I’ve been working for an immunologist for 6 years now and I always tell my patients to premed with 25-50 mg Benadryl and 650 mg of acetaminophen 30 mins before infusion. Some add in prednisone or medrol as well as anti nausea meds. Pre meds are important and i’m glad you continued with them. Acetaminophen helps with the headaches, muscle soreness/ fatigue and overall yucky feeling. You can repeat every 4-6 hrs as needed. I hope you also have Epinephrine on hand for reaction.
My brother has done sub-Q IG for 10 years now and it has been his saving grace! He suffers from an autoimmune disorder which caused him to develop Autism Spectrum Disorder. We started with IVIG, but because of the frequency he had to do it his veins started to blow out. As far as sub-Q IG goes, we do pre-dosing with Benadryl every time to prevent reactions but we've been able to decrease his infusion frequency to every other month. It all just depends on how your immune system is. We've also found that doing four sites helps decrease the swelling, helps keep the fluid in afterwards, and makes it faster. Anywhere you have more fatty tissue is a good spot. Alternating helps when you're first starting but isn't a must. I'm glad your first infusion went well!
I've watched you for years, and you're honestly still as strong and motivating now as you were when I first started watching. You're both an absolute inspiration!
Thanks Sam! We're so glad that we can be a source of motivation and encouragement to you! We're so glad you've been a part of our Frey Life family the past few years, thanks for joining us! :)
I am a nurse and I need Mary to come to the hospital I work at to organize our store room...she would do so much better than the people who have done it :)
glad the sub-q IG went off without a hitch for you, Mary! and Peter, that yard. You have done an amazing job!! You guys have a beautiful home and yard! so happy for you both!!
Thank you for this Mary! My mother is waiting for ins approval to switch to sub q at home, instead of IVIG at the hospital. You taking the time to share this helps us, and so many more patients and their loved ones.
Like the nurse said, Mary, you’re a professional! Peter, what a hard worker you are! How do you know so much about planting grass? And putting in a drainage system?You seemed to have ordered the right amount of dirt...you’re a professional too...landscaper!! 👏
I love this so much!! I lost my medically fragile daughter in October 4 2019. She passed away from JEB ( Junctional Epidermolysis Bullosa) My everyday life consisted of J/g tube feeds and meds and Picc line meds so this brings me back to mine and my sweet Avery’s normal!! Sending you all so much land butterfly kisses!!🦋💜😘
Ksilva920 sending you hugs! I'm so glad we can bring you along on our journey and that the vlogs bring back memories of your wonderful kido 💜 Thank you for sharing that with us! We are so glad you're here :)
Good job, Mary! Piece of cake! 👍🏻 The backyard is really taking shape and is looking awesome, Peter! Pretty soon you will be hearing little baby birdie chirps yelling at their mom for worms. Have a blessed day! 🤗❤️❤️🙏🏼😘🐕🐱
So it’s been a while since I’ve watched you channel (I live close to where you lived in Massachusetts) and it’s been a while since I’ve watched. Today, I was feeling a little down and your channel popped up because I’m a subscriber. THANK YOU!!! I was reminded to “laugh everyday” and enjoy the little things! It was the exact reminder I needed! It was the reminder I needed! You guys are amazing! Thank you for the reminder!
glad it went well for you , my son had a horrible allergic reaction too it but had 7 needles at once 2 days in a row starting out, and peter is amazing at that yard work , its looking like a piece of heaven
I’m amazed how much of your medical care your able to do at home, this would never be aloud at home here in Canada like ever, but I think it save the medical system so much money and empowers patients to take care of them selves with guidance of your medical team
Thats the same thermometer I use to check my temp. Its a good one I like how it has the green, yellow and red color for okay, low grade and high fevor. Also lobe the creative wrapping paper.
Great job Mary! It probably is easy for someone with your experience but it’s still amazing that you handle so much of your own healthcare. The yard looks awesome! That’s called sweat equity and it makes your property more valuable right away. I bet Peter sleeps well at night! That kind of work makes you feel good in body and mind. Love to all!
