ONE YEAR ON TRIKAFTA | TRIKAFTAVERSARY!
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- Опубліковано 1 жов 2024
- Vlog 8.3.20 → It's hard to believe its been a year. We are grateful and speachless!
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Just. So. Thankful. That’s all I’ve got.
This is such an awesome milestone, I'm so happy for the incredible results!
Just been approved in Scotland today 🙌 so excited 🥳🥳🥳xx
Congratulations on 1year on Trikafta.
They calling it Kaftrio so used to hearing you say Trikafta going to take a bit of getting used to!🤣
I feel emotional watching Mary get emotional it's truly amazing to see how much your health has improved and that has allowed you to enjoy life more it's a blessing for you both 🙏😁
Trikafta just been approved in Scotland today, so excited!!🥳🥳🥳xx
@@tillyramus thank you so much 💖
Shona Mackay I pray it helps everyone in Scotland that has CF
That is wonderful news! Many Blessings go out to our Scottish family may all your dreams come true.💜💜💜🙏🙏🙏🙏
@@anngabriel5455 thank you so much 💓 💖
@@rae1957tn thank you so much 💓 💖
You have changed so much.... you had so many hospital admissions and I used to be willing you on to get home. When transplant came up I was seriously worried. You have so much joy in your days - you give hope to so many xoxo
Thank you Debbie, we are so grateful that you have bene with us through the hard times & the Trikafta times :)
My fiance has been on it since the beginning of the year, and its incredible! She rarely coughs anymore (which is how we used to be able to find her in grocery stores) and her lung function is up to 75%! Aside from her needing her gallbladder taken out (due to a side effect of Trikafta we believe), she hasn't needed a hospital stay due to her CF! 2020 has been so hard for a lot of people, but with her being approved for Trikafta and our wedding this coming October, its been a wonder year for our family. Trikafta is a true wonder... So glad you guys are still going strong! Congratulations 👏
D Lee Draws that is such amazing news! I'm SO glad that she is doing so well on Trikafta (apart from the gallbladder surgery)! Thank you for celebrating with us, and know we are cheering you guys on as well! :)
Birthday month and one full year on Trikafta recap. Can this get anymore emotional? I am so very happy for you Mary, amazing drug for amazing people. Keep smiling!!
Vlog recap is simple 🎉1️⃣🎆👋
Thank you Jon!
I hope the people that worked on making this drug see this video! So happy for your success on this medication!
I remember when you could hardly do a load of laundry. AND, you just went through a 20+ minute vlog, without one cough. It’s truly a miracle.
Carolyn isn't it incredible?! Thank you so much for celebrating with us! :)
I celebrate my Cancerversary...the date my doctors told me that I was considered NED...no evidence of disease. July 13th was my 3rd cancerversary.💗
Congratulations! July 13th was both my grandmother's and my dad's birthday. Great day for a cancerversary!
Y'alls hearts are so sweet, genuine, and reflective of God's love, hope, and peace. You encourage me to pursue God more and more in my daily life♡♡♡
Thank you Milly for those kind words & for sharing that, we are so honored to be God's hands and feet, and so grateful for the opportunities to encourage you towards Him 💕
Happy first trikafta anniversary Mary and Peter! Wishing you many more years of blessings and good health 😊 ps tomorrow will be my first year kidney transplant anniversary. I’m so grateful towards my donor. It’s really life changing! Stay blessed 🙏🏻
Congrats on your one year!🤗
@Brynne Jewell thank you so much 😊
It honestly makes me tear up seeing how this drug has impacted you Mary. You've come so far you're amazing 😊❤
Me too. So grateful on her behalf!
Thank you Queen Bea!
Your voice sounds so much different, less raspy, more powerful! It's amazing! And you look so much stronger and healthier omg
“Now to him who is able to do immeasurably more than all we ask or think, according to His power that is at work within us to Him be the glory in the church and in Christ Jesus throughout all generations forever and ever, AMEN.”
