Hey Frey family, I'm glad yall are doing well. Just wanted to share some amazing news from my family. Over Christmas, my dad received his kidney transplant we've been waiting so long for. It's very bittersweet, of course, for the family who lost a loved one, but it's such a blessing to ours. He is doing so well and we are so grateful to the young guy who decided to be an organ donor. 🙏
I'm sure the results would have been much different without the cold Symptoms or even the flu . that great you passed the test and you can Go on your trip now..
It's so good for children to be raised with pets. Supervised they learn to be gentle and compassionate caring for God's creatures. You're doing a great job with Elisha!
So happy for your results.I’m having a lung function test on May 9 th.I had CETEPH ,blood clots in my lungs in 2021 .I had a 10 hr surgery and two months in hospital .Hoping that my 6 minute walk and pulmonary lung test is good.I’m 71.Prayers appreciated.🙏🇨🇦
You are cracking me up today about the Little Debbie's. "If you think you are too fancy for Little Debbie's Snack Cakes..." I legit snorted and thought, "Oh my gosh, I've been slumming it my whole life!!!" 🤣🤣🤣🤣 I absolutely love a hearty laugh, Mary! Thank you so much!!
Hello, Peter and Mary! I have been watching your videos since May of 2017, when I was a patient at Mayo Clinic for Cancer Treatment. I was hospitalized in Rochester, Minnesota at Mayo, recovering from the radical removal of my Scapula, otherwise known as the shoulder blade. My recovery was long and arduous, but watching your TH-cam videos helped me endure the pain,the Hyperbaric treatments, and the 7 additional surgeries to remove so much infection. I am also a committed Christian and find that even though my two cancers I have come through, my immune deficiency, and my physical disabilities are all ways that God has allowed me to glorify Him! It's rough! However, the Joy and the Peace that I receive, the ability to teach second grade Sunday School each week, and the encounter I have with so many medical people, is actually a huge blessing! God never ceases to bless me in ways I just can't make up!🤣 The miracle of your son Elijah is a wonderful example of how God is Large and in charge and will bless us in ways we thought were no longer His Will. It seemed that God had already shut the door of you and Peter being able to grow your little family, but by the Grace of God, along came Tricafta and the BIG, HUGE, MIRACLE of tiny Elijah!!!! God had that plan all along, yet although you and Peter desperately wanted a child, you also knew with your health, it was not a wise decision to adopt, and as hard as that truth was on your hearts desire, you and Peter allowed it to be well with your souls. With my immune deficiency, I have spent most of my life in hospitals. I more than doubled my weight in my twenties because I was dependent on IV Solu Medrol IV antibiotics, and oral Prednisone. I was also on multiple medications, including insulin because of the harsh, life limiting side effects those medications caused me. I was living a life of catch 22 every day. And then one day, several years ago, I was introduced to IVIG. It took some time to get the right dosage down, but now I am completely off all steroids and my weight has come way, way down as well! I still have medical issues that I deal with, like I mentioned earlier, I have gone through Cancer twice, am permanently disabled, and still take medications, BUT, I am so much better than where I was before the IVIG, and for that I am so very thankful! God has put His people in my life and one of those people is a Christian couple who brees Golden Retrievers. This couple wants to give m one of their puppies so it can be trained to be a Mobility Assistance dog for me. I have scoured the internet in search of a facility who will train an outside dog to be my mobility Assistance dog, but every facility only uses their own dogs and will not train mine. I am wondering if you and Peter would pray with me on this need that I have and perhaps talk to your friend who trained Olly to see if she knows of someone who does this, or, if she is willing to take my dog, Boston, who isn't even born yet, and train him. I am in the process of saving money for getting Boston trained after he's born, had his shots, and is old enough. I should have $4,000 saved by the end of the month. I am on Disability and receive an SSI deposit in my bank account each month. I use that money to pay for my Rent, my car Insurance, and groceries. I am a Respite worker for a Godly Christian family who has a daughter who was born with Arthrogriposis. They adopted her at age 4 from China and she is now 11. I have had the pleasure of working for them for five years now. Even though I am disabled, I get around well with a Walker and because God is so Good, Lily, the 11year old with Arthrogriposis, and I are a great fit for each other even though it doesn't quite make sense. As a rule, people who receive Disability are not allowed to earn money, but I fit the criteria for a program called MEPED, which allows people on Disability to earn money as long as it is under a certain limit like $500.00 a month, or something like that. Anyway, I am sharing this all with you to encourage you and to let you know that your videos make a HUGE positive difference in my life. I have bought a couple items from your store, the first was the sign that says Do What You Think You Can't Do! I had that on the door in my hospital room at Mayo when I had my Scapula removed due to Osteo Sarcoma. Last year I ordered and received your blue hoodie that says You Got This! It really comes in handy on those cold snowy days here in Cedar Rapids, Iowa! I have been praying for you two and of last year, for you three, all along the way since I found your You Tube Channel. It is a privilege to pray for you and I will continue to do so. I am so appreciative to you for plugging ABLE Now! That is how I am able to save money in a separate savings account for my future dog, Boston. Thank you for serving God with your lives publicly, I am just one person who's life has been blessed by your service to God!