Mary I'm watching you prepare for the Nurses visit, and I have to say this isn't the first time I've thought this! I think you would make a wonderful Pharmacist. In fact, I'd go so far as to say you would make an amazing Nurse! You already have the base/intuition, generosity of spirit and compassion which in part makes a wonderful Nurse. I'll say when rather than if you're finally well, please consider this professional route. You'd be amazing! 🙏❤🙏
Thanks for the video. I am considering SQ for my infusions in the future. I have been doing IVIG in clinic settings for 13 years. The mistakes with the nursing staff over the years have been many. I do have a port, my second one. The dosing is my only concern. I have CIDP and my IVIG dose is .5 grams per kg every 3 weeks. You make it look easy. With home SQ the mistakes from nurses will be eliminated. This is my main motivation to go to home SQ. Your video is very informative. Thanks again.
I love to use my empty alcohol swab, nebs, gauze etx boxes to put all the little like things all together. We could probably spend an entire week doing this and it be the best week ever!!!! The simple things!!!!
I haven’t finished the video yet, I just had to stop in and tell you two that it’s good to be back! I’ve missed you both, and your kids too. :) Ok, back to the vid. Definitely have some stuff to get caught up on.
My mom loves u and she has ivig a port and we love U alot u dont know how much we love ur family :) IM A BIG FAN 😁 im gonna be watching u evreyday and commeting :D KEEP UP THE GOOD WORK WOO HOO ❤💕
Congrats on your first SubQ IG! 🌸I’ve been doing it every week for for the last 2 years! I have always done my stomach, i have recently thought about doing my legs but for some reason so nervous 😊🙃
The Frey life thank you so much it’s a lot harder on my dad it’s to much on him. My dad is the oldest out of date. Which is she’s got a lot on his mind right now. I want for us to take him because of this whole pandemic. Thank you so much for praying guys I do appreciate it. Blessings to you both
I meant he is the oldest out of eight and it’s very hard on him but yes hard on the family too so sorry for the mistakes I’m using Voice to text and thinks it knows what i want to say. Which in theory it does not 🙄
Hey, doing this three times a week with 50ml. But my pump is not so big as yours. Sometimes I got heavy bone and jointpain from that, but it's better than sitting in a wheelchair. Good luck and much less sideeffects ! Greetings from Germany
My husband does the IVIG, Once a month, two days in a row. Today and tomorrow is his treatments this month. He goes to Buffalo, N.Y. to have them done, it takes almost 3 hours each time. He gets TIRED and BLAAA for a couple of days, that's why he does them Thur.& Fri. So he has the weekend to feel better before work on Monday. They sometimes work and sometimes don't, and the relief doesn't last long. The leg, arm and hands aren't so crampy. And his legs feel stronger, BUT... it doesn't last. He's only been doing them since January. He may have rejust his doses or strength, It's trial and error. The yard looks just AMAZING !!! UNTIL next TIME 💞
Thanks for the demonstration Mary! I've always wondered how subcutaneous infusions work in people. I'm used to veterinary medicine . Animals, dogs especially, have so much loose skin, you can just pull the skin up in a little tent and there's plenty of space to inject/infuse into. But our skin is stuck to the underlying tissues so I've wondered how they even know if they are injecting subcutaneously or intramuscularly. I feel silly now, I guess it's pretty obvious 😄 Good to see your body tolerated the new Ig treatment, hope the injection sites aren't too sore!
That pocketing happens to me with my insulin sometimes. It feels full or heavy for a while after but it does go away. Once in a while it will bruise afterwards but not a lot . You did great with the stabbing!!! Very impressed!
Congrats Mary & I’m glad you can switch to injection rather than infusion so you can keep your independence. As a home health nurse myself I always tried to reassure the patient that I wasn’t there to change their routine. If for some reason I had to go into the home I would make sure they knew that I would follow their routine to the best of my ability. I’ve never dealt with IG except to get a dose when my brother in law got sick & we had to take it in the rump!! So watching the video will be interesting. Loved your wrapping paper idea. What more fitting decoration for a caregiver’s present then a bandaid? I’m wondering what you were shooting for when you made the stamp? Hope you’ll share a few minutes of the babies often.
My home nursing company brings all the pre-meds and supplies like Tegaderm with her. Just a heads up, you might not have to buy all those supplies yourself, the specialty pharmacy might provide them when they ship your infusions. Also, check for copay assistance if you're low income.
I would always have to take Benadryl before my chemo and I just hated the way it knocked me out. I know just how you feel Mary. Peter, the yard looks Amazing. Really beautiful. Great job. And the little eggs are oh so cute. What kind of bird are they? I presently have nesting on my house junkos, doves, and robins. Yesterday I just discovered a new mud nest on the far side of my house. Not sure what kind of Bird.
