriorsbran6211 4 жыл бұрын
I just started 4 days ago. Yeah im 30 too!!!
@arayofsunshine4556
@arayofsunshine4556 4 жыл бұрын
**CYSTIC FIBROSIS WARRIORS** Brandi F. I’m so excited for you ♥️😊
@cysticfibrosiswarriorsbran6211
@cysticfibrosiswarriorsbran6211 4 жыл бұрын
@@arayofsunshine4556 thank you... even though it not a cure, it hopefully will help to make us feel better...
@ilonamollema6467
@ilonamollema6467 4 жыл бұрын
I'm so excited for you! I'll pray that it will help you as well as it did for Mary!🙏🏻
@cysticfibrosiswarriorsbran6211
@cysticfibrosiswarriorsbran6211 4 жыл бұрын
@@ilonamollema6467 that's very sweet of you. I'm very happy that this medicine has been approved by the FDA because unlike some others, this medicine can help 90% of mutations
@mommysaver71
@mommysaver71 4 жыл бұрын
So happy to see others starting on it. Wishing you easier days with less mucus and not too many side effects,
@AbigailJoyyy
@AbigailJoyyy 4 жыл бұрын
I’ll admit, I haven’t been on KZbin in a while and haven’t seen any of your videos in a few months... That being said, I was shocked by how much clearer your voice sounds since the last time I heard it and the amount of energy you have in this video. What a praise!!!
@haydenrodriguez4670
@haydenrodriguez4670 4 жыл бұрын
I have a friend who has 2 kids with CF, and they start Trikafta tomorrow. I'm so excited for them.
@kristencrochets
@kristencrochets 4 жыл бұрын
One thing I've noticed is the change in Mary's voice! It is so much clearer! I'm celebrating with you guys!
@thefreylife
@thefreylife 4 жыл бұрын
Thank you for sharing in our excitement Kristen! :)
@emmadagostino8749
@emmadagostino8749 4 жыл бұрын
V520X would be a nonsense mutation - "X" means the letter V was replaced with a stop signal, which we call a nonsense mutation :)
@susanne5803
@susanne5803 4 жыл бұрын
This may sound weird. We had a really bad year medically: we being my disabled son as patient a d me as mother/ caregiver. And with his illnesses there's no stuff on the horizon that's even close to clinical studies. It's all empirical: if it kinda works, fine, if not try something else ... Yet I find this video so extremely encouraging. It makes me so, so hopeful to see such improvement with someone else and with a totally unrelated illness. But it reminds me how grateful I am to live today and what changes may still come. Thank you so much for letting us witness this special journey of yours! All the best wishes from Susanne
@thefreylife
@thefreylife 4 жыл бұрын
Susanne thank you for sharing a glimpse of your story with us, I'm so glad that our vlogs can be a source of encouragement and support for you & your family! Keep on pressing on!
@susanne5803
@susanne5803 4 жыл бұрын
@@thefreylife Thank you so much!
@susanplunkett5779
@susanplunkett5779 4 жыл бұрын
Yesterday's vlog Mary helped Peter move that gigantic bookcase upstairs. The lung function and accompanying stamina is mind blowing. A year ago it wouldn't have been possible. I think it's true as you'd said Mary seems almost at the healthier point before Scottland. I look forward to this new season of healthier days. What new adventures await.
@deborahtaylor8972
@deborahtaylor8972 4 жыл бұрын
My sister started this Saturday, I'm praying she gets the results that Mary has seen. I hope Mary keeps improving.
@thefreylife
@thefreylife 4 жыл бұрын
Deborah that's SO exciting!!
@patricialynnmoore
@patricialynnmoore 4 жыл бұрын
How is your sister doing thus far on TRIKAFTA?
@toni5543
@toni5543 4 жыл бұрын
How is she doing?
@mindybunny
@mindybunny Жыл бұрын
Any updates? ❤
@vincentjohnflorio
@vincentjohnflorio 4 жыл бұрын
Mary: "Numberizing" Also Mary, seconds later: "Quantify" =) I'm so happy for you guys!