❤️ You can text me, my phone number is (319) 329-2373. I attend and serve at Stonebridge Evangelical Free Church in Cedar Rapids, Ia. My pastor's name is Brandon Levering. The funny thing is, he pastored a Church and raised his family in Boston. He and his wife, accepted the call to pastor at my church here in Iowa. My surgeon at Mayo Clinic, wanted to surgically put in an allograft scapula, but moved from the Rochester, Minnesota area to teach and operate Harvard Students at Massachusetts General Hospital in Boston. I knew no one in Boston and didn't have the money to pay for my hotel, so my new Pastor , got in touch with some of his former church members. Between his former church and Stonebridge church in Cedar Rapids, and generous help from my surgeon, enough money was raised to get me to Boston for my surgery a year ago in December! I just think this is cool knowing that you two are familiar with Boston from your time there! Anyway, please pray about this Mobility Assistance training for my dog Boston who isn't even here yet and see if your friend is able to use her knowledge and skills to point me in the direction of someone who can work with Boston or work with Boston herself. Thank you 💗 Please feel free to look me up on Facebook and/or get in touch with my church in Cedar Rapids, Iowa. Like I stated earlier , our head pastor, Brandon Levering, pastored a Church in Boston until he moved here to Cedar Rapids just a couple years ago. Pastor Brandon, or any of the other Pastors at my church would be willing to visit with you about me if you have any questions. My church is Stonebridge Church, and the phone number is (319) 396-4525 and the address is 1829 Stoney Point Rd. SW Cedar Rapids, Ia. 52404
I had a virus from November to mid January that had my lungs so junky (wasn’t COVID, Mum says could have been viral pneumonia or influenza), but you were on my mind for a lot of that time. Just, your constant love for life and seizing the day, especially pre-Trikafta, and your positivity, really got me through some very tough times, especially for November, which I spent in hospital, and NYE, where I was discharged by a nurse after 14 hours, despite my inability to stop vomiting*. But, I thought to myself, what would Mary do in this situation? I ended up trying to be nice, asked if they had a phone I could use, so I could call someone to pick me up, then, with permission and the last bit of adrenaline I had, I wobbled to the nurse’s station and was so brain fried that I could only remember my parents’ *landline* number. I called Mum, Mum called my wife, and I tried to find a spot to sit where my wife would find me (I ended up back in the ER waiting room, and then tried not to look completely nuts to the one other person waiting; my wife found me, but she also ran into the nurse who discharged me, so I could finally commiserate). I didn’t yell at anyone, I didn’t sob, I thought of you, and I got through what seemed impossible in the moment. Funny thing? I stopped vomiting by the time I was home, and actually felt a bit better. So, maybe it was by God’s leading that I ended up back in my own bed within 24 hours. Then I had junky lungs, a very productive cough, and extremely disgusting tasting mucus for the rest of January. And that, I got through, with a lot of sleep and reminding myself that you’ve dealt with much worse, and come through it - and that made me feel so much less alone. Thank you, from the bottom of my heart! 🧡💚💛 Sasha * - Because the doctor was writing my orders for day shift, and since she had no orders (she didn’t check with anyone, wouldn’t listen to me, just assumed - I still have the scars from where she took the IV out (I can, and have taken out IVs (from myself, with nurse permission), with more care and less injury than that, so…wow)), she sent me home. I’m not great in situations like that - I either get angry or sad or just, completely nonverbal (I’m autistic - severe pain and nausea can just overwhelm my brain to the point that my ability to speak just kinda disappears).
I'm so happy for you and your results! I'm on oxygen 24/7 and my left lung is at only 20 percent. I haven't smoked for at least 30 years. I had a triple bypass in 2017 where I had some lung damage after that. I really have a hard time to do things and I do get depressed a lot!! I'm also so very happy about your trip to Florida and for who you're going to be seeing. I hope we get to see some of your visit, take care love you all bunches!!!
You and Peter have such a beautiful relationship Mary. So beautiful. What an absolutely beautiful family. What courageous people you are and you face life with love and you do so well. So grateful that your lungs are where they are at.
In case you ever get back into a situation where you’re thinking of bringing the bedroom downstairs because the stairs would be an issue, you could also add a stairlift to your stairs, either to keep the bedroom upstairs, or to allow Mary to use the bathroom upstairs. I get out of breath going up my stairs (bedroom and bathroom upstairs) because of weaknesses, and since I added a stairlift to my stairs, it has been life changing!! (I’m 38, there is no age for stairlifts 😉)
That's kind of a great idea to get a chair lifts for the stairs in case of limited mobility settling in can't walk suddenly confined to using a wheel Chair and getting a handicapped plaguer for your car .. It something to think about in the long run!!!
@@ivark56ofPA definitely! And it’s not at all as bulky or house-altering as I thought it would be. They now make them sleek and the stair steps support the rail (not the wall). I also recommend looking into financial aids to help cover some of the cost (in my case an MS association grant for equipment). Once I had it, I wished I had installed one way earlier
The little debbie cakes make great cake pops...they are the best consistency...mash them in a bowl and make the balls...then dip them in melting candy...so amazing...
