First Dose of IVIG in 15 Months | Home Infusion 🏥
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- čas přidán 7. 02. 2021
- [Vlog 2.5.21] - Restarting Intravenous Immunoglobulin Replacement Therapy
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Port accessed ✅ pre meds taken ✅ IVIG infusion ✅ zonked from benedryl ✅✅✅✅✅ 🤣
I remember being zonked from Benadryl a month or so ago. I had to take two because I ended up having a bad reaction to something. It made my back brake out in hives and itch so bad. So thankful for it because hydrocortisone didn’t work. Always have Benadryl around because my mom is highly allergic to avocados and I sometimes have allergic reactions to random stuff.
Lol.. Lego in chest!! Lol they almost made it in your armpit mary!! I tease fhat I have a 3rd nipple.. my mom was like Katie, do not talk that way I raised you better than tbat.. so I corrected it to my 3rd areola.. I have a duel lumen port so that changed the name lol.. I have yet to name this port
You did iiiiiit. 💪🎉 I am so proud of you! And though everything is different and that's hard, hallelujah ivig is back! May God bless you immensely trough it!
lmao!
Show us you nebulizer pls
Oh Mary - now I've got "I aint got no needle in my chest" going through my head over and over again. LOL
I sing that song in my head every time I deaccess my port
Hi Mary,
Thanks for sharing your story w us.
My niece had CF, and ended up having a double lung transplant at the age of 25.
She taught me how to live EVERY single moment!
I loved that girl so much.
Unfortunately, her journey here on earth came to a close in 2014, but her Heavenly journey started then.
I am now dealing w some health issues & will be starting IVIG treatments in the next couple days. Praying I do as well as you did.
Take good care, my friend. ❤️🙏🏽
Singing with you! “With every breath that I am able…” 😭🙌🏽
Martin, the pups and I are cheering for you, Mary! xxxxxxxxxxxxx
It’s been a while since I’ve watched a video. But i watched this and it’s taken me back to my girlfriend and listening to her breathe and struggle. The raspy sound of her voice. She’s no longer with us. But your video brought her back for a moment. Love to you all.
Well done guys. Your faith causes me to pause, Mary (you too Peter, just Mary is in the light at the moment.). I have stopped a few times recently wondering just how strong the faith in me is. When I am tempted to fear weakness, your example returns. God love and bless you. Keep on keeping on!
The Frey Life oh my goodness the wife can sing wow i have tears running down it was so pretty !
So glad that all went well with your IVIG infusion, Mary. Great job! Homemade turkey salad.....yummy 🤤😋 Also, your turkey dinner looked so delicious! I hope that the effects of the Benadryl helped you have a good nights sleep. Much love to you, Peter, Ollie, and Harry 🤗❤️❤️🙏🏼😘🐱🐕
I love watching your vlogs & shopping on your online store! I also have Cystic Fibrosis and you inspired me to start my own channel. Thank you!
Thank you for always being faithful and showing your courage. When I face a test at the dr. I watch you for encouragement. My go to is ( I won’t let you take my joy)!
I’m proud of your bravery and perseverance Mary! 💪❤️
Hope youll continue to have good days like this with your new routine & situation. Your turkey salad and all the yumminess warms my heart everytime🙂
Man that food looks great Peter, just love your vlogs , Ollie, Harry, Mary your very organized I love that about you, Have a great week 😻🤗👍🏼🙏🏼😃
You are doing so get mary . I am so glad you guys are staying healthy and safe ❣️ . Sending love and hugs, prayers your way
U did it, you conquered, it happened!!! And I was amazed at how energetic u were afterwards!!! U rock guys!!! Whoop whoop!!!
You handled your I.V. like a boss, Mary - and it’s hard to fight sleep with the Benadryl. I bet you will both sleep well tonight and better day tomorrow. (I think Peter is the best support you could have - none better!) ❤️🇨🇦
My sister has lupus and she is having a hard time. I been watching you for years and i learned fron you to not frustrate for what you can't do be proud of what you got don.
I have lupus and wegeners vasculitis attacking my lungs caused nodules, extensive scaring and ground glass opacities
@@ServiceDogRosie I have SLE. I'll be saying a prayer for you. Feel better, warrior.
Mary is a really good singer!! And COOK!! Actually both of you are exceptional cooks. See you tomorrow! I feel JOY when I see the two of you and how you interact ❤
That dinner looks so yummy!! What a grand meal to celebrate a successful home-nurse visit!
I love the song that Mary sang in the car. My church was singing that song at the praise time on Sunday.
Loving the vlogs keep it up Mary and Peter
You guys are so sweet and Mary you have a lovely and very clear voice :) lovely to hear you sing:)
So glad that you got the IVIG thing sorted🥳
Thanks to your lego in my chest video when I modified a teddy bear for my daughter to have a port, ostomy and G tube I used a lego for the bear's port.