@lilmzvicki
@lilmzvicki 4 жыл бұрын
I've been watching for about 3-4 years now and almost every single vlog always used to contain a coughing fit. I always felt so bad seeing you like that, you are such a freaking trooper. Peter being your caregiver, he's just simply amazing in being your rock. I love that your quality of life is so much better and your not in survival mode anymore! So happy for you guys! Keep fighting the good fight and keep enjoying the simple things! :)
@thefreylife
@thefreylife 4 жыл бұрын
Thanks so much Victoria!
@betterwiththeirish
@betterwiththeirish 4 жыл бұрын
I’m so ecstatic this works for you! You can really see a huge difference just watching your videos. Even your voice has changed!
@thefreylife
@thefreylife 4 жыл бұрын
Thanks Better With The Irish!
@lattymom1
@lattymom1 4 жыл бұрын
Sometimes in the past, hubby would be hearing Mary coughing in the background and he would say "That poor girl". He was literally beaming when I updated him on your present condition. This is one of those scenarios that make my world a little better. Thanks for your videos.. You guys are the greatest. Love from Northern Canada.
@thefreylife
@thefreylife 4 жыл бұрын
Awe thank you susan, you two are so sweet! :)
@mrs.deschain8436
@mrs.deschain8436 4 жыл бұрын
Hi you guys! Greetings from Germany! I'm a 31 year old mother of two boys with CF (6 and nearly 2 years old - both diagnosed within the first two months of life). Since I have heard of Trikafta and the amazing study results and of course of the successful approval in the US I am absolutely keen on reading and finding any kind of news about this drug. The latest developments feels for us parents a little bit as an early x-mas gift and so we have lots of hopes for the next maybe one or two years (whether it would be approved here in Europe or especially Germany, too). This is something I dreamed of for my kids from the very first beginning. Thanx a lot for your reports and I wish you all but the best for your further future!!
@k.elh.8097
@k.elh.8097 4 жыл бұрын
Hey, ich hoffe für Sie, ihre Kinder und alle anderen Patienten mit Mukoviszidose in Deutschland, das dieses Medikament möglichst schnell anerkannt und nutzbar wird. Grüße von einer Ergotherapeutin auf Frankfurt a. M.
@mrs.deschain8436
@mrs.deschain8436 4 жыл бұрын
@@k.elh.8097 Dankeschön. Ja, möchten einfach auf Etwas hoffen, dass uns zumindest eine enorme Erleichterung im ganzen (Therapie-)Alltag verspricht. 🙏
@GEOMETRICINK
@GEOMETRICINK 4 жыл бұрын
Ive been extremely busy so haven’t seen a single upload from this channel in months and I AM SHOCKED BY HER IMPROVEMENT. Literally shocked. This was on my recommended and after watching a few seconds I had to double check that this was the same person I had watched a year ago. Her voice, energy, color, everything about her is different. She looks like a completely different person honestly. For example, at 5:50, I’ve never heard her spontaneously uproariously laugh like that with especially with no coughing afterwards. Her speech and mannerisms were always very measured and muted. That laugh was amazing. So happy for you!!!
@9MMina
@9MMina 4 жыл бұрын
Been following your journey every day since late 2014, and seeing your health improve so incredibly much after deteriorating so fast too makes me so happy. You keep going girl, there's nothing you can't do. Love from Finland
@thefreylife
@thefreylife 4 жыл бұрын
Thanks so much 9MMina!
@sorchakirby8904
@sorchakirby8904 4 жыл бұрын
Today is a good day💜 I have just been approved for trikafta on the my access program (here in my country it is not available yet)....I'm so grateful and cannot wait to start x So glad it has helped you Mary 💜
@ilonamollema6467
@ilonamollema6467 4 жыл бұрын
I'm so happy for you! Hope you can start soon with it! And I'll pray it will help you as well as it did for Mary. 🙏🏻
@cindywisdom6385
@cindywisdom6385 4 жыл бұрын
Yay. It's appears to be an AWESOME help to your quality of life.
@sorchakirby8904
@sorchakirby8904 4 жыл бұрын
Thank you so much! I cannot wait to see where it takes me and if it helps just a fraction of the way it has helped Mary then I will be so grateful!! We have been talking about lung transplant for the past year but we were just holding out for this day and it is finally here! At only 16 I cannot believe my luck :)
@thefreylife
@thefreylife 4 жыл бұрын
Sorcha Kirby that's so exciting!!
