12 DAY UPDATE ON VERTEX TRIPLE COMBO MEDICATION! 🏥
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- Опубліковано 7 вер 2024
- We are so thankful for the improvements we have already seen in the first two weeks of being on this new experimental Genetic Modifier!
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Our minds are blown! Check out our 12 day update!
The Frey Life I’m crying as I watch you my sweet Mary! I love you so very much. So glad to be on this journey with you both. I’m not eligible for this drug as I do not have F508del copy. But I am so hopeful for all our futures. With God’s grace we will see CF be a treatable disease that never takes another child from their mothers. 💜✝️💜✝️💜✝️
brilliant news and hopefully only just the start.Onwards and upwards
The Frey Life woop woop, crying happy tears ❤️ praying that it continues 🙏
I'm praying you won't need antibiotics as often and that fewer antibiotics may offset your liver handling the Vertex way much better! I'm so excited for you! Hope Oliver's limp is better too!
Omygosh I am so happy for you Mary. I cried through the video again. Lol. Love you three! ♥️
I’m lying here in my bed crying for you. There is no other person I know who deserves this more. I pray your liver can handle this. Gods mercy and blessings surround you both today and always.
I love how overjoyed Peter looks throughout this video. The love he has for Mary is incredible.
Yeah for Vertex!!!
I KNOW..RIGHT❤❤❤❤
Your voice is much stronger and you don't seem nearly as short of breath. Hoping the best!
Coughing is a none factor in this video at all too
I love how you guys use the term “we” and “our” referring to how you’re feeling and regarding your CF. Unfortunately, at the end of the day, the physical symptoms and effects are all on Mary, but it seems like Peter always helps you take on the emotions of this disease. You guys seem so in sync and seem to have such great communication that he always knows where you’re at. You are both in the fight together and it’s awesome how Peter can chime in (especially if you’re coughing) and help you get the words out! Y’all are amazing and it’s definitely not a coincidence that you two ended up together! 💓 Much love & positive vibes your way!
"This medication.... works"
Man, Spring 2020 couldnt come any sooner. Im so pumped
You seem a lot better!! Yay!! I hope it gets better everyday🙏🏻🙏🏻. “Ollie alert” I read that people should not allow their dogs to swim in any lakes, ponds, rivers etc, that have green algae, as it is fatal to the dogs!! Please keep our Ollie away, and consult your vet to see if she has heard about this
Gosh, this sounded like a 'fake news' sort of thing that was maybe making the rounds, but I did a quick google and this is really true!
@@OhSoUnicornly , it so very true! 👍
OhSoUnicornly it was being discussed on the news and even recommended owners should wear gloves when washing it off dogs should they need too. It can be transmitted to people via skin.
@@carolv8450 if a dog comes in contact with blue green algae they will die within that same day, and there is no treatment.
Love how you are cautiously optimistic. Intellectually realistic.
This is the BEST way to be with this kind of stuff. They are great
OMG, amazing to see you talk without coughing for a whole conversation! It must be an amazing feeling for you. Blessings for continued relief.
Praise Jesus! I knew you started feeling better like right away, well seemed to me from your videos.
It's crazy how people who are handed the most unfortunate life situations can be the most positive and grateful people, I've never seen more positive, optimistic, and just stubbornly happy people than Mary and Peter even with health challenges and decline, it's astounding to me and so inspiring for all of us I think
You deserve this! So happy for you two!!!
Also I've heard that blood sugar drops improve over time on Vertex so I'm hopeful that'll improve
I'm on a medication that reduces the amount of mucus my lungs produce and it's been so much better. I haven't had to be hospitalized or a bad case of bronchitis since. I hope you're able to stay on it. 👋😀
My daughter is 7 almost 8. She’s on the list for the 6 year and older study, for this medication! We have come so far!! ❤️👏🏻💪🏻 I will pray for great news, from your blood work! That you can continue to keep taking this medication! To see how much, it has already begun to help you is such a blessing!
This new triple combo is truly a miracle! I am in the study and although I cannot say much, I will say it has changed my life. I have never felt so healthy. So happy to hear it is working for you also!
You have appeared to be much much more energetic since the meds started, and if you measure how long you can talk without taking a breath, it’s sooooo much longer--very noticeable!!!! That was something that worried me in the last few months-so many more breathing pauses when you talked. This is fantastic!!!!