(Eph. 3:20-21) the reason you couldn’t imagine what the drug could mean to your life is because God is able to do more than we can even dare to dream!! Praise God from whom all blessings flow!
C thank you for sharing that! God is so good!!
It has been so amazing to see you just bloom over the last year. Prior to Trikafta, I was afraid for you Mary. Praying for you to hold on. 1 year later you are almost a new woman and it is a blessing to see you live and move and have joy.
Thank you Naomi!
Congratulations!!! It makes me so happy to see just how much trikafta has helped Mary. I love getting to watch you guys and your contagious positivity
I have been around for so long and I have watched as Mary declined and lost so many of the joys she had in her life like horse riding lessons. I remember Peter saying how much coughing he would edit out cause Mary didn't want to hear it and didn't want us to have to hear it. And then I watched how real things got before the move and transplant talks ramped up. Then the joy as the small things became possible and then bigger and bigger! Everyone remember the first time she got to run with Ollie? Or just pulling out the umbrella without Peters help. Congratulations to you Mary!! I am so so excited to see your next victory. Love ya both!!
Thank you so much Lara B! We are so grateful that you are on this journey with us through the hard times & through the Trikafta times :) Thank you for those encouraging words friend!
So many things in the news are so depressing. It is truly wonderful to share in your good positive news. I started volunteering this morning at Feeding America of Southwest VA and it was a great experience. I almost took a nursing job down your way a few years back. Now I'm retired from home care nursing, and my days are still pretty full but it is great to do the volunteer work. Looking forward to getting my tiny air plants
Karen that's so exciting!! & yay we can't wait for your air plants to arrive!
Congratulations 🎉 thank you for bringing us along on this journey.
This is also totally separate but your podcast and daily videos have helped me find my way back to God. Thank you 💜
Thank you for celebrating with us jessie, we are so glad you're on this journey with us! & thank you for sharing that, we are so glad to hear you have been enjoying the podcasts and that they have been encouraging you and that you have been growing in your relationship with the Lord - how exciting!! Thanks again jessie, we are so glad you're here :)
Watching the change in your daily life has been joyous for me! I’ve been here a couple of years now -watching the decline and feeling concerned when the transplant week happened. The almost immediate and very noticeable improvements on Tricafta were encouraging and exciting. Watching all that you have done in your new home, the zero hospital stays, and no IV antibiotics, the energy for cooking, working on the house, getting out for walks and all the fun things you and Peter and Ollie and Harry do together blesses me every day. 🙌💕🥰 I pray for you to have years of improvement and extended time to be so actively engaged in daily life. HalleluYah for this blessing❣️❣️
Thank you Beverly for celebrating with us & for your continued prayers!
Congratulations!! I'm sorry there have been side effects, but I'm grateful the effects are so powerful. I found your channel when Trikafta was approved and I searched youtube to see if anyone had experiences with it. I'm glad I ended up here!
thank you mirimiriela480! We're so grateful you are here and love that you found our channel through Trikafta! :)
My 6 yo daughter starts trikafta this week. Very hopeful for her, and continued good health for you
I am so happy to see grow and not be in bed all the time I am so glad I have been a huge fan since 2017 .its truly amazing. I love y’all so much Happy TRIKAAFTVVERSARY MARY .😍🤩😍💟💟💟💟💟💟💟💟💟💟💟💟💟💟💟💟💟💟💟🤩🤩❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️😍😍😍😍😍😍😍😍😍😍😍😍
Thank you Noel!
@@thefreylife ❤️I really want to meet y’all huge fan but now is not the time.
@@thefreylife ❤️❤️❤️
Im so happy this drug has worked so well for you. I have always loved your optimism. Your channel brings me such hope when life is hard.