@paulabublewicz7925
@paulabublewicz7925 4 жыл бұрын
Mary you even LOOK healthier!❤️
@mommysaver71
@mommysaver71 4 жыл бұрын
Completely off topic but what temperature was your house when you filmed this? Mary has a thin short sleeve shirt on and Peter has an undershirt, long sleeve button up shirt and a coat on top😂 No but seriously....so glad to see how well you are doing. We all saw an immediate change in your energy, coughing and less raspy voice due to less mucus and coughing. So happy that this drug is now available to other CF patients now too💕
@rhianonanniemcdowell7369
@rhianonanniemcdowell7369 4 жыл бұрын
I wish my friend Danielle could have lived long enough to see this happen! She was the spokesperson for Sick Kids Toronto and with all of her good deeds, she deserved a treatment like this! I'm so happy that we are seeing developments and more steps towards a cure!
@AlixxMarieee
@AlixxMarieee 4 жыл бұрын
i just started it!!💜💜 i'm sorry glad it's helped you. i hope it helps me as well.🥰 i usually have all the weird side effects from medications as well lol! you're & peter stay in my prayers🥰🥰
@katiekate4992
@katiekate4992 4 жыл бұрын
Love your name! @saltycyster
@ilonamollema6467
@ilonamollema6467 4 жыл бұрын
I'll pray that it will help you just as well as it did for Mary!🙏🏻
@cindywisdom6385
@cindywisdom6385 4 жыл бұрын
I pray you are helped like Mary.
@taradaycatalortaraifyourno8482
@taradaycatalortaraifyourno8482 4 жыл бұрын
Prayers it does great things for you.
@I_am_Knowledge
@I_am_Knowledge 4 жыл бұрын
Love you @saltycyster! Really hope the meds work 🙏🏽💖
@christytubbs3266
@christytubbs3266 4 жыл бұрын
I'm a dedicated follower and I've noticed a significant change of improvement. Mary's energy, voice, and doing more in her daily life is amazing. So happy for you!!💜💜💜💜
@thefreylife
@thefreylife 4 жыл бұрын
Thanks Christy!
@Chartingthefall
@Chartingthefall 4 жыл бұрын
When she said "I am 30 years old" I nearly lost my shit. She legit looks so young. Good genes, aside from the CF. So happy this is working for people with CF.
@lottejohnson250
@lottejohnson250 4 жыл бұрын
Same here! I jumped back, genuinely thought she was like 20. Not in a bad way, just shes one of those immortals!!
@Neophema
@Neophema 4 жыл бұрын
@@lottejohnson250 Her facial maturity says otherwise. I wasn't surprised when she said it, but I was surprised when I read your comments. :p
@BellaDiLo317
@BellaDiLo317 4 жыл бұрын
Your voice sounds so much stronger and you seem so vibrant. I'm so happy that you're feeling great.
@merandasue5699
@merandasue5699 4 жыл бұрын
Hormonal changes: I am glad you are bringing awareness to this side effect. Women’s health and mood changes have been plaguing many women in our community on Vertex combo therapies.
@laurentupper
@laurentupper 4 жыл бұрын
Agreed! I didn't tolerate Orkambi because of this very reason.
@fevertree1957
@fevertree1957 4 жыл бұрын
You look just incredible - I see SUCH a difference - you LOOK all-round healthier & you seem to have gained a little weight - your voice is so much better, your energy levels are very obviously better. I had 6 months of coughing constantly before being diagnosed with asthma - it wiped me out totally - constantly exhausted. So very happy for you - wonderful progress..! Love from Scotland.
@thefreylife
@thefreylife 4 жыл бұрын
Thank you Kathleen! :)
@krisfightingfibromyalgia3099
@krisfightingfibromyalgia3099 4 жыл бұрын
I mean we don’t know each other personal, but I am so thrilled about all the good that happens with this med. everyday I see Mary better than before is so ... amazing. Sending lots of love guys. 💚
@thefreylife
@thefreylife 4 жыл бұрын
Kris thank you so much for joining in our excitement!! :)
@wolfsrule100
@wolfsrule100 4 жыл бұрын
It makes me so happy for you! Watching you on this journey reminds me so much of when I started Orkambi four years ago. In the next few months I’ll be leaving Orkambi behind and switching to Trikafta.