Glad you made it through the infusion. Sorry it had to be that way. I just picked a Sam’s rotisserie chicken carcass and will be boiling it down for soup. Can’t wait!
Mary you did it ,I am so happy everything went so well ,I see you are very organized with your bin and that's great 💖so happy you made a lot with the Turkey and your bone broth is fantastic 💖dinner looked delicious Peter did great with the cranberry sauce ,have a blessed evening hugs from Florida 💞🌴🌴
your home is so cozy, i love the style you have :)
I love watching your videos every day
Love you Frey Fam 💜💜🐾🐾 Yummmie food Mary its 4:40pm and I’m starving all looks delish
Im always intrigued by your soups from misc. vegies and refrig. stuff, that i decided to make, from scratch, veg. beef soup this weekend. A LOT of work, but it turned out okay, 7 out of 10! Thanks again for inspiring!
We have to go into the hospital every month for ivig for my daughter, and they always have to change the rate manually also. I wish it would be automatic! Not that it would be a huge difference, but it would save a bit of time!
I started IVIG a month or so ago and it helped knowing about your previous experiences with it!
Lego in my chest was my first video :D ever since then, I have been watching you!
That turkey dinner looks so good. We still have some in the freezer. Maybe we could have a full dinner like that. You made me hungry for Turkey. God Bless. 😁👋💖
I love your new floral hoodie Mary 😍
I'm so happy you got your ivig! I hope you're doing well today.
May I ask that the screen with Ollie at the end be a little larger please? I have vision problems and it's not easy for me to see.
Thank you for considering!❤️
The cardboard cutout at 2:01 🤣 but on a serious note you two are such amazing people and I adore both of you so much 🥺💗
Love them both so so so so much
Me, Too
Me too
Hope you're doing okay today! I can't stand it when my needle scrapes. I have a teeny port so yowch. But I love that you have it for the Christmas tree!
I completely forgot about ivig. You go girl 👏
Your meal looks delicious!!
The turkey dinner looked very good you guys are great God Bless
I was watching 5 feet apart and just thought I would check on my favorite CZcams or with CF
I got those mini pitas from Aldi at your recommendation and they're so good!
Hey Mary and Peter, as someone with Chronic Illness and severe fatigue, I wondered if you might talk about how you clean/take care of your home with Illness? Any tips or tricks??
Every time I hear songs like that on the radio ("Goodness of God"), I sing it loud and proud until I can't anymore because I'm crying too much. Lol God Bless our unique CF lives!
I had to do IVIG for over a year after my second transplant because I got too much BK Virus from the donor's lungs. My needles would often scratch against the back of my port making a "nails on chalkboard" effects that would send shivers down my back... Probably because I am very thin so even short huber needles seem longer.
I love Ollie too
Good job Mary. I know this was not an ideal situation. It is done for another 3 week 🤗🙏🏻
Your meal looks amazing.
One day at a time.Mary what recommendations do you have when it come to PPE for those of us who have chronic illnesses?TIA
You did it!! Ivig accomplished 😊😊
I think you are very brave.
I love the yellow top!
Just you and Peter singing a religious song makes me know the baby will grow up to be a good man.
How many week does the nurse ivig need to come out un till you and Peter can do ivig on your own
Mary could I please please ask you a couple of questions about the port, I’ve just had mine put in. Was hoping you would have some tips please. Thank you so much for in lighting us. Xoxo GOOD LUCK WITH YOUR TREATMENT AGAIN!! Hi Ollie and peter
My new pump does the rate changes but no beep so time it. My last pump my nurse had to dose increase every time change.
Hi, so glad the ivig is done! Congrats! And I love that song about the goodness of God. Just FYI the new intro does cause me some brain trouble with flashing fast images..I had a stroke,and now with this intro I have to be careful to cover the screen completely till it is done.
Last time I made broth, I froze it in ice cube trays. Some recipes just need a little broth, so I pop in a cube or 2! Your bone broth turned out awesome!
I feel for ya! I used to have monthly ivs that lasted 8 hours, then switched to one that was 6 hours! By the time my arthritis was in remission, they were down to 4 hours! The Benadryl was the worst part!
I had a satisfying grocery haul today . Got 18 leg/thighs for 5.19 and a bunch of giblet pkts for the dogs for 1.00 each. A lot of whole wheat buns for 1.00 each as well so most things I got for 50%off. It's usually the way👍 satisfied with my so far part of the day too.
Your dinner looks amazing
Will you have to have a nurse come out to your house each time you have to do IVIG now that you're living in NC? Since I'm assuming protocols are different there in NC from Mass?
Whatever came from Harry's cardio consult? Other than you mentioning "picking up meds for Harry," I never saw or heard anything on the previous videos.