Happy First Trikafta Anniversary, you look so beautiful and I am so glad to see you living life and doing things that you’ve not been able to do!! You’re amazing Mary and Peter you’re an amazing husband. Y’all are so blessed to be together and have the amazing love you have for one another, you show what a marriage should be. I love you both and Ollie and Harry. Love, hugs and prayers to y’all from Indiana🐾😷🙏🥰♥️❣️❣️❣️❣️❣️❣️❣️❣️❣️❣️
Thank you Lori! :)
I was wondering if Trikafta has made y'all reconsider adopting kids. If this question is too personal don't worry about answering it. I'm just happy to see y'all doing so well and know how much you love your nephew.
Hi Meg, thanks for celebrating with us & being on this journey with us. & we are going to stick to our little family of 4 :)
Wow, just realized I've been watching y'all for a year and a half. I was so excited to see your results on trikafta, now it's been a year and I'm amazed and very happy for you.
Thank you so much Ashely!!
wow no way its been a whole year! gosh mary i am so glad you were here to witness and experience this miracle
Thank you hcneydew! :)
So happy for you Mary! You look wonderful! The two of you are so cute!
For most of us 2020 has been a truly horrible year but channels like yours remind us that good things are still happening. Happy Trikaftaversary! The plural is pancreases or pancreata,
Thank you Tosh Omni!
Trikafta is now approved and rolled out in Australia!
Mary, about the fatigue, have they done a blood count lately? They can also check iron Reserves ✅ including ferritin and transferrin.
I started a new asthma medication last year called Fasenra. What a year it has been! Less coughing every day, and needing less breathing treatments. I am so grateful for the Fasenra! It has worked so well for me. It has given me back my quality of life! Congratulations on one on Tricafta!
That's awesome!!! Congrats! I haven't heard of this medicine but that's amazing to hear that!
Miranda Stephens Thank you! The medication has been out since I think late 2017 or early 2018. It’s an absolutely amazing medication. It has given me my quality of life back.
THANKS be to our God!!! I can’t believe it’s already been a year! I am so grateful that Trikafta has made such an improvement in your health. You two are some of the most faithful and inspiring people I know and that is such a gift to me. I will continue to keep you in my prayers. Thanks for sharing your lives with us!
And thank you to the amazing doctors and researchers who found out the amazing combination that is Trifecta.. Without them this would not be happening
Thank you Mari! We are so grateful that you are here with us, celebrating with us, and for your continued prayers! Thank you friend!
hello Mary Peter Harry and Olie happy TRIKAFTAVERSARY! i have watched you since 2017 and subscribed that year i am so glad to see mary doing so well
Thank you so much Sophie!! :)
Congratulations and no hospital stays!!!! You are amazing and trikafka can!!! The fatigue is odd but you are doing soooo much more than most non CF people! Watching you daily sometimes I forget you even have CF! Hugs and prayers !
Just being able to see you fully laugh without coughing. Is wonderful.
i cant believe its been a whole year
Me either! It's nuts what can happen in one year
ONE YEAR!!! dam, im starting it next month here in the uk, cant wait !!!
Ryan that is SO exciting & such great news!!
God Bless the makers of this medication!!
TRIKAFTAVERSARY.....
An anniversary absolutely deserving to be celebrated with joy and thankfulness! It has been quite the journey for the both of you. Your daily vlogs have given us the opportunity to witness the amazing “ turn around” in Mary’s health. Such a privilege to be able to pray for you as well.
This is an exciting month for both of you and, I can certainly tell, an emotional one as well. PARTY ON!!! 🤗❤️❤️🙏🏼😘🐕🐱
Hi guys, thank you so much for telling us your amazing experience!
I'm from Italy, and in november 2019 my husband started Trikafta. He was waiting for the lung transplant since three years, and since five years he was on anthibiotic endovenous therapy every day, with no stop. Now he's not on the transplant list anymore, he's no longer on anthibiotic therapy, he doesn't need oxygen and he can walk for km faster everyday, he can run and jump and we can travel and live a normal life finally!! Thank you for giving me hope one year ago when you first started Trikafta!
Big hug and have a good life guys!