@thefreylife
@thefreylife 4 жыл бұрын
Thanks wolfsrule100 and yay that's so exciting!!
@krystalcharlie2192
@krystalcharlie2192 4 жыл бұрын
Her voice even sounds clearer! So happy for you! 😊❤
@brendabaum6442
@brendabaum6442 4 жыл бұрын
As a retired special education teacher, I was in college in the years 1978-1983. Children with CF were expected to live age 10- 12 years old. It’s AMAZING how research has helped you and the CF world! I’m thankful that the Lord has kept you Mary healthy enough and able to benefit! You look and sound healthier!
@Yunniex7
@Yunniex7 4 жыл бұрын
Just by your voice, I can tell it's working!
@donnaloveall1470
@donnaloveall1470 4 жыл бұрын
It’s like a day and night difference, so happy for you. God is good! 🙏♥️
@thefreylife
@thefreylife 4 жыл бұрын
God is good! :)
@emilykrieger6272
@emilykrieger6272 4 жыл бұрын
Donna loveall scientists / researchers that developed the drug are good too!
@penelopepolinsneemeyer4757
@penelopepolinsneemeyer4757 4 жыл бұрын
What an amazing journey, guys. Trikafta truly is a miracle medication for those CF patients who can benefit from it xxxxxxxxx
@LovesChristOnly
@LovesChristOnly 4 жыл бұрын
My 9 year old son has type 1 diabetes... I can not WAIT until he gets ground breaking news too. I know it’s coming!! Yay!
@emilymoore3569
@emilymoore3569 4 жыл бұрын
I have been hanging around on your journey for the past 3 years or so and it has been an incredible to see the change this medication has done for your body. There were days you didn’t leave the bed and now you almost can’t stay still! I love it and i am so thankful they can make medications like this to help the quality of life for someone with such a disease like CF. I pray this medicine continues to do great things for you and many others ❤️
@thefreylife
@thefreylife 4 жыл бұрын
Thank you Emily!!
@brielleanyez7113
@brielleanyez7113 3 жыл бұрын
Hes beaming because he knows hes going to have you for a long time. That man loves you completely, adorable 🤗♥️
@marthajanethvidea-vega1532
@marthajanethvidea-vega1532 4 жыл бұрын
The other day a video was suggested for me to watch. It was about a CF patient that has liver disease and doesn't think she can take the triple combo. What was amazing and so beautiful to me was the amount of messages that suggested to her to reach out to you. I hope she did/does. You truly are an inspiration to so many. Bless you always.
@lyndadenford6292
@lyndadenford6292 4 жыл бұрын
I couldn’t be more pleased for you, these are amazing changes, regular Frey family that have followed you for years can see the difference, wow! Xx
@debbieschlemmer2746
@debbieschlemmer2746 4 жыл бұрын
this certainly makes me smile. :-) with this precious gift God has given, I am so happy that you are feeling so much better Mary, this is such a blessing. Sending my love and hugs to the three of you, see you tomorrow!
@PinkHawk191
@PinkHawk191 4 жыл бұрын
I am so happy for you Mary! I started a new medication called Fasenra for severe asthma. My lungs are clearer. It’s a wonderful medication for me. My quality of life is better. I am so grateful for my respiratory doctor fighting my insurance for this medication. I have been on it for 9 months. So far so good!
@rheagalarneau1366
@rheagalarneau1366 4 жыл бұрын
Sometimes miracles happen. I see the change in you. I’m honestly amazed how much the triple combo has done for you.
@thefreylife
@thefreylife 4 жыл бұрын
Thanks Rhea Galarneau! :)
@mimimi4098
@mimimi4098 4 жыл бұрын
hi guys!! I cant express how happy I am for you!! about this new med, this med is helping so many people, including myself! Im 14, and I also have the delta f508, and ive just completed my first week of trikafta, and its been absolutely amazing! soooooo much less mucus 😊 hope everything keeps going smoothly for you. You've been such an inspiration for me with such a positive attitude ❤
@julesvibe
@julesvibe 4 жыл бұрын
What I meant to say is...watching a miracle is such a blessing.