Ask the doctor if you can predose with a 24 hour antihistamine the first time they say you don't have to take benadryl. Most 24 hour antihistamines can be take with benadryl so if you start to see a reaction you can still take the benadryl. Just a different type of precaution that shouldn't make you drowsy for your first non benadryl sub q ig
I have to give myself 3 shots a day in the upper side leg, fatty part on the side of the arm, well..all the place’s you have to. My needles are 27G x 1/2. Don’t know what your needle size is but if you hit a little artery or vien, oh how it burns. It took me a while to find the sweet spots. DONT do under your arm, do side lower part. The fatty part, try that as it hurts the least I think. The side, well...ya have to fine where it doesn’t smart! I have to go back and get caught up to see what going on here with you now..sorry I’ve missed them. xoxo
When I did sub q I did 4 sites each week so my “bubbles” were not at big and sore. It took my 1 hour to infuse. I had to go back to IV as subQ was not covering my brain.
Hi Guys , I am glad all worked out a-ok Mary of the new way of doing it . It seems like it might be easier , I hope so . Wow , that backyard is truly become amazing. Thanks for the video , and stay safe !! , take care , Gary
I’m curious how you felt about it? I do subq 2-50ml syringes through the pump with 4 needles once a week too. I usually do the back of my arms and belly. It’s better in the fat! You don’t have much of that lol my thoughts are muscular so it seems the needles hit harder! I do this by myself now with a buddy to help. You got this! 👍🏻 ❤️ lots of love from Marci in Mass ❤️
I'm so glad it went well for you!!!!✨😁 Congratulations on learning another thing you can do yourself to keep independent. I hope the swelling has gone down.❤️ Also, I'm SO EXCITED about those baby bird eggs!!!!🥚🥚🥚🥚🌷🌷🌷🌷 Wooohooo!!!
Whoop whoop 💪🏻 You are soooooooo brave! I’m a fellow medical nerd but also not a fan of needles if it involves myself 😳 and especially when it is something new 😐 Something completely unrelated to today’s volg: I really don’t know why this song (Me and Mrs. Jones) came into my head, I really can’t remember when I heard it, it must be so many many many years ago, that’s for sure. But I recently discovered your UA-cam channel and I am watching a lot of your ‘old’ video’s. And our poodle Dora was watching with me, and she was looking at Oliver in such a sweet way. And what popped into my head was 🎶 Me and Mr. Bones We got a thing goin’on🎶 and I is just this part of the lyrics, and I don’t know the rest but I was like 😂🤣🤪🤓🙈 I hope it makes you laugh 😅 I really want to thank you and Peter. I don’t have cystic fibrosis, but other chronic illnesses. And it is not only fun to watch your video’s but also so helpful! In so many different ways. How you handle it alone and as a couple, how you try to laugh every day and stay mentally/emotionally sane. How you communicate with doctors (or doctors to be). How you organize, in many different ways. How you travel. How you go out together. What emotions you are going through and why. And the list goes on for me. I laugh and cry a lot for many different reasons, sometimes a lot, sometimes a little. It feels a little bit weird (and slightly creepy 😉) to say but I recognize a lot of myself and my boyfriend (oh I feel so young when I say that 😂 (33 🤫)) in you and Peter (separately and together as a couple). And that helps even more. I am SO grateful for your Vlogs. Especially because It can be so hard. Even though you are an extrovert, it also takes guts to vlog if you ask me! (The funny thing is, when I became chronically ill I became more and more of an extrovert). And last but not least; how cute is that birds nest!!! 😍 XO Ismay, Wessel & 🐩 Dora from the Netherlands
Ismay, Wessel & Dora thank you so much for those kind words and sharing how our vlogs have been a source of encouragement and joy for you! We are so glad that you are a part of our Frey Life family and that we are able to provide moral support to you via the vlogs :) Keep on pressing on friends!
I hope sub q works for you. My body was able to tolerate that as opposed to ivig which I do now. My insurance won’t cover sub q anymore so I’m stuck with ivig and the side effects. Love your story. If I ever need to reset mentally or get positive perspective I watch you and am thankful for what I have rather than what is going wrong
At least you can do it yourself after this so if you need to continue to pre-dose with Benadryl you can do it in the evening and you might not be quite as zombie by the time you wake up in the morning.