I cried a little watching this because I was so happy that you have had improvement over the year. I could see it in the videos and every day that I watched, it made me so happy. I am so happy for you and other people with cystic fibrosis. I'm happy that it has helped so many people
Happy 1 year anniversary on Trikafta! God is good!
Hi Mary and Peter, I'm so excited for you!! My son is due to start Trikafta in a few weeks, and I can't wait to see the difference its going to make in him. Fingers crossed it will be as effective for him as it has for you xx
How much time did this add to your story? How many more lives can you impact? I love you all!
Just started my Trikafta one week ago. So many questions are going trough my head. Trying to stay with my 2 feet on the ground 'cause I don't know how I will react but also hoping this medicine will work out for me. Thank you for sharing your story, and giving information. Greetings from Belgium.
Good luck on Trikafta! I'm loving seeing all of you get a chance like this. I lost my brother 20 years ago when they had just started the research for this, and it is epic that it is now saving lives. I hope that, like Mary and Peter, Trikafta gives you more than you ever knew to dream of. xx
@@lkm3s Thank you for your kind words! And I'm very sorry for your loss xx
Life SOMETIMES gives a SECOND chances !!!
THANK GOD !!! You are able to take this ride !!!
This may sound weird, but, how many people get bumped to the bottom of the transplant list because they IMPROVED soooooo much?? Mary, I pray that trikafta continues to work, continues to help your body heal itself, continues to help you get stronger. I pray that everyone in the world who qualifies for this life altering drug, gets it. 💜
Congratulations Mary!! To God be all the glory!! It is so wonderful seeing you moving around like you do now. Hallelujah!! 🙏🏻🙏🏻🙏🏻❤️❤️❤️
This has been truly an amazing year watching what this med has done for you guys! As I write this I’m crying cause I’m so happy! Keep up the good fight. God is so good. I love you guys wishing many more years of respite! 💟🤗😀
Mary no one deserves this opportunity more than you ❣ Love you guys❣ Oh Peter love your haircut ❣✂️
.Mary and Peter I Ve been watching you guys for about 4 years. I came upon you looking for iliostomy videos.!.,..so I do think it’s Gods will that I found you. The difference in your health Mary is nothing short of miraculous! I watch now and you never cough in the videos anymore! I praise God for the researchers wisdom in finding this medicine for you!
Oh and happy birthday month! Me too august 21st❤️🙏🏻🎂
I generally watch your videos every day, and I feel your pain with DMD/DMT (Disease Modifying Drug/Therapy) I have tried MANY drugs for MS (Multiple Sclerosis) one of the most scary side effects is death. Which really puts things in perspective of why we chose to take these drugs and deal with the side effects, because the medications make our quality of life so much better vs without the drugs.
Imagine if Canada was closer to the USA and if Canada was the country that discovered the gene, and if Canada contributed to any research, and if Canada wasn't a 4th world country, and Canada could afford the drug, and if Canada cared about its citizens.. then maybe Canada would have this drug as well. Then maybe my children wouldn't be dying with this disease.... IMAGINE. Anyways.. congrats Mary!
I'm starting Kaftrio next week and I'M SO EXCITED! I really can't wait to see how my body will react. It hasn't been approved yet in Belgium (it always takes years to get new drugs approved here) but I'm so thankful to be able to enter the compassionate use program.
Love seeing how well you are doing! I have been on Ivacaftor for 9 years and just a few days ago my mutation was approved for Trikafta. I wonder/worry what side effects I'll experience but am hopeful! How do you manage the headaches you mentioned and do they prevent you from working etc? I wish Vertex would split up the side effect list based on the 3 different drugs, but I guess I'll see in just a few weeks. Continue to be amazing!!!
Hi,
I’m very glad you are feeling much better, as we all know it’s a tough fight CF and this drug is GREATLY needed. Re your blood sugars, have you decreased your overall insulin needs? I’m 41 years old and have CF and we are eagerly waiting to start it here !! Being a diabetic as well I’m just curious of the blood sugar scenario as I always tend to run very close to the lower end of the spectrum!!
