First IV Antibiotics in 5 Years | Unexpected Health Update
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- Опубліковано 28 вер 2024
- [Vlog 3.28.24] - Cystic Fibrosis Clinic didn't quite go as expected. It's the first time in 5 years (since starting Trikafta) that Mary's lungs need IV antibiotics.
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Welcome to The Frey Life daily vlogs! We are Peter & Mary, a married couple in our early 30's, showing the ups and downs of everyday life with #CysticFibrosis, a genetic lung disease that Mary was born with. In August 2019, Mary started a new CF medication that changed the trajectory of our future, and life has changed dramatically - including our son, Elijah, joining our family in December 2021. We also have an adorable standard poodle, Oliver, and a hairless sphynx cat, Harry. It's our hope that these videos can be an encouragement to to celebrate the little things in life and find joy amidst a world full of hard realities!
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Honestly just that statement: “we r on our way to pick up our kids”
Crazy. Crazy wonderful.
😢😢😢😢😢😢
Its been a very long time since u guys have updated us,i know your busy but a little update would put all our minds at ease 😊 There are thousands of people that have watched u for years including myself and are concerned about Mary's health Even if its just a community post to let us know that you're ok Sending you much love and hugs 🤗
I have been praying for them and will continue to. I look forward to an update whenever they are able to. Beautiful family.
It’s so weird not seeing Ollie with you. Five years is a good stretch for not going on IV antibiotics. You two are doing so good and staying busy with the two kids. I miss seeing you more often but I’m so happy you’re doing better than five years ago.
😢😢😢 I miss Ollie too
I have CF and I havent done IVs in 15 years. My lung function was very low 30s before starting Trikafta in Dec 2019 and I still didnt need IVs thankfully.
It's wonderful and exciting to see they have two kids now but definitely miss seeing Ollie too, he was a part of this channel.
@@teijaflink2226As far as I know they only have one child, Elijah. They are acting as foster parents for a baby as well though.
Why isn’t Ollie with her anymore is he retired
Have been watching you for many years now and must say really do miss your updates and it's now been a while so hoping all is well with the family ..God bless
Oh my god it's been five years since transplant evaluation 😮😮 I've grown with your videos and I'm soo happy to see you on UA-cam, thank you so much for sharing a peace of your life with us
Praying that the antibiotics do their job. Five years was a great run. It’s been amazing to see you do so well with trikafta. Have some quality time with your kids.
five years?!?! and i’ve been watching since long before that!!! i can’t believe it’s been so long!
I can’t believe how *little* you are coughing compared to even a few months ago! I’m SO glad Trikafta entered your lives!!!!
We all miss you guys But I know you are super bzy with the boys. LOVE YOU GUYS. I’m getting chills watching you. I have tears of joy in my heart.
One day at a time, sweet Mary. Our Father has this and He has you. 💜
I have had my own miracle like you Mary! I was in a coma, on a ventilator and dying in March of 2020. God sent my brother to tell me that I would survive. I spent a year on dialysis and had heart surgery. It was a long way back but I am living my best life! I still have health issues but nothing like I faced before. My quality of life is so much better! I try to stay positive and not squander the beautiful gift that God has given me. I am also on the transplant list for a kidney but so far I have managed to keep off dialysis. You have always used the tools that your team has recommended so well. I learned that lesson from watching your videos! Going on IV antibiotics is one such tool and you will face it like a boss!! You got this Mary!!
I wish you all the best and will send healing prayers your way. ❣️
Praying 🙏🏻 for you ❤
Praying for your good health and a healthy kidney!! ❤
Praise God. That's an amazing testament to Gods goodness❤
I pray you get all the things (kidney) you need as fast and safe as humanly possible! And I pray you're able to stay off dialysis til that kidney comes! Great big hugs and loves you you!
I'm so sorry that you have to go back on IV antibiotics, but I am so glad that you had a nice year run without them. I'm praying that your body responds well and that you are back on track.
I started watching you guys back in the basement days. At the time, I was perfectly healthy. Nearly 5 1/2 years ago, I was diagnosed with cancer (now stage 4). I have twinned with you on so many issues (facing a terminal illness, having a port and frequent infusions, bone marrow suppression and neupogen shots, splenomegaly, lung issues, breathing treatments, malnutrition, and struggling to maintain weight, etc). Watching you go through these things has been invaluable in showing me what to expect. You have also shown me that you can tackle health crises with strength, grace, humor, and positivity. Thanks for sharing your journey.