For IVIG, how about a pre-med/pre-dose second-generation antihistamine (non-drowsy) instead of a first-generation (drowsy) one like benadryl/diphenhydramine? For IVIg I pre-med with a 2nd-gen non-drowsy antihistamine, either cetirizine or loratidine.
If it hurts your stomach or wherever you put it I would grab a blanket or a pillow for pressure. The first couple months of it is going to be rough but then you will be fine doing it. I do subq immuno therapy for my common variable immune deficiency.
Wow doesn't look like the same yard! Mary the concentration matching game you showed on one of your videos a month or so ago with the different types of birds, can you tell me the name of it and where you bought it please?
Ok Frey Family. My mom and I are big Frey Life watchers since 2015. My mom got pneumonia (no u.s. covid test at that time). In Jan. And her heart was never the same. She had open heart surgery yesterday May 6th 2020. And in a lot of hospitals near Seattle there is a no visit policy and we are all in Stay at home order, so alone ... She is still on open chest mang. and in the i.c.u. and we don't have an idea yet if she will bounce back from this 😢. If you could lift up prayers to Katies mom? It would be very appreciated.
I completed my first dose of sub Q IG 🤜🏻🤛🏻
Yay!
Yayy im a huge fan!!!!!! :)!!!!!
that looked very interestingsorry for my English spelling im french
The Frey Life Sending you good thoughts as you go through this journey.
Way to go girl!
I am a nurse learning how to provide this service to people in their homes, so thank you for this video.
I’ve been working for an immunologist for 6 years now and I always tell my patients to premed with 25-50 mg Benadryl and 650 mg of acetaminophen 30 mins before infusion. Some add in prednisone or medrol as well as anti nausea meds. Pre meds are important and i’m glad you continued with them. Acetaminophen helps with the headaches, muscle soreness/ fatigue and overall yucky feeling. You can repeat every 4-6 hrs as needed. I hope you also have Epinephrine on hand for reaction.
Thanks Leslee!
My brother has done sub-Q IG for 10 years now and it has been his saving grace! He suffers from an autoimmune disorder which caused him to develop Autism Spectrum Disorder. We started with IVIG, but because of the frequency he had to do it his veins started to blow out. As far as sub-Q IG goes, we do pre-dosing with Benadryl every time to prevent reactions but we've been able to decrease his infusion frequency to every other month. It all just depends on how your immune system is. We've also found that doing four sites helps decrease the swelling, helps keep the fluid in afterwards, and makes it faster. Anywhere you have more fatty tissue is a good spot. Alternating helps when you're first starting but isn't a must. I'm glad your first infusion went well!
Omg I am so happy that you have a birds nest in your hanging basket. It will be amazing to witness the baby birds grow up and then fledge
Thanks Nicholas I am so excited! :)
I've watched you for years, and you're honestly still as strong and motivating now as you were when I first started watching. You're both an absolute inspiration!
Thanks Sam! We're so glad that we can be a source of motivation and encouragement to you! We're so glad you've been a part of our Frey Life family the past few years, thanks for joining us! :)
The vlog was just what the doctor ordered.
You did so well Mary - yeah!!!
Today's recap emojis
🎥🌍👩⚕️🥔💐🍝⚕️😷🌌🐾👋
Jon K lol and 🐦🥚 😁
I'm enough medical nerd to enjoy a blue band aid wrapping paper, wish someone could do it for me ;)
I need Mary to come and organize my closet and such.
Laura I would love Mary to come and show me how to cook and prep🤗
I am a nurse and I need Mary to come to the hospital I work at to organize our store room...she would do so much better than the people who have done it :)
I love you Mary. Thank you so much for excepting me for who I am and being a good friend to me. Hugs
glad the sub-q IG went off without a hitch for you, Mary! and Peter, that yard. You have done an amazing job!! You guys have a beautiful home and yard! so happy for you both!!
Thanks Lori!
I'm so glad the medicine went well. The backyard is looking great! Isn't it exciting to know you're going to have new little baby birds!
Thanks Danna! & I'm SO excited about the baby birds :)
Thank you for this Mary!
My mother is waiting for ins approval to switch to sub q at home, instead of IVIG at the hospital. You taking the time to share this helps us, and so many more patients and their loved ones.
Like the nurse said, Mary, you’re a professional!