Wow. I've got tears in my eyes. That cough sounded so deep... so familiar.... yet - you were coughing and still breathing out, I was - hmmm. This is. Wow. That's all. Wow. So heartened. Miracles among us.
Stability is amazing. I’m so happy for you. I don’t have CF but I get regular lung infections, PFTs are so stressful. I’ve had my second infection of 2023 with only 22 days between them. So it’s getting worse with low lung function
Just wow! Incredible that your lungs are so stable at the moment! And just imagine what it could have looked like had you not been dealing with a cold at the time, I can only imagine your results could have been even a bit better if not having a cold or recovering from a cold when you had your clinic appointment. Hope you guys have or had a wonderful time in Florida!
That good to hear that you passed the test that the medication is doing its Job and not wearing off.. Those numbers from the doctors were accurate Enough to go on your trip. I think you have the best group of doctors really Working on your case . I know the crew have a good track record there.. To get you a stable is definitely good news for sure!!!
Good job Mary!🥳🎉🥳 I cried during your CF Clinic because I've been following your channel for years. I see the journey and what a blessing Trikafta has been in your life. God is so good! No more colds for YOU🙅🏻♀ All the best to all of you💕
I'm so happy for you Mary. I thank God with you for the stability. Month after month Trakafta continues to remove the veil on who God made you to be and all he wants for you to experience.
Mary I’m so excited that your PFT were so good for what was going on. Elijah with Harry is very touching. Oh I can appreciate a little Debbie now and then. Hope you all had a nice Valentines Days. ❤
When I first started watching your channel, I think around about 2017, it was in the days where you used to have to brace yourself because going up the stairs would often lead to vomiting. To think of where you are at currently is amazing. x
1. Praise God! Holy nuggets, Batman, you’ve got mighty 🫁 I’m bawling over here! 2. So ThAt’s how big a poodle poo is?! Prodigious! 3. Good gracious, the Harry/Elijah moment was adorable! 4. Little Debbies are where it’s at! 5. I love the crap out of you guys! Enjoy your journey! 💚🙏🕊
Mary, No dis respect, I really CARE about YOU and your beautiful family and fur babies.. PLEASE PLEASE wear a MASK in public and protect yourselves and others! Of course your free to do what your want to DO, I'm just worried! ( hugs). Love and light Priscilla
I have major heart & lung disease and not being able to breathe is scary and I’m in a wheelchair. I have had Levaquin and it worked on the infection in my Mechanical Heart Valves but had to take 2 prescriptions and boy it made me nauseous 🤢serious headache and my bones were on fire. I couldn’t eat or even get up an sit in my recliner. I also had night terrors, but it saved my life. I’m getting some kind of infection again and I’m on 3 Antibiotics this time but it’s not really helping and it’s my second round. I don’t want to go to hospital but I’m getting to the point I’m going and back on Levaquin🥴added to what I’m already taking. I’m considering getting my pacemaker and defibrillator taken out because I been doing this since 2017 Open Heart Surgery and I’m 64. The coughing actually has made me pass out. I’m really just over all of it. I like Little Debbie’s some of my students use to bring them and it’s University…I miss working and just walking. I have been so happy for you improving health and Elijah is such a blessing❤Be safe and healthy to your whole family 🌹
Yay for stable lungs. My are stable too from asthma. Celebrate good times come on its a celebration. I grew up with Liitle Debbie the chocolate wafers. So cute how Elijah loves Harry and said meow God bless.
At Christmas my 5 yr old granddaughter came to my house, which is across the street from her’s, and she was so excited that her mommy got her and her brother “Christmas Pastries” for after dinner! I went to have dinner with them and when they finished their meal she jumped up and ran to get her pastry. It was a Little Debbie’s Christmas Tree cake! 🤣We laughed so hard because she thought it was the most fancy special Christmas Pastry ever and had me expecting that too. She’s such a hoot! Nobody in this family is too fancy for a Little Debbie’s snack cake😂❤
As a sufferer of lung issues,,,asthma/COPD/Bronchietasis,,,my doctors/pulmonologist and repiratory therepist that are caring for me are rather perplexed because I show signs of having all 3 of these conditions,,,,,,I am so glad to hear your are holding your own sweetheart you deserve at least that good news, hang in there girl you have many good years yet to come,,,I turn 57 in a month and just 2 days ago I had another PFT and I'm holding my own (no better no worse than my last PFT a year ago,,,,even though I got to spend a night in the hospital not long ago because of respiratory distress because of my issues),,,,,and now the doctors are trying to help with my mucus/phlemg problem a bit more also,,,,,,so glad I found you guys channel not long ago (couple months ago when I was in the hospital ) because it helps to know you're not alone in the battle,,,,wish I was there for that extra shoulder for ya to lean on when needed for you,,,,but know that I am there in spirit all the way for you and that great guy you are married to can be that shoulder,,,,Peter seems like a really great guy,,,,take care and keep up the fight,,,,and take good care of that baby boy.,,,,oh and I would love to have little Debbie snack cakes but my doctor would porbly want to or possibly just punch me because we just got my bad diabetic numbers under controll,,,so be carefull not to overdo it and enjoy them for me LOL.