@MJ_Hershey
@MJ_Hershey 4 жыл бұрын
Your voice is so clear and you are not pausing to catch your breath!! I can tell your energy is up too and your face is fuller. :) so so happy for you.
@thefreylife
@thefreylife 4 жыл бұрын
Thanks Mollie! :)
@julesvibe
@julesvibe 4 жыл бұрын
It’s quite incredible to be watching your life change on a medicine that’s history making. So thrilled for you.
@thefreylife
@thefreylife 4 жыл бұрын
Thank you Julie!
@12Judah
@12Judah 4 жыл бұрын
I’m so happy Trikafta is working so well for you! I should be getting on it within the next few weeks and I’m so freaking excited!!! My mutations are DeltaF508 and G551D. I’ve been on Kalydeco since 2012, and I truly believe that drug has kept me from needing a lung transplant. I used to have to go in the hospital 1-2 times a year, and now I haven’t had to go into the hospital for a CF exacerbation in almost 5 years! My lungs haven’t been feeling very well for several months now, so I think I’m gonna need a tune-up very soon, but I’m okay with that.
@snowfuca
@snowfuca 4 жыл бұрын
WOW WOW WOW, i watched you guys... but some time ago i took a brake and i kinda forgot about this channel. Now i see on sci-show Hank speaking about this wonder drug and i instantly remember about you. I dropped my fingers on keyboard and typed my way back here ... Hearing you speaking now almost shocked me. I am very happy about you and keep smile on the sky :). Take an trip to some mountain where the air is clean and breatheble :)
@thefreylife
@thefreylife 4 жыл бұрын
Thank you!!
@niamhandbonnie
@niamhandbonnie 4 жыл бұрын
I stumbled across your channel again after being an avid watcher but having not watched in a good few months, and even just you speaking at the start of the episode it’s clear to hear that you are doing better! I am so happy for you
@Sunshinetropics
@Sunshinetropics 4 жыл бұрын
I haven't watched for a while and can hear the difference in Mary's voice. This is so uplifting. I am happy to see the difference in Mary that I wanted to see when I clicked on the video. I hope for the best for you.
@jbaux84
@jbaux84 4 жыл бұрын
As a long-time viewer (Scotland), it has been so awesome to see the journey since beginning the triple. And I had been wondering about needing iv’s. You guys are amazing!! Happy for this new journey of health in y’alls lives.
@lezup
@lezup 4 жыл бұрын
Love to see you doing great on a new medication. I can’t believe the jump in function. Less mucus is amazing too.
@eswepston
@eswepston 4 жыл бұрын
Can not hit the like button enough! I've been watching your journey for the past 3 years. I'm cooking dinner right now and just can't stop smiling and thanking the Lord for this drug and the improvements you're seeing!
@ihndz9824
@ihndz9824 4 жыл бұрын
Mary you look so well, is like a 350° degree turn for the better, congratulations and may the Lord keep blessing you with good health and a bright future. You and Peter are such a great couple and deserve a little break from all the medical issues that you have been dealing with for years. Love you guys, keep it going im a fan for years to come. Happy Holidays to you and your families.
@jj4christ
@jj4christ 4 жыл бұрын
Been with you guys since 2015 and it is so beautiful to see you doing so well. Keeping up prayers for you and please pray for me.
@thefreylife
@thefreylife 4 жыл бұрын
Thank you Janelle! Praying for you!