Peter, what a hard worker you are! How do you know so much about planting grass? And putting in a drainage system?You seemed to have ordered the right amount of dirt...you’re a professional too...landscaper!! 👏
Thanks Glory2Jesus!
This is completely off topic but Mary’s face is so unbelievably symmetrical! She’s so pretty and positive!
Wow that backyard is looking so nice! Your hard work is paying off Peter!
Thank you Kimberley!
I love this so much!! I lost my medically fragile daughter in October 4 2019. She passed away from JEB ( Junctional Epidermolysis Bullosa) My everyday life consisted of J/g tube feeds and meds and Picc line meds so this brings me back to mine and my sweet Avery’s normal!! Sending you all so much land butterfly kisses!!🦋💜😘
Ksilva920 sending you hugs! I'm so glad we can bring you along on our journey and that the vlogs bring back memories of your wonderful kido 💜 Thank you for sharing that with us! We are so glad you're here :)
Watching your videos are always so uplifting
Good job, Mary! Piece of cake! 👍🏻 The backyard is really taking shape and is looking awesome, Peter! Pretty soon you will be hearing little baby birdie chirps yelling at their mom for worms. Have a blessed day! 🤗❤️❤️🙏🏼😘🐕🐱
Awe thanks Holly!
I’m so thankful that your SCIG went well and safely xxxxxxxxxxxxxxx
Peter, the yard looks great. Mary, my mother and I think that you are so brave.
Awe thanks Alb ert Glass!
So it’s been a while since I’ve watched you channel (I live close to where you lived in Massachusetts) and it’s been a while since I’ve watched. Today, I was feeling a little down and your channel popped up because I’m a subscriber. THANK YOU!!! I was reminded to “laugh everyday” and enjoy the little things! It was the exact reminder I needed! It was the reminder I needed! You guys are amazing! Thank you for the reminder!
Wow Peter has made so much progress with the backyard! Well done Peter!
Glad you got your first dose under your belt, Mary! Also...That back yard!!! WOW Peter!! Good job on that blanket of dirt! It looks amazing!
You are so strong I have never met someone as strong as you❤️ Keep up the great work don't let any one put you down Keep your head up❤️
Congratulations on conquering Your first SUB-Q IG infusion!🎉🎉🎉
And the bird nest in the hanging flowers is so amazing 🌺🐣.
What a good way to celebrate International Nurses Day.
glad it went well for you , my son had a horrible allergic reaction too it but had 7 needles at once 2 days in a row starting out, and peter is amazing at that yard work , its looking like a piece of heaven
The yard is amazing. You have done a terrific job. Ollie is going to love it
💗🐶💗
Thanks G Laurent!
I’m amazed how much of your medical care your able to do at home, this would never be aloud at home here in Canada like ever, but I think it save the medical system so much money and empowers patients to take care of them selves with guidance of your medical team
Topless Peter! 😮😂 Loved the potato stamp and recycling birthday wrapping. You're so creative.
Thats the same thermometer I use to check my temp. Its a good one I like how it has the green, yellow and red color for okay, low grade and high fevor. Also lobe the creative wrapping paper.
I will be starting mine soon. I'm waiting for everything to go through with my health insurance. Thank you for posting this!
WOW! You're doing an amazing job on the back garden, Peter. Well done! I can't wait to see it all grassed over. :)
Thanks MammaBear!
Great job Mary! It probably is easy for someone with your experience but it’s still amazing that you handle so much of your own healthcare. The yard looks awesome! That’s called sweat equity and it makes your property more valuable right away. I bet Peter sleeps well at night! That kind of work makes you feel good in body and mind. Love to all!
Mary I'm watching you prepare for the Nurses visit, and I have to say this isn't the first time I've thought this! I think you would make a wonderful Pharmacist. In fact, I'd go so far as to say you would make an amazing Nurse! You already have the base/intuition, generosity of spirit and compassion which in part makes a wonderful Nurse. I'll say when rather than if you're finally well, please consider this professional route. You'd be amazing! 🙏❤🙏
I'm so happy, I received all three of your signed prints and they are all hanging up, I wish I could show you a picture!
Chelsea awe yay so glad you got them! :)
Thanks for the video. I am considering SQ for my infusions in the future. I have been doing IVIG in clinic settings for 13 years. The mistakes with the nursing staff over the years have been many. I do have a port, my second one. The dosing is my only concern. I have CIDP and my IVIG dose is .5 grams per kg every 3 weeks. You make it look easy. With home SQ the mistakes from nurses will be eliminated. This is my main motivation to go to home SQ. Your video is very informative. Thanks again.