Praying for continued good health. Enjoy those beautiful boys.
I can relate too. also been watching the frey life for many years and it's helped me facing my own struggles w dealing w lifelong diseases. you're right they really show n inspire strength n Grace. praying for your healing 💜🙏
@@Joy.Elizabeth Chronic health issues are definitely tough. You'll be in my prayers.
Sending healing thoughts and prayers your way!
@@Judymontel Thank you!
@@lisatowan4536 thank you so much! 💜
Wow!! Five years already. Where does time go. I hope everything worked out good for you. I’m sure by now you’re running, and playing with the boys. It seems funny to hear you say you have nothing to vlog about. We always loved watching you bake bread, or make new dishes, your paintings, little adventures, gardening, and you, and Peter, dance. I do understand your time is different, and you have little helpers. I’m so thankful for these past two that you’ve shared. God bless all of you. Big warm hugs & love sent. 💖💙
You’ve got this Mary! I’ll be praying for you! Sending big hugs!
I have been here for years. I’m a nurse and YOU taught me all about Cystic Fibrosis.
5 years, WOW I HAVE BEEN WITH YOU GUYS THE WHOLE TIME❤
One of the long haulers here 😊 I miss your vlogs but totally understand that you had to change things and I am beyond thrilled for the life you guys are now living and am so happy to get these small peaks into that life. You have got this Mary and I hope the IV’s work and you don’t get too many crazy side effects. Those shots in the hospital made me think of Ollie and how he helped you 💜
Mary you have such a positive attitude and your always smileing we just love your personally for sure
You have no idea how much I miss your blogs. I've followed you as my "first blog family", added others as the years went by. You make me smile. Prayers for your health Mary.
Praying for the antibiotics to work with as little side affects as possible.
Thank you for sharing with us ❤
Praying for you, Mary 🙏🏻 It’s okay to cry…never feel bad for tears, they help us let out all those emotions bubbling up inside, instead of just trying to stuff them down!❤❤❤
So sweet of you to give us an update. I’m so happy for you were able to expanded your family. Dreams do come true. ♥️♥️
Hi Mary, can you let us know how you're doing on the IV antibiotics? Praying for you!!
I literally dreamed about you guys last night. I knew I had to check in. The babies were there too. Miss you all!
I have followed you more than 5 years, I was with you both from your old home. Then the move to Durham,??? but for some reason I have lost you in the last year. Lucky I know your name and found you, finally.. The last one was Ollie then I lost you. You are such a champ Mary. Hope you get over this IV time and Port stuff. Mary I want to see you well to look after your 2 little boys and the big boy Peter xx. Love your family. Get well Mary xxxx
I'm so thankful for Trikafta! I wish my best friend was still here because I would have loved to see her not be coughing from CF. ❤
I really miss seeing y’all just vlog saying we’re still here. Seeing your smile and how much y’all love each other is wonderful.
You got this. You have an amazing husband and kiddos that will be there to give you all the love you need. Keep smiling we are all here for you.
It’s Ok to cry .. but you’ve got this Mary ❤
It is so amazing to see and hear your guy's voices!! I miss you guys so much!! Sorry to hear about your setback but wishing you a speedy recovery!! ❤
I have watched your channel for years. I never expected I would need a lung transplant. I am a non-smoker. I got histoplasmosis when I was 40. Fast forward to Christmas 2023, even with my Covid shot. I got Covid and pneumonia and blood clots in my chest. As a result, I was diagnosed with pulmonary Fbrosis. I am leaning heavily into your positivity to draw strength.
Miss ya’s….. glad to see you again💕I wish you a speedy recovery ❤️🩹
I've watched you for years. I hope you do well and feel better soon. It had to be tough news. Keep us posted if you can. Prayers!!
That is GREAT for a Cystic fibrosis patient! ❤ I really think your healthy diet helps and your spiritual life and good support by your husband. I have taken care of Cystic fibrosis patients your age. Thank you for letting me be a part of your journey.❤❤❤ I am a Christian and a Respiratory Therapist and I love your spirit and they joy you have.