Those holiday variations of Little Debbie cakes are the best 😋!!! I would rather have those than any expensive dessert. I seriously think I need to go to the store right now, lol.
I love Little Debbie snack cakes. My latest addiction to them is the strawberry unicorn cakes. The strawberry isn’t too strong it’s just the right amount of flavor.
Oh boy those lungs are playing tricks. I was blowing right along with you. I’m glad you are going to Florida without worrying about this. I’m from SC in Phoenix now for 5 yrs. I hear it’s cool to cold that way so take warm cloths in case. But I hope you won’t need them. Enjoy your trip
If would affect it. She was coughing as she was blowing out. I do PFTs. She failed the first attempt. And, did four attempts. I can't imagine coughing like poor Mary is and sounds breathless and would be "stable" whatever that means to her. Cipro..nooooooo.
My cousin was able to get in the same medicine and doing much better too. And her son is growing like crazy. He was a preemie but healthy. She did give birth to him. Her miracle baby. But yeah she’s doing so so much better on the medicine you’re on. What a good drug that came out of trials. I’m so glad she was able to get on it. She’s even gained weight she needed.
We can’t let little Debbie’s here in Canada any more. I do miss them. So glad that you had stable PFT numbers. They do know, it’s also funny how we know. I always guess my numbers and I’m usually pretty close. I know if it will be worse or same. My last ones have been trending down and in the 50’s.
Wow, such great news! I was laughing out loud at your Little Debbie shout out. I'm a frosted fudge cakes girl myself. I probably haven't had them in over a year. It's now on my list, you should be sponsored by them. HaHa
Omg...when you were describing the Little Debbie's I said with the waxy frosting at the same time. 😁 PFTs are so hard and I can't remember the other one some titration test was even worse for me.
Heading your way tomorrow to the four seasons super excited hope there is an affordable store for 6 week old girl jeans 😊👍 also have low immune praying for a healthy trip for 1 day trip as well 😬 and diabetic gastroparesis hopefully I can do it 😊
Elijah and Harry together …. What a sweet moment. ❤️
Hi Mary I was wondering the gold thing in your ear does that for migraines because I get migraines xx Ps love you guys
The boy and the cat smuggling definitely a photo opportunity!!!
I'm still amazed at how much better you are. Having treated and lost CF patients at young ages I am deeply grateful for trikafta.
Hey Frey family, I'm glad yall are doing well. Just wanted to share some amazing news from my family. Over Christmas, my dad received his kidney transplant we've been waiting so long for. It's very bittersweet, of course, for the family who lost a loved one, but it's such a blessing to ours. He is doing so well and we are so grateful to the young guy who decided to be an organ donor. 🙏
"Stability is a miracle." Applies to this, and to all parts of life. Happy for Mary.
"Sick but strong." There's a sermon topic for you, Peter.
In the 1960s my parents never allowed sweets in the house. My grandma would bring over Little Debbie snack cakes for us. It was like Christmas!
I was having the same treatment at home, no candy with the exception of Saturdays! One quarter yielded 5 candy bars! 5 cents a piece.
Can you imagine how much better your numbers would have been if you hadn't been feeling cold symptoms!! Amazing 👏
I'm sure the results would have been much different without the cold
Symptoms or even the flu . that great you passed the test and you can
Go on your trip now..
It's so good for children to be raised with pets. Supervised they learn to be gentle and compassionate caring for God's creatures. You're doing a great job with Elisha!
So happy for your results.I’m having a lung function test on May 9 th.I had CETEPH ,blood clots in my lungs in 2021 .I had a 10 hr surgery and two months in hospital .Hoping that my 6 minute walk and pulmonary lung test is good.I’m 71.Prayers appreciated.🙏🇨🇦
You are cracking me up today about the Little Debbie's. "If you think you are too fancy for Little Debbie's Snack Cakes..."
I legit snorted and thought, "Oh my gosh, I've been slumming it my whole life!!!" 🤣🤣🤣🤣
I absolutely love a hearty laugh, Mary! Thank you so much!!
Elijah and Harry loving each other was the sweetest 🥰
Great news Mary! Glad you are teaching Elijah to be kind to Harry.
Oh my gosh! It took that to make me realize what a big cat Harry is! 💛
Hello, Peter and Mary!
I have been watching your videos since May of 2017, when I was a patient at Mayo Clinic for Cancer Treatment. I was hospitalized in Rochester, Minnesota at Mayo, recovering from the radical removal of my Scapula, otherwise known as the shoulder blade.
My recovery was long and arduous, but watching your TH-cam videos helped me endure the pain,the Hyperbaric treatments, and the 7 additional surgeries to remove so much infection.
I am also a committed Christian and find that even though my two cancers I have come through, my immune deficiency, and my physical disabilities are all ways that God has allowed me to glorify Him!
It's rough! However, the Joy and the Peace that I receive, the ability to teach second grade Sunday School each week, and the encounter I have with so many medical people, is actually a huge blessing!