Hats off to you Mary your such a trooper!!! I love your spirit love and prayers always
Thank you Susan for that encouragement!
You did that beautifully, Mary! You are one tough cookie! Hope the Benadryl helps you rest well!
I love to use my empty alcohol swab, nebs, gauze etx boxes to put all the little like things all together. We could probably spend an entire week doing this and it be the best week ever!!!! The simple things!!!!
I haven’t finished the video yet, I just had to stop in and tell you two that it’s good to be back! I’ve missed you both, and your kids too. :)
Ok, back to the vid. Definitely have some stuff to get caught up on.
Mary we're so glad you're back :) Glad you enjoyed the vlog!
My mom loves u and she has ivig a port and we love U alot u dont know how much we love ur family :) IM A BIG FAN 😁 im gonna be watching u evreyday and commeting :D KEEP UP THE GOOD WORK WOO HOO ❤💕
Great job Mary!!! Also the yard is looking really good!
Peter has done a beautiful job on the yard. ❤️
Your yard looks so good! Peter has done an amazing job.
So awesome that you and your sister are doing Sub-Q IG.
Love the birds nest in your flowers!! ❤️
Congrats on your first SubQ IG! 🌸I’ve been doing it every week for for the last 2 years! I have always done my stomach, i have recently thought about doing my legs but for some reason so nervous 😊🙃
Thanks Caitlyn! And let me know how it goes if you switch up your injection site :) You've got this!
Great job Mary!! And wow ! The yard looks amazing!! You guys are amazing!! 💕❤️
Hello Mary!
It's always nice to see you in such high spirits. Love you all and happy early bday Peter
Happy Birthday Peter xxxx !!!!
The Frey life thank you so much it’s a lot harder on my dad it’s to much on him. My dad is the oldest out of date. Which is she’s got a lot on his mind right now. I want for us to take him because of this whole pandemic. Thank you so much for praying guys I do appreciate it. Blessings to you both
I meant he is the oldest out of eight and it’s very hard on him but yes hard on the family too so sorry for the mistakes I’m using Voice to text and thinks it knows what i want to say. Which in theory it does not 🙄
Hey, doing this three times a week with 50ml. But my pump is not so big as yours. Sometimes I got heavy bone and jointpain from that, but it's better than sitting in a wheelchair. Good luck and much less sideeffects ! Greetings from Germany
Thanks Simone for sharing that! Keep on pressing on! :)
Real interesting. Thanks for showing this today. Have a good rest of your day Mary
My husband does the IVIG,
Once a month, two days in a row. Today and tomorrow is his treatments this month. He goes to Buffalo, N.Y. to have them done, it takes almost 3 hours each time. He gets TIRED and BLAAA for a couple of days, that's why he does them Thur.& Fri. So he has the weekend to feel better before work on Monday.
They sometimes work and sometimes don't, and the relief doesn't last long. The leg, arm and hands aren't so crampy. And his legs feel stronger, BUT... it doesn't last. He's only been doing them since January.
He may have rejust his doses or strength, It's trial and error.
The yard looks just AMAZING !!!
UNTIL next TIME 💞
can I ask, what does it do? the ivig?
Thanks for the demonstration Mary! I've always wondered how subcutaneous infusions work in people. I'm used to veterinary medicine . Animals, dogs especially, have so much loose skin, you can just pull the skin up in a little tent and there's plenty of space to inject/infuse into. But our skin is stuck to the underlying tissues so I've wondered how they even know if they are injecting subcutaneously or intramuscularly. I feel silly now, I guess it's pretty obvious 😄 Good to see your body tolerated the new Ig treatment, hope the injection sites aren't too sore!
That pocketing happens to me with my insulin sometimes. It feels full or heavy for a while after but it does go away. Once in a while it will bruise afterwards but not a lot . You did great with the stabbing!!! Very impressed!
MO Jo Mama thanks!