@alliesong77
@alliesong77 4 жыл бұрын
I have epilepsy and the I went through an adjustment when I found the right medication. Once my body got used to the medication, the side effects calmed down and things got better over time and I gained so much quality of life. I still manage the side effects, but it's like Peter said, the quality of life gained is SO worth it for the side effects, at least in my case. Very happy for you Mary, you guys are the best
@thefreylife
@thefreylife 4 жыл бұрын
Thanks alliesong77! And I'm so glad you also found a medication that works well for you! :)
@patricialynnmoore
@patricialynnmoore 4 жыл бұрын
I too have epilepsy. I somewhat denied it for a very long time, thinking it was just a quirk that happened, until I didn't take the medication for 3 days. I was found in a post-lictal state, the period that follows after a seizure, by my daughter 5 months ago. I never wanted to give into this diagnosis or give it a name because I didn't want a lifetime of medicine and sigma that comes with it. Now with this new hope for CF'ers there seems like there is a real hope with epilepsy too. 🙏🙏♥️
@monicalauber2934
@monicalauber2934 4 жыл бұрын
We can see very clearly that something has changed for the better! You seem to have more energy, even you voice is different...I would say it is kind of stronger!!! That is amazing, Mary!!!😀😀
@halarahnjunk
@halarahnjunk 4 жыл бұрын
im on day 5 and i feel amazing. i felt so much better after day 2. with symdeko it took me about 7-8 months to really start seeing results. this med is such a game changer!!
@ilonamollema6467
@ilonamollema6467 4 жыл бұрын
I'm so happy for you! I'll pray that your health keeps improving!🙏🏻
@thefreylife
@thefreylife 4 жыл бұрын
H M Yay!!
@jodeming5088
@jodeming5088 4 жыл бұрын
What a beautiful miracle. Watching you before the med and after totally miraculous.
@jessicah3450
@jessicah3450 4 жыл бұрын
This is so exciting, Mary! You have your spunk and more color back.
@rachelmum2500
@rachelmum2500 4 жыл бұрын
Wow Mary you even look different, you look HEALTHY! Now I know you are still sick but what a big change. I'm so happy for you and prayers it keeps going up from here! God bless ❤️🙏
@thefreylife
@thefreylife 4 жыл бұрын
Thank you Rachel! :)
@rachelmum2500
@rachelmum2500 4 жыл бұрын
@@thefreylife you are very welcome sweetheart 💙
@michellehamilton1132
@michellehamilton1132 4 жыл бұрын
so thankful that you have benefitted from this new med! Praying for more benefits in the future.
@thefreylife
@thefreylife 4 жыл бұрын
Thank you Michelle! :)
@ColleenBeautyAndMore
@ColleenBeautyAndMore 4 жыл бұрын
I'm so happy for you Mary! Also, to all the people starting Trikafta.. Good luck and I hope it helps you. 😊 I'm sending all my love, prayers, and positive energy to you. ♥️
@SierraGal
@SierraGal 4 жыл бұрын
What I see, from the way outside, is the hope for the future in your eyes. 💑
@Traderof4
@Traderof4 4 жыл бұрын
I am so happy to see you post. I am glad you are doing better. Please continue to post more.
@LisaCorneliusJourneys
@LisaCorneliusJourneys 4 жыл бұрын
I'm so grateful you are able to utter the phrase "exceeds our wildest dreams!" That right there is worth celebrating!!
@Parsnippy82
@Parsnippy82 4 жыл бұрын
Still cannot get over your amazing voice change. PLEASE sing to us in the near future.
@nicoleskorupsky1007
@nicoleskorupsky1007 4 жыл бұрын
Great to see that it’s working! I did a project on CF and its amazing how much medicine has improved over the years
@wendyturner542
@wendyturner542 4 жыл бұрын
Awesome! Love to hear medical advancements. Glad it’s working for you.
@lisai176
@lisai176 4 жыл бұрын
You two continue to inspire me in ways you will never know . I got my HER FIGHT MY FIGHT shirt today. My favorite shirt of my Frey Life collection, hands down. Thank you for all you do. Thank you for opening your hearts and helping us understand what your day to day life is like so we can better understand, help others, and be more knowledgeable.
@thefreylife
@thefreylife 4 жыл бұрын
Lisa Michelle Irwin I'm so glad you got your shirt! :) Keep on pressing on!
@katelynnelson2287
@katelynnelson2287 4 жыл бұрын
Mary, I haven’t watched a vlog since before the summer. You look and sound amazing!! Your skin and hair looks beautiful and your voice sounds clearer. Listening to you both talk about how much your body has changed and the quality of life change is awesome!!! 💕💕
@deborahratliff5109
@deborahratliff5109 4 жыл бұрын
So very happy for the benefits of this medication! Your fami!y is a joy to watch and feel a part of. Thank you!