So happy for you!! I have an autoimmune disease and am on a biologic drug and after years of misery, within 2 weeks I was a million% better. Amazing!!!
Can you please share what the biologic is? I have hashimotos, arthritis that is trying to turn into RA like my father had. I also have CFS, PMDD and possibly lupus. I need to.find a rheumatologist that truly cares.. 😔 super frustrated. My QUALITY of life for the last 5 years is non existent. I'm 35 yet been sick since I was 11 amd with family I feel like a burden lots of days because I'm not the mom, wife and daughter I know I could be if I were not so ill. I'm now having a scare with some bowel issues that I pray are not the worse case, but I'm trying to hold tight to prayer and understand God's plan. Prayers to you and praise to your feeling better. ♥️🙏♥️🙏
Hashimoto's thyroiditis here!
I have psoriasis and take Siliq.
Lee Lu me too its horrible 😢
So glad it is working for you. Such an amazing update. I am still praying for you.
Thank you Courtney!
You get this opportunity because you have cared so well for your body. Kudos! I feel sure there will be other breakthroughs for you and yout CF community around the corner. Many years ago, in the 70s, I had a child in my class who had CF. There was little to help her then, as I’m sure you know. It was very hard to watch her struggle through the days she was able to come to school. You’re here at the right time. I hold you and Peter in my heart.
P.S. Oliver is tied with my dog for Cutest Dog Ever Born. I love his curly fur, melting eyes, and giant nose. He has perfected the “nose down, eyes up” puppydog eyes, hasn’t he? 💕💕💕 for your family of three.
Haha! Everyone has the cutest dog!
Mary this is amazing you need to watch this video again, you had full conversations with us and no coughing, you laughed and no coughing what a blessing this is for you both, I pray that this will continue for you, even Peter looks more at ease you are so right it is worth it just to hear you laugh and talk.....
Great news Mary! You definitely sound better, voice wise. Not raspy any more. So glad it's working!!
These medications are life changers. I was hospitalized for tune ups 2-3 times a year prior to Orkambi. Since 2015 I’ve had IVs 4 times total. And my lung function has been steady for all of those years. It’s an exciting time for the CF community! The best is yet to come!
1 1/2 minutes into the vlog and am crying....with joy for you !
Call me crazy but I've been counting the amount of coughing fits small and large. I've noticed that in a 10 to 15 minute vlog,you cough between 8 to 10 times. Whereas before this drug, I was counting 15 to 20 times give or take a few videos. And yes I do know these videos are edited.
Aundrea Wood Oh I was thinking about that too...I haven't counted but have also noticed it's been less (and like you stated, I also know it's only 15 minutes of their day and that the videos are edited)
So happy for you, Mary! I pray that your liver handles it well because you deserve all the good that is coming to you now!
You didnt cough while you were talking!!!!! I'm soo excited for yall!!! Go Mary!!😘
Wow, that's fantastic, time flies so fast, had no idea it has been 12 whole days. So happy that it seems to be giving you more freedom, here's to praying you can get used to the side effects, sounds like they might be pretty minimal comparatively and here's to praying it keeps working so well. Cheers and God bless.
Thanks Dena for sharing in our excitement with us Dena!
I can honestly say , unless it's all been edited out, that this vlog is the first in quite a while that you have not coughed as much if at all, and that you look like energy isn't being spent on coughing. Now I hope it isn't taken wrong as I know this is just a glimpse, and that vlogs are edited, however you looked great, and I love that Peter looked a touch choked up when you asked if he was crying, and for good reason, if this is just a momentary time where you feel ok, it truely is worth every minute. Love you guys so very much.
So amazing to see and hear the difference. What a huge breakthrough for the CF Community!!! So happy for you!
I’m SO unbelievably excited & happy for u both-I’m sitting here crying tears of joy!! I desperately wanted this to work for ur Mary, & although ur only 12 days in, it appears all our prayers, wishes & dreams for you have been heard! Hallelujah!!!! You are so selfless, courageous & generous Mary-it was about time something positive came your way! I’m praying your liver is managing-& continues to manage long term! Hopefully, this drug will make your lungs a more & more UNFAVOURABLE environment for bugs!!!! (Increasingly over time!!)