Missed you guys !!! So glad you have been doing so well the last 5 years Enjoy your beautiful family
I’ve missed you!! Mary I’m praying for you! ❤🩹🫁Here’s a verse I love for when I’m going through a hard time: “From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings.” Psalms 61:2-4
That is a long scripture Lol I cannot memorize that 🧐
@@frankiekohl1593 I make songs for all the verses I want to memorize. It really helps😉
So glad to see you guys and sorry to hear about iv antibiotics but you made it 5 YEARS thats incredible! Before trikafta you barely made it 3 months
Praying for you and your family.
I've been here since Scotland and before that !! You've come so far it's amazing !!!
Sending up prayers for you tonight Mary ! I am sorry you're in this fight again. Praise God thanks to trikafta it's been five years no IVs ! Keep us posted. Love Sonia, Australia 🦘
Oh sweet sister! Feeling the struggle. I feel like we have similar journeys…in and out of hospitals, PFTs, echos, and infusions at Boston switched from IVIG to l SubQIg and now looking into moving to North Carolina. I couldn’t handle the cold weather anymore and moved to Florida but can’t handle this heat out here. Nobody from my church community understands this struggle when you look normal from the outside 😅
You hang in there, you got this. I've missed your videos, but I totally understand. Be well!!
I have been watching you guys for so many many years, probably around 8 years. I have chronic illness that largely is largely neuropathic (central and peripheral) but two years ago I was diagnosed with Type 2 respiratory failure, COPD, Interstitial lung disease and I also have severe central apnea along side a couple of cysts on my lungs that need careful watching. Now I am having to understand ‘lung stuff’ and do PFTs. I think I would be finding it all a lot harder and more frightening if I hadn’t been watching and learning from you.
Our situations are very different, totally different conditions, treatment plans not to mention that the COPD, interstitial lung disease and suspect cysts are my own fault. 28 years of heavy smoking did the damage you know it will do but think it won’t happen to you.
I managed to stop smoking right away and haven’t had another cigarette since. The thing that his home to me was that I have life limiting conditions already, my neurological problems are going to keep deteriorating what ever I do, I have no control but with my smoking related lung disease I can do something, I can slow it down and I couldn’t look at my kids (19 and 16) and not do everything I can to be here for them as long as I possibly can.
You look so happy and relaxed with this new challenges! You will be better soon and I love your positive attitude
Blessings and good health for all the family.
We started trikafta last September with our little guy. We just had to do our first round of oral antibiotics this last week. What a blessing it’s been to be off the antibiotics for a while.
So what I'm hearing is that tricafta works for a while then your body gets used to it. That's very unfortunate, do they up your dosage? I am medically retired and have an autoimmune Disease. My illness never goes a few months without reminding me that it's here a.k.a. Hospital visits Doctor visits Doctor telephone appointments. I got covid in November like 6 months ago and I had poor circulation in my hands and feet. And this December that just passed they had to agitate my right index finger and now at go to therapy for that and mentally this has been a hard place for me to get over but I am very slowly. Glad I couldn't vent here miss you Mary and Peter.
@@frankiekohl1593 It actually works perfectly! Before Trikafta a person with CF would likely be on antibiotics+ more often than not. Going on oral antibiotics once in 9 months when your used to a week gap in between rounds is nothing short of a miracle 🙌
We're here for you! ANYTHING YOU ASK!! Boy so you have an entire TRIBE PULLING FOR YOU SWEETS!! You just say the word and we'll be there for anything you guys need!!
Great BIG HUGE hugs and loves to you all!!
So glad to see you both, and miss seeing you on a regular basis. All the best to you, Mary, regarding your health and Peter managing his annoying allergies. Sending love to the kiddos.💕
Prayers that they do the trick. Hugs!
Love you, fam!! Praying for you Mary. Have a blessed day! I think of you all very frequently and pray. Feel better. Love wearing my Frey Life shirts often.
Praying for you, Mary.
Wow so good to see you guys again! Miss your vlogs but do understand. Take care Mary and update us please. Five years WOW!!
Missed the vlogs
I have been around for a long time watching. Praying for you and a speedy recovery...
Hopefully the antibiotics do the job they are intended for. Praying for you guys.
Hang in there , step by step . Rest . Love from the UK
Can't you come back every week or every month and give us a video. I really miss you guys so much. You just completely stopped everything when so many people were there with you all for so long and cherished seeing your content. Can't you think of us too and at least make a video every month. I really miss you all.
agree
I have been very worried about her health as this last video indicated it might be going down a little.