Congrats Mary & I’m glad you can switch to injection rather than infusion so you can keep your independence. As a home health nurse myself I always tried to reassure the patient that I wasn’t there to change their routine. If for some reason I had to go into the home I would make sure they knew that I would follow their routine to the best of my ability. I’ve never dealt with IG except to get a dose when my brother in law got sick & we had to take it in the rump!! So watching the video will be interesting. Loved your wrapping paper idea. What more fitting decoration for a caregiver’s present then a bandaid? I’m wondering what you were shooting for when you made the stamp? Hope you’ll share a few minutes of the babies often.
Everything looks awesome & how sweet you have bird eggs!! :)
Ollie can you say goodnight? Then he Yawns!!! 😂😂😂
My home nursing company brings all the pre-meds and supplies like Tegaderm with her. Just a heads up, you might not have to buy all those supplies yourself, the specialty pharmacy might provide them when they ship your infusions. Also, check for copay assistance if you're low income.
You got this marry. Keep on keeping on
Thank you Ashley!
I got nervous belly for you when I saw the title. But I know you got this Mary!!
You’re really good at repurposing things!
Thanks Luke!
How awesome You have a birds nest wow the work You did Peter the yard looks amazing You guys are great God Bless
Thank you so much for this video. I am just starting my sub-q IVIG next cycle. It doesn't seem so scary now.
Great video so glad it all went well and peter must be shattered raking soil to that finer filth is hard work xx
Happy Early Birthday Peter 🎂🎂🎈
Well done, you did good! Heres to many more
I would always have to take Benadryl before my chemo and I just hated the way it knocked me out. I know just how you feel Mary. Peter, the yard looks Amazing. Really beautiful. Great job. And the little eggs are oh so cute. What kind of bird are they? I presently have nesting on my house junkos, doves, and robins. Yesterday I just discovered a new mud nest on the far side of my house. Not sure what kind of Bird.
Alison that's so fun you have multiple bird nests right now!
I wish I had your energy. 😊 Thanks for the daily encouragement & motivation.
Ask the doctor if you can predose with a 24 hour antihistamine the first time they say you don't have to take benadryl. Most 24 hour antihistamines can be take with benadryl so if you start to see a reaction you can still take the benadryl. Just a different type of precaution that shouldn't make you drowsy for your first non benadryl sub q ig
I have to give myself 3 shots a day in the upper side leg, fatty part on the side of the arm, well..all the place’s you have to. My needles are 27G x 1/2. Don’t know what your needle size is but if you hit a little artery or vien, oh how it burns. It took me a while to find the sweet spots. DONT do under your arm, do side lower part. The fatty part, try that as it hurts the least I think. The side, well...ya have to fine where it doesn’t smart! I have to go back and get caught up to see what going on here with you now..sorry I’ve missed them. xoxo
Mary thank you for sharing your tips and tricks you've learned!
When I did sub q I did 4 sites each week so my “bubbles” were not at big and sore. It took my 1 hour to infuse. I had to go back to IV as subQ was not covering my brain.
Hi Guys , I am glad all worked out a-ok Mary of the new way of doing it . It seems like it might be easier , I hope so . Wow , that backyard is truly become amazing. Thanks for the video , and stay safe !! , take care , Gary
I’m curious how you felt about it? I do subq 2-50ml syringes through the pump with 4 needles once a week too. I usually do the back of my arms and belly. It’s better in the fat! You don’t have much of that lol my thoughts are muscular so it seems the needles hit harder! I do this by myself now with a buddy to help. You got this! 👍🏻 ❤️ lots of love from Marci in Mass ❤️
SweetXOXOMarci I’m the same dose but 5 sites once a week.
Your yard is looking SO nice 👊🏻💜
Just like to say Mary you are s amazing woman my mom as and daughter loves watching your vlogs and first Peter a good person and a hard worker
I'm so glad it went well for you!!!!✨😁 Congratulations on learning another thing you can do yourself to keep independent. I hope the swelling has gone down.❤️
Also, I'm SO EXCITED about those baby bird eggs!!!!🥚🥚🥚🥚🌷🌷🌷🌷 Wooohooo!!!
I’m pretty sure it should be written SCIG since the abbreviation for subcutaneous is SC
A potato stamp lol i would never thought of that
Never did that in kindergarten??
It’s old school 😊
Whoop whoop 💪🏻
You are soooooooo brave!