Thanks in advance and all the best x
Hi Guys !! Watchin All of the videos that I’ve missed along the way & makin sure I give Y’all those 👍... Truly Grateful 🙏😊💜
I watched some old blogs the other day and to see how it use to be and the struggles and to watch now and see the drastic difference I was almost in tears, I'm beyond happy for you God is so good. Happy Tricafta anniversary 😇🎊🎉🎊🎉
I wish you many many years of quality breaths Mary, you are such a nice and down to earth person, just love you both ❤️
Thank you so much Marina! :)
I'm also on Trikafta. I feel like a different person. It's crazy for me to say that I can't remember the last time I coughed. You mention in the video, you've had blood sugar drops. I'm having the same problem. It drops about 30 minutes after a meal and the drops happen quickly. I have mentioned this side affect to my doctor and they did a 2 hour Glucose test and told me I have Reactive hypoglycemia. I don't know but I think it's the Trikafta.
That was good info about oral antibiotics working, even iv antibiotics take longer to work for me now. Been on symkevi for 18 months now and had 2 courses if iv's, not bad considering before that I was on 3 courses a year. Just had docs sign off on my kaftrio (UK name) so hopefully start it in a few weeks,the biggest thing I'm hoping is that my cough doesn't keep me awake all night and I finally get a good night's sleep. Anyway enough rambling from me,glad u r doing well, keep fighting 💪
So happy for you Mary that this drug is working so well for you. I have only been watching your UA-cam for about 3 months now and have fallen in love with you two. I love your positive outlook and how you enjoy the everyday, simple pleasures. I found out about your UA-cam through watching Jeri-Ann Henson's youtubes, who is a big fan of yours. God bless you and you are in my prayers.
I remember that moment to. You had to take your first dose in the hospital room and be observed. But you did very well. Here's to another year. Ya!!! You are so strong. I'm trying to be to. I been thinking about you Mary this last week when I got the results of my MRI scan. Now I have to be strong to. I have been in allot of pain so I have 4 bulging disks in my spine they are pushing down on my spine. So they can do a kind of a steroid shot 2 of them in my hips one on each side of my spine. I am so scared. I'm reading up on this stuff the shot has a 74- 85% successful. That's what I'm looking at. It's not under 50%. To me that's good.
I live in the Netherland and we are actually numer 1 or 2 in healthcare and somehow we didn't have Trikafta yet. But we did since January 1st 2022. I'm getting my first dose this thursday. My lungs are currently at 50%. So I really can't wait to see what it will do.
I'm so glad you're doing so well! I noticed that you don't seem to talk about church and singing as much; I'm curious how Trikafta has affected your singing and your worship experience in general; however, I Imagine that's really personal so if you're intentionally not talking about it, I understand.
We finally got the CF diagnosis for my husband. He's been ill for so long and was being treated for bronchiectasis. The good news is that he now qualifies for Trikafta! When the doctor told him, I just cried. Because of you guys, I knew what Trikafta was and what it could do to make his life better.
I watch you guys sometimes but I haven’t in a while, and the difference in Mary is amazing! So happy for you both!!
A young woman I have known her whole life began trifecta like you, she gained 20 pounds, had one of her first periods and finds herself pregnant. Something she was told could not happen. She is 22 weeks and still knows should probably not be having a baby but so very excited that motherhood is possible for her! Congrats to you!
I just re-watched the video from last year (after this one of course) and I'm so happy to see you doing so much better a year later..... hopefully it will continue to go up from here!
Just looked at the side effects for Trikafta. They include but are not limited to headache, upper respiratory tract infection, the flu, and inflamed sinuses. So when you got sick back in March (?) it may have been caused by the medication since they were able to rule out any other underlying causes. Considering what you spent the last 30 years of your life putting up with it seems a small, if inconvenient, price to pay.
Your recent headaches had to be effected by the atmospheric pressure do to the hurricane. Moving to a new area also might effect your headaches. We have so much humidity.