I have been following you guys for quite sometime, I just haven't commented yet. I must say, Mary, that you look so much brighter in the face, you have a twinkle in your eyes and you don't seem to have that gasping quite so much or as noticeable. I know someone that's been on this medication for about 4 months and they have had nothing but steady improvement. They announced they felt their improvement about the same amount of time in as you have. I pray for this medications continued success with you and that you continuously feel better and better as the days move on. I have to agree that I think this medicine would be a saving grace to so many CF patients! Continue to hold strong onto your faith and know the Lord will never desert or forsake you! Much love from a friend just a few miles north of you.
this is so amazing to hear mary!!! I could tell you AT LEAST had more energized!!! glad you are seeing results in your symptoms as well
So pleased for you. I thoughts I’d noticed the coughing reducing a bit. Not long ago one sentence was about all you could manage, now full conversations are possible. I’m praying that this medication truly is the game changer the CF community has been waiting for. Much love to you all.
Beyond happy for you and Peter!! You look so good Mary and happy to see you looking good, coughing less and not as short of breath!! Praying for continued progress 🙏🙏
I also want to thank you from bottom of my heart for your positive, inspiring attitude and words as I am having a wonderful time on my vacation which I was so anxious about since my surgeries. Your words gave me the encourage to keep on keeping on !! Wearing my shirt I purchased from your online store, Do What You Think You Can’t Do!! And I’m doing it! Thank you Mary, Peter and of course precious Ollie for allowing us to be part of your journey!! Love you guys ❤️🙏👍
Its so amazing to hear you speaking for such a long time without breaks Mary!
I am so excited with you both as the story is being told! Hopefully it continues to maintain and improve even more 😊💜
Thanks Annette!
The Frey Life I was wondering has anybody ever asked you a gross question regarding your CF?
Mary you talked thru the whole video and only slightly coughed ONCE!!!!!! That’s incredible! I’m so excited to see how you are in a week!!! Hugs to all and prayers!!👍🏻👍🏻❤️❤️❤️
When you said, "this medication works", I cried very, very happy tears. Yay!!!!!!! I am over the moon with happiness that you are doing better. You had a conversation before Mary's vest? Wow, that is wonderful news. I my is full with joy. God bless you both. xo
When you went for transplant evaluation during that week you mentioned feeling dehumanized. It inspired me to write a blog on dehumanization. Thank you!
Good for you! I think it's a really important issue especially for those of us dealing with chronic conditions or any illness. Health staff need to remember we're not just a case, not just that illness but we have lives, things to do, dreams etc too.
@@sorchaoreilly2633 I was unsure about linking it but I can if you'd like to read it.
@@DesMowadeng I would like to read it! :)
@@XK_tyX it's posted in a reply above
I'm so so thankful you've had these improvements! This is such a blessing!! God is so good!! I'm just so happy for you both with all this joy!
Your face shows that you are feeling better. You look stronger and healthier. 🎈🎈🎈❤️❤️❤️
I am so full of joy for you Mary. God will never seize to amaze. I see God’s hands on your life and He is healing and preparing you for bigger things. I am so excited for the both of you and what the future holds. Yah the medicine is working 😊🤗🤗as always lots of blessings and love to you both and Olly.
Praise the Lord for his goodness! I have seen an improvement in your energy level and the amount of coughing. Hoping and praying for the best results with the liver.
I am over the moon to hear how much of an improvement you’re already seeing with the Vertex, Mary cariad. May G-d bless the researchers who have brought this medication so close to FDA approval so that it can help more people living with CF! xxxxxxxxxxxxxxxxx
I’m so happy for you Mary my son has plastic bronchitis and lymphatic material forms cast in his lungs and he has to cough them up he also does the air vest and breathing treatments I sure hope when u get your transplant you are cured of this ! I truly believe Gods got this and you will be fine
Prayers that you get the best blood results ever!!! 🙏🏻 going up for the 3 of you as always!!
Thank you Ann!
This is the first video that I’ve watched that you didn’t cough in. You sound like it’s doing wonders for you. Praying for you and peter and Ollie. I’ve been watching almost from the beginning. You sound wonderful.
We just had our clinic visit on Tuesday and the doctor started the process to get my girls on this medication. It's very expensive. so I'm praying our insurance comes through for us. Thanks for sharing your journey! It's so exciting to imagine the possibilities for the CF community.
It's a miracle, thank God for medical research!