I’m a fellow medical nerd but also not a fan of needles if it involves myself 😳 and especially when it is something new 😐
Something completely unrelated to today’s volg:
I really don’t know why this song (Me and Mrs. Jones) came into my head, I really can’t remember when I heard it, it must be so many many many years ago, that’s for sure. But I recently discovered your UA-cam channel and I am watching a lot of your ‘old’ video’s. And our poodle Dora was watching with me, and she was looking at Oliver in such a sweet way. And what popped into my head was 🎶 Me and Mr. Bones
We got a thing goin’on🎶 and I is just this part of the lyrics, and I don’t know the rest but I was like 😂🤣🤪🤓🙈 I hope it makes you laugh 😅
I really want to thank you and Peter. I don’t have cystic fibrosis, but other chronic illnesses. And it is not only fun to watch your video’s but also so helpful! In so many different ways. How you handle it alone and as a couple, how you try to laugh every day and stay mentally/emotionally sane. How you communicate with doctors (or doctors to be). How you organize, in many different ways. How you travel. How you go out together. What emotions you are going through and why. And the list goes on for me. I laugh and cry a lot for many different reasons, sometimes a lot, sometimes a little.
It feels a little bit weird (and slightly creepy 😉) to say but I recognize a lot of myself and my boyfriend (oh I feel so young when I say that 😂 (33 🤫)) in you and Peter (separately and together as a couple). And that helps even more.
I am SO grateful for your Vlogs. Especially because It can be so hard.
Even though you are an extrovert, it also takes guts to vlog if you ask me! (The funny thing is, when I became chronically ill I became more and more of an extrovert).
And last but not least; how cute is that birds nest!!! 😍
XO
Ismay, Wessel & 🐩 Dora
from the Netherlands
Ismay, Wessel & Dora thank you so much for those kind words and sharing how our vlogs have been a source of encouragement and joy for you! We are so glad that you are a part of our Frey Life family and that we are able to provide moral support to you via the vlogs :) Keep on pressing on friends!
The Frey Life 🥰!
I squirmed when you poked yourself! Great job!
I did too. Big needle phobic here.
I hope sub q works for you. My body was able to tolerate that as opposed to ivig which I do now. My insurance won’t cover sub q anymore so I’m stuck with ivig and the side effects. Love your story. If I ever need to reset mentally or get positive perspective I watch you and am thankful for what I have rather than what is going wrong
I wish that would have been an option for our IG. So cool. So happy it went well! God Bless ❤️
At least you can do it yourself after this so if you need to continue to pre-dose with Benadryl you can do it in the evening and you might not be quite as zombie by the time you wake up in the morning.
I believe the little guy at 6:41 is a Carolina wren :) I'm a fellow backyard bird enthusiast!
I love your videos! Your such an inspiration! 😍
great job and yes you are very strong and so in tune with your body and what works for you..amazing
Peter and I share a birthday! Happy early Birthday Peter! 🎉
Loved you found the nest. I found one the other day in briers on my fence with three babies inside looks like mockingbirds.
Benjamin that's so great!
Yeah for us May babies!!!! My birthday is the 19th also!!!🎁🎂🎂🎁
That is interesting, I have heard from IVIG before, never from subcutaneous immunoglobulin.
For IVIG, how about a pre-med/pre-dose second-generation antihistamine (non-drowsy) instead of a first-generation (drowsy) one like benadryl/diphenhydramine? For IVIg I pre-med with a 2nd-gen non-drowsy antihistamine, either cetirizine or loratidine.
Circle of Leaves thanks for the suggestion!
If it hurts your stomach or wherever you put it I would grab a blanket or a pillow for pressure. The first couple months of it is going to be rough but then you will be fine doing it. I do subq immuno therapy for my common variable immune deficiency.
Great job Mary! :)
Wow doesn't look like the same yard! Mary the concentration matching game you showed on one of your videos a month or so ago with the different types of birds, can you tell me the name of it and where you bought it please?
Just a heads up, mine made my dexcom readings funky! I had to not do the Subq IG in my arm if I had my dexcom there. Same with my legs.
Ok Frey Family. My mom and I are big Frey Life watchers since 2015. My mom got pneumonia (no u.s. covid test at that time). In Jan. And her heart was never the same. She had open heart surgery yesterday May 6th 2020. And in a lot of hospitals near Seattle there is a no visit policy and we are all in Stay at home order, so alone ... She is still on open chest mang. and in the i.c.u. and we don't have an idea yet if she will bounce back from this 😢. If you could lift up prayers to Katies mom? It would be very appreciated.