God never ceases to bless me in ways I just can't make up!🤣
The miracle of your son Elijah is a wonderful example of how God is Large and in charge and will bless us in ways we thought were no longer His Will. It seemed that God had already shut the door of you and Peter being able to grow your little family, but by the Grace of God, along came Tricafta and the BIG, HUGE, MIRACLE of tiny Elijah!!!!
God had that plan all along, yet although you and Peter desperately wanted a child, you also knew with your health, it was not a wise decision to adopt, and as hard as that truth was on your hearts desire, you and Peter allowed it to be well with your souls.
With my immune deficiency, I have spent most of my life in hospitals. I more than doubled my weight in my twenties because I was dependent on IV Solu Medrol IV antibiotics, and oral Prednisone. I was also on multiple medications, including insulin because of the harsh, life limiting side effects those medications caused me.
I was living a life of catch 22 every day.
And then one day, several years ago, I was introduced to IVIG. It took some time to get the right dosage down, but now I am completely off all steroids and my weight has come way, way down as well!
I still have medical issues that I deal with, like I mentioned earlier, I have gone through Cancer twice, am permanently disabled, and still take medications, BUT, I am so much better than where I was before the IVIG, and for that I am so very thankful!
God has put His people in my life and one of those people is a Christian couple who brees Golden Retrievers.
This couple wants to give m one of their puppies so it can be trained to be a Mobility Assistance dog for me.
I have scoured the internet in search of a facility who will train an outside dog to be my mobility Assistance dog, but every facility only uses their own dogs and will not train mine.
I am wondering if you and Peter would pray with me on this need that I have and perhaps talk to your friend who trained Olly to see if she knows of someone who does this, or, if she is willing to take my dog, Boston, who isn't even born yet, and train him.
I am in the process of saving money for getting Boston trained after he's born, had his shots, and is old enough. I should have $4,000 saved by the end of the month.
I am on Disability and receive an SSI deposit in my bank account each month. I use that money to pay for my Rent, my car Insurance, and groceries.
I am a Respite worker for a Godly Christian family who has a daughter who was born with Arthrogriposis. They adopted her at age 4 from China and she is now 11. I have had the pleasure of working for them for five years now.
Even though I am disabled, I get around well with a Walker and because God is so Good, Lily, the 11year old with Arthrogriposis, and I are a great fit for each other even though it doesn't quite make sense.
As a rule, people who receive Disability are not allowed to earn money, but I fit the criteria for a program called MEPED, which allows people on Disability to earn money as long as it is under a certain limit like $500.00 a month, or something like that.
Anyway, I am sharing this all with you to encourage you and to let you know that your videos make a HUGE positive difference in my life. I have bought a couple items from your store, the first was the sign that says Do What You Think You Can't Do! I had that on the door in my hospital room at Mayo when I had my Scapula removed due to Osteo Sarcoma.
Last year I ordered and received your blue hoodie that says You Got This! It really comes in handy on those cold snowy days here in Cedar Rapids, Iowa!
I have been praying for you two and of last year, for you three, all along the way since I found your You Tube Channel. It is a privilege to pray for you and I will continue to do so. I am so appreciative to you for plugging ABLE Now! That is how I am able to save money in a separate savings account for my future dog, Boston.
Thank you for serving God with your lives publicly, I am just one person who's life has been blessed by your service to God!❤️
You can text me, my phone number is (319) 329-2373.
I attend and serve at Stonebridge Evangelical Free Church in Cedar Rapids, Ia.
My pastor's name is Brandon Levering.
The funny thing is, he pastored a Church and raised his family in Boston. He and his wife, accepted the call to pastor at my church here in Iowa.
My surgeon at Mayo Clinic, wanted to surgically put in an allograft scapula, but moved from the Rochester, Minnesota area to teach and operate Harvard Students at Massachusetts General Hospital in Boston.
I knew no one in Boston and didn't have the money to pay for my hotel, so my new Pastor , got in touch with some of his former church members. Between his former church and Stonebridge church in Cedar Rapids, and generous help from my surgeon, enough money was raised to get me to Boston for my surgery a year ago in December!
I just think this is cool knowing that you two are familiar with Boston from your time there!
Anyway, please pray about this Mobility Assistance training for my dog Boston who isn't even here yet and see if your friend is able to use her knowledge and skills to point me in the direction of someone who can work with Boston or work with Boston herself.
Thank you 💗
Please feel free to look me up on Facebook and/or get in touch with my church in Cedar Rapids, Iowa.
Like I stated earlier , our head pastor, Brandon Levering, pastored a Church in Boston until he moved here to Cedar Rapids just a couple years ago. Pastor Brandon, or any of the other Pastors at my church would be willing to visit with you about me if you have any questions.
My church is Stonebridge Church, and the phone number is (319) 396-4525 and the address is
1829 Stoney Point Rd. SW
Cedar Rapids, Ia.
52404
I am so glad. 🙌
So wonderful to see you not feeling great AND YET your lung function is stable and you are cuddling your sweet baby. And cat! 🤗
Way to go Mary!! God is absolutely good!!