I am so happy for the difference this medication has made for you🤗! I pray you have more days like this to continue 🙏💖🙏💖
God is so good! I've been praying that you would have some relief from your symptoms, and I'm filled with joy to know that the new medication is making a difference. Your glowing faces are a delight to see.
Amazing news!! Praise God! Let the the positive results continue 🤗🤗
You def seem less winded when talking. So glad it’s working for you!!
You really do seem so much better! Your breathing seems so much stronger, and you’ve barely coughed through out this video! I’m so happy for you!
So good to hear! I am on Orkambi from 1 year back. The first month my lungfunction really improved, in Swedish we say 5 deciliter!
I also gained weight and felt much more hoppfull and happy ❤️ I hope this medicine keeps on working for you Mary!!!!
I also wanna tell you Mary! Maybe the bloodsugar is a sign that you can eat more. I was SO hungry during the first time. I dont know! :)
I love that you are being present in this reality right now “it’s worth it”. I need to learn so much from you. So excited!!!!!!
Thank you to you, Mary, and all of the CF community that has participated in these drug trials. you are all making the future a little less scary for Cf patients. Hope is one of the greatest gifts we as humans can experience. To be a bringer of hope must be so magnificent. God bless you all. And Peter and Ollie too!
I really hope this drug continues to work for you! Praying that your liver is stable and you continue to take it. But I love your attitude of being grateful for the relief you had during this time, no matter what the liver results are.
Yay!!! Great news Mary is already feeling some benefit. 😁🥳👏
So happy for you Mary! That is great you are having less coughing! We have an awesome God! 🙌
Amen!
You two compliment each other so much. I’m so thankful you feel some better. Still praying for continue healing, and the great miracle of healing. Mary, you are so deserving of a complete healing. It takes a special person to keep their spirits up, the way that both of you do. My heart is with you. Warm hugs and love. ❤️ Give Ollie, a big hug for me. Praying God, continues with his blessing everyday.
I’m imagining another couple from years back being as excited for what the airway clearance vests can mean for the cf community. Thank God for science and lovely people that make donations to the cf foundation to keep striving and coming up with newer and better medications and devices. We praise you Lord for your provisions. 🙏🏼❤️
Praising God and congratulations on the progress to date!! Seeing the happiness in your faces is amazing.
Mary: "are u crying?"
Peter: "nope"
Me: "I'm crying:")"
Wow, just wow!! Throughout the whole 21 minute video you did not cough one time! How amazing! I am so happy for you and I’m praying that your liver blood work comes back just fine 🤞🏼🤞🏼💜.
Oh Mary, EVERY deep breath you took had me on the verge of tears! And then NO cough during filming... What a blessing for you and Peter ❤️ God bless
Holy crap, I heard of your guys before but tonight's the first time I'm seeing any of your videos, and you can physically see and hear the difference. Wild.
WooHoo!!!!!!
I'm grinning from ear to ear!
My heart is bursting with joy!
I'm wiggling like a happy puppy!
😁😁😁😁😁😁😁😁😁😁😁
I am beyond thrilled for you, Mary! ♥️
The improvement in your quality of life is noticeable from here...I can't imagine how life altering this is from the inside.
Wow!!
Damn, I can't stop smiling!!!
I hope the improvements continue as I work my way forward in your vlogs.
🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻♥️
I'm so happy that this medication has given you some relief! And even if you have to come off of it later you've demonstrated to other CF patients that this CAN work and it CAN provide symptom relief and that is amazing! I'm very very happy for you guys with the new house too! We are currently in the process of buying our first home as well! Best of luck, hopefully your liver is happy! ❤
Mary, I’ve noticed that you don’t cough as much in the vlogs either! Thanking God for every day that passes and there’s less and less mucus!
I can also see a difference in the way you are breathing. I can tell you are taking deeper breaths and seem to be able to vlog longer without coughing. Your skin color is more pink and your lips are also more pink and as before they kept a bluish tint after coughing.I feel like your vlogs have gotten more in depth as well. Either way praise God for this miracle!! God is good, God is great!! Amen
This is the most I've heard Mary talk without a coughing break in a long time. Thos is such a blessing.
So happy for you Mary oh and Peter♥️ Take each day as a blessing and enjoy the journey.♥️
Thanks Petersen!