@lynnrose7562
@lynnrose7562 4 жыл бұрын
The improvement in the quality of your life is obvious. You sound stronger. One example I see, is that you were able to work hard packing all those boxes. Good for you. xo
@chroniclyfekb8342
@chroniclyfekb8342 4 жыл бұрын
Mary I have been so glad to have watch the transformation in your life from before the triple combo (Trikafta) till now. It has been miraculous and your journey and testimony is amazing. Though I don’t have CF but have different Illnesses your walk in each day and season gives me hope. Along with my faith in God. 🙏🏻❤️
@thefreylife
@thefreylife 4 жыл бұрын
Thanks ChronicLyfe KB and keep on pressing on, you've got this! :)
@audreybsitter9094
@audreybsitter9094 4 жыл бұрын
I haven’t watched y’all in a while! But Mary you sound so much better!!! I’m so glad Trikafta is working for you!
@JustmeNici
@JustmeNici 4 жыл бұрын
Honestly, you look so much better, I can see that you have more energy and generally feel better, even despite the small side effects
@whitec1981
@whitec1981 4 жыл бұрын
I’ve been watching since Mary left Scotland and man oh man I’m sitting here crying tears of happiness for her and you both as you continue to journey through life.
@thefreylife
@thefreylife 4 жыл бұрын
Awe thank you C Harris for joining in our excitement! :)
@sakamotothecat17
@sakamotothecat17 4 жыл бұрын
@@thefreylife are you from Scotland?
@susanharris1285
@susanharris1285 4 жыл бұрын
I remember when you were having bad days and an so glad you can enjoy a some what life with Peter Ollie and still doing so much better , you look like you feel better love you all hugs prayers always
@thefreylife
@thefreylife 4 жыл бұрын
Thanks Susan! :)
@BlizzardGhost
@BlizzardGhost 4 жыл бұрын
Mary you're glowing and you sound so so good. I'm so happy for you!
@terrigrainger8305
@terrigrainger8305 4 жыл бұрын
Definitely there is a huge difference in how you sound. I’m so happy you are able to live life a little easier. God is great! ❤️
@thefreylife
@thefreylife 4 жыл бұрын
Thank you Terri! :)
@amyblaine7624
@amyblaine7624 4 жыл бұрын
You look so vibrant!! Your voice sounds wonderful too! I couldn’t be more happy for you❤️❤️
@Keepinitreal55
@Keepinitreal55 4 жыл бұрын
I feel so sad that Claire didn’t live a little bit longer to see this medication :(
@rmjames83
@rmjames83 4 жыл бұрын
I wonder...if ur body will produce less & less mucous over time (ie cumulatively less)? If that happens, I also wonder if those antibiotic resistant bugs will then have no place to live in ur lungs (& be eradicated), &/or ur immune system may have a chance at eradicating those bugs? I know potentially a bit of a pipe dream, a “wacky” theory, but my mind has been going there, with u having such an incredible response!!! It’s beautiful to see how much more u “Trikafta can” these days! Just INCREDIBLE!! I’m SO unbelievably happy for u both!! I know u & others are SO thankful for Trikafta+their brilliant, wonderful & incredible responses to it-but I hope & pray this disease modifier is “just the beginning”-that a CURE is on the horizon & not long away!!!
@kendrawoolhouse1613
@kendrawoolhouse1613 4 жыл бұрын
Omggg... I haven’t watched in over 3 months and I then I saw this video and I’m literally freaking out because you sound SO MUCH BETTER
@ank7439
@ank7439 4 жыл бұрын
Haven't watched I awhile since I haven't been on KZbin too much. You sound and look so different. Almost like a different person. Prayers for the best for you both
@trishab2147
@trishab2147 4 жыл бұрын
They have a new mic
@CaliPortillo
@CaliPortillo 4 жыл бұрын
Yay! New Medication is working for you! You seem a lot more energetic and seem to keep on a healthy weight. Keep on working! And Do what you think you can't do!
@earthandfire4840
@earthandfire4840 4 жыл бұрын
I used to watch you guys years ago and I honestly dont know why I stopped. I love how Peter talks and sits with you with such empathy, its making me tear up to think about it, he is seriously right in your journey with you and that is something so beautiful.
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