Love bone broth! Anything you freeze should be in glass. Plastic can leach into the food...just a suggestion 🤍
Loved the singing in the car. I will sing of the goodness of God.
I am so glad your transfusion went well and the first is behind you now. Do you use a Huber needle when you access your port? I am a retired OR nurse and just wondered. I also wanted to tell you that I loved hearing you sing a small portion of The Goodness of God. I moved from Ohio to South Carolina a little over 18 months ago and do not have a new home church because the pandemic started soon after getting here. And I feel lost without any Christian fellowship. When you talked about your zoom meeting with friends for a devotional time I was so jealous. I would love to hear any suggestions you have for a widow woman all alone and pretty much quarantined because of health issues and my doctor not wanting me to go out and about much. Had I know this pandemic was coming I probably would not have moved when I did because all my friends and family are in central Ohio. I would covet any prayers because I am going through some tough times. God knows my needs. I love your videos and pray for you all the time.
Hi Nancy, gentle hugs I’ll pray for you if you like. I’m quite isolated for lots of reasons chronic illness related but I love praying for people. I’m rather technologically inept but I can probably find a way to keep in touch if you’d like? Regardless I’ll be praying xo
I saw you had just one epi ready? Epi’s sometimes malfunction (or people need more than 1), so it is always recommended to at least carry two. Please discuss this with your doc
Well today seems like today you concurred it all Mary. As usual you're food looks delicious. I got my new nebulizer last week. I have been off of it for a year since my broke. I'm on steroid inhalers that help keep my Asthma lungs open. Thanks for sharing you're day god bless.
Do you guys have like a spotify playlist of the songs you love? Sometimes I listen to the songs you play in the vlogs and would like to hear more!
They made a CZcams playlist of some a few months ago! I think it's called songs of hope or something like that
Are you thinking about SCIG instead IVIG? It would give you more autonomy.
what is in her chest is there a inplant on it?? and what is that use for??
Is the OLD PORT still a Christmas Ornament?
What is the reason for IVIG treatment?
Why are you going back on IVIG? What happen with the Hizentra?
@@astridroseby I had never even heard of subcutaneous IVIG until I saw Mary doing it. It does sound painful! I'm glad I did the IV version when I had to do IVIG years ago.
Why do you have to take Benadryl with it? And, why back on it after 15 months?
Idk what nebulizer you have show us pls
Benadryl has the opposite effect on me, I feel agitated and restless, I don’t take it .
Me to!
It makes me sooo jittery. I had IV benadryl once and almost ripped the IV out. I wanted to ripped my skin off
Me too! I get horrible dystonia
I got a bit of that sometimes before switching to preservative free IV Benadryl. Now I don’t
6:54 wow
Hi Mary and peter
❤️❤️❤️❤️❤️
The benedryl hangover is the worst. I have Mast Cell issues and use high doses of it for reactions and the feeling is awful.
You should make a turkey pot pie!
In Germany we only use Benadryl as sleeping pill. I can Imagine how drowsy you must feel after it.
It's used an antihistamine primarily here in the US.
@@simplyfreedom171 Its the active ingredient in NyQuil and other otc sleeping meds.
Also in Tylenol and Motrin PM and most OTC sleep aides
What is IVIG and what is it doing for you?
So glad it wasnt really stressful for you treatment hopefully in time they will allow you to do it yourselves
I donated platelets this same day.
I always love when you sing. Its so up lifting. I remember the days when you sang you didnt have a needle in your chest. So happy those days are alot less. Have a great day.
Is it Ivig or svig?
Hi Mary peter ollie harry. Awesomeness
Are we not going to mention the friend we have in the medical closet or???
i was looking for a comment about this.. like hello!! how do you miss that.
I was coming here to say the same thing. Why is there a cowboy in your closet, Mary?! hahaha
Haha!
I didn't notice him in this video ( I was multi-tasking), but he did make an appearance in a recent video...maybe the one where she reorganized her medical closet? I was so happy to see him again.
Anyway, that's Pedro...or Pablo?
Dang, I forget now.🤔
But he goes WAAAAY back.
😄😄😄😄😄
My cousin got new lungs and she has cf For when she was a little kid🫁👏😇
People are born with CF, it is genetic. You don't get is as a little kid... But childhood is when many begin to experience the effects of the degenerative disease. I think that's why so many people think it is something that is contracted during childhood.
Hi
Benadryl makes you sleepy? It makes me zoomy, I really hate the feeling
Benadryl knocks me out
If I take 1 benadryl, I'm knocked out for 12 hours!
I also get zooms. And want to rip my skin off. It’s not great
😴SWEET DEAMS😴
You guys make the yummiest meals!
How bout that game last night!
Who is the Creepy guy hiding in your Medicine Closet LOL