@@KathyD66 She has been doing well on the Trikafta and so that season for them is better. She is doing well, it seems. I just wish they didn't abruptly stop making videos because they are in a new season of life. The people who watched and supported them all of those years who might have also been suffering shouldn't be forgotten. It seems like something they could never do to the people who cared for them and also needed caring. I know they have busy lives now but don't forget the people who really needed them and cared for them.
I get what you’re saying, but people move on. Growing the channel suited them at one point in their lives, but they’ve moved on. Take whatever you got from their channel and be happy with that. Nothing lasts forever; tv shows end after so many seasons; it’s the same. They are not your family or friends; they are strangers making content…or not.
@@Catfluff521 Yes, that's true. I just really had hoped that they wouldn't have forgotten about us here. The people who really needed them and supported and cared for them and got so much from the channel. You're right, everything does change, but I didn't think this would be one of them. Even though they were strangers, they felt like more than that to a lot of people. They actually were like family. I'm very sad that they stopped posting and I wish they would make videos again even if every two weeks just to check in. I think they knew how many people the channel really helped and to just stop all together seems to me like something they wouldn't have done. I understand what you're saying though but I wish it wasn't the case ):
It’s been a minute since I’ve had the ability to watch vlogs. Can some one update me? Why isn’t Ollie with her? What are her kiddos names? (Asking at the beginning of the video)
Also 5 years ago, I was 21 years old and I remember watching you all everyday and you guys messaged me back a couple times and it always hit me in the heart with how you actually responded to people I was going through my mom dying from cancer and you reached out Mary and I cried because you were so sweet to me. All this to say I love you guys and am glad to see how well your both doing!! I pray for you guys
Sadly, Ollie passed away months ago, late last year. They did a vlog about it, if you want to watch. He had cancer that had spread all over. He passed around the same time as my cat did from the same thing.💔Their son’s name is Elijah. The other baby’s name hasn’t been shared, but I think they are a foster placement, unless that has changed, so they can’t share any details. I hope this helps and you are doing well!
Okay, guys, can you come back now?i miss seeing you guys😢
Really missed the vlogs, so good to see you both! God bless you all! Xx
Love you, Mary....AND Peter as always ❤️ so glad to see your faces
Thinking of Ollie. God Bless your journey. May you enter a beautiful & peaceful season. ❤
Miss all of you , hope all of you are doing well❤
So glad to see you guys again. Please feel better soon and I dearly love you guys! Prayers and hugs❤
It’s so good to see you again!!
I have been here for health, the family growth, and the fun ya’ll have fun together! Feel great again soon Mary!
Dang! I was hoping the trifecta would go a bit longer! I’m glad to see you but I wish under better circumstances! Love you!
It is hard to believe that it has been five years. I am still just in wonder that a single medication has made such a difference in so many lives. I do miss seeing you guys all the time but I love hearing that your life is so full and joy. Little did I know when I started watching your channel that your medical journey would give me a lot of education of where I ended up. You always shared all your port stuff and when I ended up with my port I was like hey I saw this in the frey's videos. It is so interesting to see where life takes us and even though you can't and don't share as often as you did we still all love when you do. Life is enjoyable even in the midst of hardships. I hope antibiotics go well for you! Feel better and keep up the joyful life that you have!
Mary, you are fantastic and such good parents. Treat your body with TLC your babies need you. I miss seeing you with the boys, even though I haven't seen little boy #2. Be happy safe and wishing you good health.
Peter and Mary, I just wanted tp let you know that my mother Anna Edwards passed away on Friday. She love the cameo you sent her. She always asked me how you were doing. She loved your videos. God Bless
I love you guys so much I have followed y'all for 8 years. It's amazing how much your life has changed in 5 years. I love that this is the first time In five years that you have needed IV antibiotics. The comment of we are on the way to pick up our kids just made my heart so happy. I am praying for you and sending lots of love ❤
literally sitting here crying (happy tears) at the fact that i watched videos of y’all talking about not starting a family.. and now you have 2.. and mary was so so sick always.. and now she is well (for the most part)… and gosh…. God is just so GOOD!!!!!!! you both deserve SO MUCH good in this lifetime! i’m so freakin emotional 😢❤😊
You’ve got this Mary! I was sooo excited to see you back, but I hope you’re ok!! You’ve been truly missed, but your Family comes first and foremost above everything else.
Miss you guys! You guys have been one of my favorites to watch! Hopefully to see you guys more often!
You got this, praying for you all.
So happy to see you two!