I had a virus from November to mid January that had my lungs so junky (wasn’t COVID, Mum says could have been viral pneumonia or influenza), but you were on my mind for a lot of that time. Just, your constant love for life and seizing the day, especially pre-Trikafta, and your positivity, really got me through some very tough times, especially for November, which I spent in hospital, and NYE, where I was discharged by a nurse after 14 hours, despite my inability to stop vomiting*.
But, I thought to myself, what would Mary do in this situation? I ended up trying to be nice, asked if they had a phone I could use, so I could call someone to pick me up, then, with permission and the last bit of adrenaline I had, I wobbled to the nurse’s station and was so brain fried that I could only remember my parents’ *landline* number. I called Mum, Mum called my wife, and I tried to find a spot to sit where my wife would find me (I ended up back in the ER waiting room, and then tried not to look completely nuts to the one other person waiting; my wife found me, but she also ran into the nurse who discharged me, so I could finally commiserate). I didn’t yell at anyone, I didn’t sob, I thought of you, and I got through what seemed impossible in the moment.
Funny thing? I stopped vomiting by the time I was home, and actually felt a bit better. So, maybe it was by God’s leading that I ended up back in my own bed within 24 hours.
Then I had junky lungs, a very productive cough, and extremely disgusting tasting mucus for the rest of January. And that, I got through, with a lot of sleep and reminding myself that you’ve dealt with much worse, and come through it - and that made me feel so much less alone.
Thank you, from the bottom of my heart!
🧡💚💛 Sasha
* - Because the doctor was writing my orders for day shift, and since she had no orders (she didn’t check with anyone, wouldn’t listen to me, just assumed - I still have the scars from where she took the IV out (I can, and have taken out IVs (from myself, with nurse permission), with more care and less injury than that, so…wow)), she sent me home. I’m not great in situations like that - I either get angry or sad or just, completely nonverbal (I’m autistic - severe pain and nausea can just overwhelm my brain to the point that my ability to speak just kinda disappears).
Watching the miracle that is your Trikafta journey is a huge privilege that I never take for granted, Mary cariad xxxxx
Congrats on the stability, I have IPF and my semi annual PFC test is friday. Praying for stability for my self. SO happy for you!
Good luck Kathy
@@reneegoodin1317 Thank you Renee
Kathy...
good luck
Love and light
@@giovannimaisano9194 Thank you
Praise the Lord! Incredible, how stable your lungs are! Hallelujah!
You talking about the valentines cakes 😅🥰 one of the things that makes me love you and Peter
Its technically Mardi gras next Tuesday the 21st already meaning lent
Is starting 7 weeks til Easter already on April 9th...
I absolutely love that you are thriving. 💜 🌹
Glad you are stable that is a blessing
I'm so happy for you and your results! I'm on oxygen 24/7 and my left lung is at only 20 percent. I haven't smoked for at least 30 years. I had a triple bypass in 2017 where I had some lung damage after that. I really have a hard time to do things and I do get depressed a lot!! I'm also so very happy about your trip to Florida and for who you're going to be seeing. I hope we get to see some of your visit, take care love you all bunches!!!
God is AMAZING!
How is it possible that he get even cuter💕
You and Peter have such a beautiful relationship Mary. So beautiful. What an absolutely beautiful family. What courageous people you are and you face life with love and you do so well. So grateful that your lungs are where they are at.
In case you ever get back into a situation where you’re thinking of bringing the bedroom downstairs because the stairs would be an issue, you could also add a stairlift to your stairs, either to keep the bedroom upstairs, or to allow Mary to use the bathroom upstairs. I get out of breath going up my stairs (bedroom and bathroom upstairs) because of weaknesses, and since I added a stairlift to my stairs, it has been life changing!! (I’m 38, there is no age for stairlifts 😉)
That's kind of a great idea to get a chair lifts for the stairs in case of limited mobility settling in can't walk suddenly confined to using a wheel
Chair and getting a handicapped plaguer for your car .. It something to think about in the long run!!!
@@ivark56ofPA definitely! And it’s not at all as bulky or house-altering as I thought it would be. They now make them sleek and the stair steps support the rail (not the wall). I also recommend looking into financial aids to help cover some of the cost (in my case an MS association grant for equipment). Once I had it, I wished I had installed one way earlier
@@marier.9983 Ok that's good to know!!!
The little debbie cakes make great cake pops...they are the best consistency...mash them in a bowl and make the balls...then dip them in melting candy...so amazing...
Wow. I've got tears in my eyes. That cough sounded so deep... so familiar.... yet - you were coughing and still breathing out, I was - hmmm. This is. Wow. That's all. Wow. So heartened. Miracles among us.
Stability is amazing. I’m so happy for you. I don’t have CF but I get regular lung infections, PFTs are so stressful. I’ve had my second infection of 2023 with only 22 days between them. So it’s getting worse with low lung function
Just wow! Incredible that your lungs are so stable at the moment! And just imagine what it could have looked like had you not been dealing with a cold at the time, I can only imagine your results could have been even a bit better if not having a cold or recovering from a cold when you had your clinic appointment. Hope you guys have or had a wonderful time in Florida!