Happy trifactaversary ! So glad u r doing better! Can the sub q Ig be causing your fatigue?! It seems like u have had it since u started doing the infusions again. Just wondering!
I’m curious if trikafta can have any benefits for your sister and other people who have had lung transplants? Not with lung function, but with the other aspects of cf like it’s effect on the liver, pancreas, etc?
I’m so happy that it has been working for you, it’s incredible to see your progress.
Happy Birthday Month and Trikaftaversary!
God bless y'all on your one year anniversary and wish you many many more. I can't believe the difference in Mary over the many years I have watched. I am so very happy for you and all the other CF patients out there who are able to take this wonderful drug. Have a great day and tfs. Take care........stay safe............
I am so Happy for you!! In Poland we are still waiting and I think that we won't be able to have it for Years... But it's still great to see How good it is and I still have a Hope that someday it becomes available! ☺️
Too bad Peter didn't wear the same shirt he had been wearing that day as well - very vibrant but couldn't tell what the print really is. The other thing I noticed is Mary's voice - what a difference. Not raspy anymore!
That's amazing. Congrats! I'm just getting emotional along with you, even though I did not watch you one year ago. But you bring comfort and joy and motivation. There was no way losing Mary back than. We need her and Peter.
I am on Xolair which is life changing to me. It's been five months now and I love and hate it at the same time. My asthma has improved a lot, but the side effects are killing me after injection day, but anyways, modern medicine is amazing, it's just my body which sucks.
I remember watching the August 2nd video hoping that you would make it to a week or a month on trikafta, knowing what cf can be like as my uncle has cf. Then you got to a week and a month and now a year and I couldn't be more glad. I can tell you're doing so much better and I can't wait to see what else trikafta can do for the both of you. My hope is that in a year's time we can have a 2nd trikaftaversary and maybe even a 3rd and a 4th. Love you guys and I look forward to seeing what else trikafta has install for you 🥰.
You might have had a headache because of different pressures in the atmosphere. It s been changing because of the storm coming . couple high pressures an low in between. Full moon also in .it all can affect you. It affects animals. Just a thought.
You aren't a UA-cam channel that I regularly watch but I do watch a video every now and then and the last time was probably a year ago I guess because just the clarity in your voice from your lungs being clear is incredible and I wish you well in the future!
So happy it’s been working! It’s so great to see you be able to do so many things you couldn’t do before!
So glad for how good you feel Mary Thank God for those meds Mary and also that you and Peter can enjoy life more now ❤️
So glad for the change it brought to your life and thanx for the best wishes for my birthday I was 29 when Mary was born
I hadn't watched a video of yours for months now but I saw this one and wondered how you're doing and ooooh I'm so happy to see how healthier and happier you look! Even your voice sounds different!
Did the fatigue come after you had the virus or before? Some people get fatigue after they’ve had a virus. :(
Hooray for Trikafta, because it’s helping Mary
Hi Mary, I was just wondering if your sister Rachel takes trikafta? If she doesn't will she take it or does she need to take it?
I’m so happy 😀 Mary!!
Mary with the fatigue and headaches I would look into Lyme disease with Ollie having it you and peter are at a higher risk of getting it because you are in the same area . Just know that the testing is very inaccurate the best test is called the western blot unless you use a specialty lab like I genix .
Its a beautiful thing to see someone else with c.f getting a shot at life . 🙏🙏🙏 I love your channels
I am so glad it came in time for you but sad for all the people like Claire that it came to late for. But it makes me so happy to imagine how many people like you this will help.
Wow a year already! I think we are all rejoicing on ur behalf 🙏🙏
I don't know if you get tested for vitamin d when they check your blood.
Is this medicine is available in India ,my daughter is suffering with cf
Pancreas doesn’t end in -us but in -as so the plural probably isn’t pancrei haha!
Loving the vlogs keep it up Mary and Peter
Trikafta's not going well for me. :(
Congratulations on 1 yr. I hope you have many more!!