So happy to see both your beautiful faces. Mary you got this girl! As a team you , Peter and the hospital team will always have your back and we are all praying for you. Keep that positive attitude and cry if you have to it’s a tough time and you have to take care of yourself so you can be as healthy as possible for you and your two beautiful babies! Sending love and hugs to you both. God bless. ♥️🙏😊
Oh you guys I’ve been following your journey since you both lived in the home next to the church Peter pastored at in the north.
In that time I felt not alone with my different chronic illness and i am not able to conceive so my husband and I found joy in finding a married couple working through life. Hugs to you and your sweet family.
Good luck with the IV antibiotics. I’ve followed you a long while and have found that your courage spurs my own while I deal with mitochondrial myopathy. I have a Hickman and do fluids every night so I know how the IV management goes. Hang in there and keep on keeping on. 😊
Glad you can blog when you can!
Hey Mary! How did the IVs go/how are they going? We miss seeing you! Hope you are well! Praying for you!
How are you guys doing?? Been a while! Hope all is ok?
It's so good to see you two!! ❤️
It's so good to see you and hear from you both! We all miss you. Not sure how I missed this update, but I'm now caught up...lol. Hang in there, Mary. Praying for all 4 of you.
You’ve got this Mary!!!
I'm grateful for the excellent medical technology that we have today. Praying for you!
You got this mama! Sending all love and a big ole hug! It sure was great to see you two! I miss seeing you guys!
“You guys are just little medical nerds” 😆😆
I’ve missed your vlogs, Mary, but will never be sad that you have nothing to update. So happy for you ♥️♥️♥️
Thanks for sharing. Y’all are an inspiration.
Hi Mary! Your video came across my page today, I don’t think I’ve watched you since I was 19 years old and I am now about to turn 25. I think it was you, in a video that talked about your experience being in a coma, and feeling like you’re in a hammock on the beach or something like that my memory is relatively vague, but I want you to know I think about that every day, the idea of being in a coma in the importance of life. I never revisited your videos because it got lost in the feed and honestly I gained different interests but I want you to know that you completely changed my life experience and how I viewed life and how important it is to be grateful for every single day. Thank you.
Sending you love and hope you are feeling improved. So sorry that this happened- I can still see both of your faces during the time when you hadn’t revealed you were going for a transplant evaluation….and how sick you were and weren’t able to walk a few steps without being winded and coughing. …..and here it is 5 years later and you trikafta can. Such a gift to see you both and update us. You are such a beautiful family couldn’t be more happy that you have a life that you wanted and dreamt about. - Sonia
I’m so glad you guys are doing good and I’m so glad you’ve been healthy Mary. So crazy to think that 5 years ago it was so different! You guys have nourished the little medical nerd in me all these years and now I’m five weeks into a biomedical science degree!!! Thank you so much and I’m so hopeful that the IVs have gone ok ☺️.
You got this Mary!!!!❤❤❤❤❤❤❤
This is so crazy! I remember when you spent Christmas in the hospital and I was so sad for you. I celebrated with you when Vertex (well you know) turned things around. I cried with you when you sat down to have the call with your team about transplant and was so excited when you jogged that little bit after starting Trikafta. It's so wild it's been 5 years!
I don't know how many yrs I've been watching you. I can say it was way before your sister adopted her son
I miss yall it been 4 months and did yall leave UA-cam cause y'all health hopefully you'll come back
Hi Mary & Peter! Hope you are doing better after your IV antibiotics. This year I have been taking a preventative medication, Quilpta, for my migraines. It has been a lifesaver for me as I have gone from daily migraines to maybe a couple a month. Take care 🙏
it makes me happy to see your face but also so happy when I do not see your faces. I miss Peter's smile lines I miss Mary's little sounds of happiness but knowing that you are "healthy, happy, and living life" with your kiddos makes me not miss you as much.
thank you for sharing this day with us.
Love your faces
So happy to see your smiling faces!!!!! Praying for you guys!!!! You got this!!!!!! 🙏🤟
I've been here for a while and I am so impressed with your resilience. You show us that it is alright to take things as they come, no matter what that is. I am praying that everything goes well for you and you have very, very mild effects from the antibiotics. Take it one day at a time. You are truly blessed.
This morning I put on my "Do what you think can't do" shirt! And now this pops up, pleasant to see you guys. Well I update you on my life. I've done a good job learning to lie alone after losing my Wife. You kids keep us updated...please