God takes care of you Mary! Thanks, Thanks God, Thanks.
Was the poop in his pocket!!! I can’t! I make fun of the people who swing the poop bag as the walk. It is one of my eeks.
That good to hear that you passed the test that the medication is doing its
Job and not wearing off.. Those numbers from the doctors were accurate
Enough to go on your trip. I think you have the best group of doctors really
Working on your case . I know the crew have a good track record there..
To get you a stable is definitely good news for sure!!!
So very blessed. Love this for you Mary
I’m so glad your tests were good even though your lungs are junky! Praise God!
Praise the Lord! It is amazing. I followed you for years and compared to where you were! Wow! Praises
Good job Mary!🥳🎉🥳 I cried during your CF Clinic because I've been following your channel for years. I see the journey and what a blessing Trikafta has been in your life. God is so good! No more colds for YOU🙅🏻♀ All the best to all of you💕
Praise the Lord.. praying for you!
You got This Mary 😮
I'm so happy for you Mary. I thank God with you for the stability. Month after month Trakafta continues to remove the veil on who God made you to be and all he wants for you to experience.
PTL for the new meds you've been taking!!!! Very sweet HARRY & ELI❤ Lil Debbie------ohhhh soooo GOOD !!!!!!!!!!!!
Praise the Lord for the stability that Trikafta has brought even in the midst of sickness.
Hope u'all had a fantastic trip to Florida🎉🎊
Mary I’m so excited that your PFT were so good for what was going on. Elijah with Harry is very touching. Oh I can appreciate a little Debbie now and then. Hope you all had a nice Valentines Days. ❤
When I first started watching your channel, I think around about 2017, it was in the days where you used to have to brace yourself because going up the stairs would often lead to vomiting. To think of where you are at currently is amazing. x
🙏🙏So so happy for you Mary that your PFT results were good!!!!! 👍👍👏👏
Yayyyyyyy! God is good ALL the time ! 👏🙏🏻😍🇨🇦
That's 100% a miracle. 🙏🏻🙏🏻🙏🏻🥳 That is crazy but such a relief.
Levequin made me hallucinate also and feel like I’m a huge balloon 🎈 & my body was 3x as big as it was plus a major rash
There is something incredible about a CFer; they don’t complain about ANYTHING a normal person would.
Kind of true for sure!!
Glad that you had good PFT results.
Congrats on the stable PFTs!! And Little Debbie’s are soooo good!!
Christmas Trees are my favorite! The tiny green sprinkles on top. I love them ! 8:19
1. Praise God! Holy nuggets, Batman, you’ve got mighty 🫁 I’m bawling over here!
2. So ThAt’s how big a poodle poo is?! Prodigious!
3. Good gracious, the Harry/Elijah moment was adorable!
4. Little Debbies are where it’s at!
5. I love the crap out of you guys! Enjoy your journey! 💚🙏🕊
I forgot this isn’t present time lol! Hope you had a great journey 😂
M so glad your lung function is still good...Thank God 😊
I just had this test, and my lungs are good. Meds are working!!❤
Mary,
No dis respect, I really CARE about YOU and your beautiful family and fur babies..
PLEASE PLEASE wear a MASK in public and protect yourselves and others! Of course your free to do what your want to DO, I'm just worried! ( hugs).
Love and light
Priscilla
I have major heart & lung disease and not being able to breathe is scary and I’m in a wheelchair. I have had Levaquin and it worked on the infection in my Mechanical Heart Valves but had to take 2 prescriptions and boy it made me nauseous 🤢serious headache and my bones were on fire. I couldn’t eat or even get up an sit in my recliner. I also had night terrors, but it saved my life. I’m getting some kind of infection again and I’m on 3 Antibiotics this time but it’s not really helping and it’s my second round. I don’t want to go to hospital but I’m getting to the point I’m going and back on Levaquin🥴added to what I’m already taking. I’m considering getting my pacemaker and defibrillator taken out because I been doing this since 2017 Open Heart Surgery and I’m 64. The coughing actually has made me pass out. I’m really just over all of it. I like Little Debbie’s some of my students use to bring them and it’s University…I miss working and just walking. I have been so happy for you improving health and Elijah is such a blessing❤Be safe and healthy to your whole family 🌹
Little Debbie’s the best!!❤❤❤
Yay for stable lungs. My are stable too from asthma. Celebrate good times come on its a celebration. I grew up with Liitle Debbie the chocolate wafers. So cute how Elijah loves Harry and said meow God bless.
At Christmas my 5 yr old granddaughter came to my house, which is across the street from her’s, and she was so excited that her mommy got her and her brother “Christmas Pastries” for after dinner! I went to have dinner with them and when they finished their meal she jumped up and ran to get her pastry. It was a Little Debbie’s Christmas Tree cake! 🤣We laughed so hard because she thought it was the most fancy special Christmas Pastry ever and had me expecting that too. She’s such a hoot! Nobody in this family is too fancy for a Little Debbie’s snack cake😂❤
Praise Jesus for your miracle❤
So happy for your results!! I love watching your seasons!!