I'm So happy for you that you're feeling better. 🙏❤
I have hope this will help move CF from a terminal disease to a chronic one that can be managed. This is amazing! I'm happy for you! I can hear it in your voice less winded and stronger. :)
man alive guys - what amazing news!!! I couldn't be happier for you guys - got choked up a couple of times through this video. Praise God for this sweet and abundant mercy!!!!!
I'm thankful on your behalf. I'm thankful for all of the scientists that devote their lives to research. My daughter is in remission from lymphoma and if it weren't for the scientists that study these diseases, I'm not sure where we would be. I'm afraid to even think about it. I'm so happy to see you excited about the improvement you are making. Much love from Seattle
Wow!! I can’t believe the excitement in your eyes and voice - and Peter’s as well. My stomach has butterflies just watching you two. Like you, I have been waiting so many years for a treatment that will help me get my life back. Watching you express this life changing moment is so incredibly satisfying to watch and has renewed my hope that there is a drug on its way that will improve my quality of life. Congratulations Mary enjoy every new non-coughing moment that this amazing medicine affords you. Celebrate!! 💜
Oh my gosh MARY AND PETER! You can even hear in the vid that your breathing sounds clearer and easier. This has literally made me week watching this!!! I am so so pleased the vertex meds are helping you Mary❤️❤️❤️ I hope that this continues to make improvements for you or at least halts it your ling function from getting poorer.
Sending so much love.xx
Thanks for sharing your journey with us. It has been very educational to hear what you’ve been going through, and I hope the Vertex continues to improve your CF symptoms! God bless you both!
This is wonderful news!! I hope your labs are 100% perfect.. 🙏🙏
I'm so happy for you, Mary! You deserve a breakthrough!!! God is so amazing, he works through man as well!
Mary, I am crying tears of joy for you! I am so so thrilled for you! I'm praying your blood work comes back showing you can continue with the medication. You deserve this more than anything💜
Peter may not be tearing up but I absolutely am. As someone with kidney failure and on dialysis, I know how precious good days are and how grateful I am for them. I pray you have continued good results with increasingly better days ❤️
Mary you’ve been sounding better, looking brighter and noticeably coughing less in videos. Peter, the joy and love on you face is such a precious picture of love, joy and gratitude. HalleluYah! 🙌 Praying blood work looked great and you can get maximum benefit from this drug. Ollie you are as adorable and sweet as alwsys❣️😊💙💜❤️💙💜❤️💙💜❤️
Look at Ollie just resting his head in the back 💗💗💗 SO HAPPY FOR YOU GUYS 💗💗💗
Wow. I can hear the difference. It's PHENOMENAL!!! I'm so happy for you!!!
I also have bipolar and understand completely about meds working or not working. I really wish you guys all the good someone can wish -I hope this new drug will help you
I can hear it in your voice; it's more steady and stronger. You seem less out or breath. I'm so glad for you!
This is one of the most wonderful videos I have ever seen. It's both really interesting to see how the drug works and incredibly relieving to see that it appears to help you. I'll pray that your liver is doing okay and that this medication works for you. Thank you for sharing all this with us.
I can sense Mary's giddiness. I am so happy for you both.
The last few vlogs it has been very apparent that you are doing better. I hope you continue to benefit from this drug and have many more weeks like this last one. You sure deserve it. Thanks for the update and all the joy that you two bring into my life and many others lives as well. ❤️
Mary you and Peter both sound so pleased with how the medication is helping you in your daily life. God is good. Praying that your test results will be good and you can continue to take the triple medication and see even more improvements with your health.
I am so happy and excited for you Mary! I thank God for the relief you have been able to enjoy.
This makes us all happy to see you feeling better. You deserve it. Hope it continues.
Are you crying Peter? - No!
But, I am watching this!!! What a beautiful blessing & praying your blood work is stable.
Literally crying. This is such a blessing and no one is more deserving than you
Crying tears of joy for you and praying that you can continue!!!
Mary, I’m so very grateful for your improvement. Praise be to God for this measure of success! Also wanted to say how much your voice seems to be recovering. You sound so much like you did several years ago with much less hoarseness and breathiness.
Will continue to pray it will get better and better, that your liver will handle it fine and that you'll be able to stay on it long term! ❤️💜
Omg I started crying when I heard this!! The joy in your voices and the smiles on your faces tell so much! So thankful for this drug! One more step toward a cure for CF!