I'm so grateful along with you!
We love the seasonal cherry cordial Little Debbie cakes. ❤
So glad you’re doing well.
I loved little Debbie's Christmas trees. And found they made it in ice cream for Christmas. It was delicious!
As a sufferer of lung issues,,,asthma/COPD/Bronchietasis,,,my doctors/pulmonologist and repiratory therepist that are caring for me are rather perplexed because I show signs of having all 3 of these conditions,,,,,,I am so glad to hear your are holding your own sweetheart you deserve at least that good news, hang in there girl you have many good years yet to come,,,I turn 57 in a month and just 2 days ago I had another PFT and I'm holding my own (no better no worse than my last PFT a year ago,,,,even though I got to spend a night in the hospital not long ago because of respiratory distress because of my issues),,,,,and now the doctors are trying to help with my mucus/phlemg problem a bit more also,,,,,,so glad I found you guys channel not long ago (couple months ago when I was in the hospital ) because it helps to know you're not alone in the battle,,,,wish I was there for that extra shoulder for ya to lean on when needed for you,,,,but know that I am there in spirit all the way for you and that great guy you are married to can be that shoulder,,,,Peter seems like a really great guy,,,,take care and keep up the fight,,,,and take good care of that baby boy.,,,,oh and I would love to have little Debbie snack cakes but my doctor would porbly want to or possibly just punch me because we just got my bad diabetic numbers under controll,,,so be carefull not to overdo it and enjoy them for me LOL.
So happy for you Mary!!
Speaking to the choir about Little Debbie's. Have always loved those.
Hi! Love your videos. Positive vibes sending to you and your family.
You are truly blessed God keep covering Mary in your grace love and the blood of Jesus amen
Sending so much love to you all!
Those holiday variations of Little Debbie cakes are the best 😋!!! I would rather have those than any expensive dessert. I seriously think I need to go to the store right now, lol.
Sending you some love, Mary 💛💛💛💛💛💛💛💛💛💛
All of you ! 💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛
I love Little Debbie snack cakes. My latest addiction to them is the strawberry unicorn cakes. The strawberry isn’t too strong it’s just the right amount of flavor.
Oh boy those lungs are playing tricks. I was blowing right along with you. I’m glad you are going to Florida without worrying about this. I’m from SC in Phoenix now for 5 yrs. I hear it’s cool to cold that way so take warm cloths in case. But I hope you won’t need them. Enjoy your trip
Enjoy your trip!!
That's amazing deary.
Omg I'm so happy for this happy news! ❤️❤️❤️❤️👏🏽🙏🏽
Harry and Eli are so cute together
How wonderful! ♥️♥️♥️♥️
I’m team zebra cake too! I can’t have them any more with a wheat intolerance. But they still hold a place in my heart.
I would think the coughing during the PFT would interfere and would make it inconclusive
If would affect it. She was coughing as she was blowing out. I do PFTs. She failed the first attempt. And, did four attempts. I can't imagine coughing like poor Mary is and sounds breathless and would be "stable" whatever that means to her. Cipro..nooooooo.
Glad you’re doing so well!!!! Little Debbie’s need to make a shamrock cake for St Pattie’s day now!!
Praise GOD!!!
We have those Little Debbie snack cakes to they are, nice video happy Wednesday love from Canada 👍👍💕💕🙏🙏❤️❤️🤗🤗🇨🇦
My cousin was able to get in the same medicine and doing much better too. And her son is growing like crazy. He was a preemie but healthy. She did give birth to him. Her miracle baby. But yeah she’s doing so so much better on the medicine you’re on. What a good drug that came out of trials. I’m so glad she was able to get on it. She’s even gained weight she needed.
LOVE Little Debbie cakes and Im 67:-). So glad your lungs are doing well.
Good job, Mary! I see you are focused. I do the same.
Yaaaay for the miracles❤❤❤❤❤
P.S Ollieeeeeee🤩🤩🤩🤩
We can’t let little Debbie’s here in Canada any more. I do miss them.
So glad that you had stable PFT numbers. They do know, it’s also funny how we know. I always guess my numbers and I’m usually pretty close. I know if it will be worse or same. My last ones have been trending down and in the 50’s.
Strawberry cakes are the bomb as well!!!😊
Wow, such great news! I was laughing out loud at your Little Debbie shout out. I'm a frosted fudge cakes girl myself. I probably haven't had them in over a year. It's now on my list, you should be sponsored by them. HaHa
Omg...when you were describing the Little Debbie's I said with the waxy frosting at the same time. 😁 PFTs are so hard and I can't remember the other one some titration test was even worse for me.
Heading your way tomorrow to the four seasons super excited hope there is an affordable store for 6 week old girl jeans 😊👍 also have low immune praying for a healthy trip for 1 day trip as well 😬 and diabetic gastroparesis hopefully I can do it 😊
"Give your head a wobble" as we would say. I like the honeybuns. We can't get them in the UK
Great news all around 😉👍
Thanks!
Thank YOU!
Blessings!!!!!🙏🏼❤️