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IMMUNOGLOBULIN THERAPY FINALLY APPROVED! 😷
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- Опубліковано 1 тра 2020
- Vlog 5.1.20 → We got a call from the Home Care company that SubQIG (SCIG) was finally approved by insurance.
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Wow! So many medical calls yesterday, including one that we have waited a long time for!
So happy that it finally got approved! ❤️
Same here! Quarantine has meant less visits in office but Oh so many more phone calls! Have been dealing with getting IVIG approved and switched from in office to administered at home. Hope sub q works well for you!! Started sub q hydration almost 3 weeks ago and has been quite the learning curve! Right now we switch back and forth between thighs. Arms and belly are not good options for me. Arms don't absorb at the rate I need, belly is taken up by g and j tubes. I'm sure you'll find a way that works best for you!
Waiting....makes me think of Claire Wineland, what if she would have had Trifecta or another new CF drug...you know Claire is smiling down on the ones who got it....Claire, was that way. A light as bright as her, will never go dark. I miss her. I know many do. Peace. Stay safe.
Is this the once a month subq? cool. I have to do two injections in my stomach. One is daily and is to try to rebuild some bone in my spine, one is new. The new one is once a week because it has more than one med in it and son has to smack it on his hand 80 times and then check by picture they show the color to see if it is enough. The first one for the bones is a small thin needle. Not bad. the second one because of the mixture, is still a short needle but thicker. It is ok but not my favorite. They can be injected in stomach or thigh. They have come out with so many new things. My second one is to regulate my blood sugar but is not insulin. Hopefully if it works, I will be able to come off of metformin. Just think, you will have more freedom with the injection and don't have to try to schedule everything around it and is supposed to work really well. Good luck.
Two things...
I loved Peter's expression when he learned Mary is finally getting SubQ-IG.
Such joy and relief.
I cracked up when Mary was gasping at birds.
That's a great name for your new bird channel....Gasping at Birds. 😉😄😄😄😄😄
Three things!
Harry!!🤗🤗🤗
How cute was he, curling around and around until he was wrapped up in his cocoon. 🥰
Oooops! FOUR things.
I'm making Salsa Chicken for the first time. It's in the crockpot now. So excited to try it.👍🏻
Finally you get IVIG! I have been working hard this whole quarantine to take plasma from donors just so we make sure people like Mary gets their IVIG! This helps me as a reminder of why I am working during this pandemic!
Janet T thank you!
But she didn't get IVIG.. she got SCIG which is actually very different which is why she said she was nervous. It's a completely new "drug" she's never been on.
Peter you need to get samples of natural stain colors and use left over fencing to create examples of stains you like for comparison. What we see on video is not real life color. ❤️
The progress on the yard looks good Peter glad You guys enjoy the birds glas You have Trikafta and it's working for You Mary
We used Sherwin Williams Banyan Brown on pine in a project recently (I’m an architect) and it turned out great! Used the semi-transparent stain from their super deck line and it’s not too dark, not too yellow and not too orange.
Hi you guys. Just wanted to say the back yard is looking fantastic. Peter your hard work is paying off. Great job
Mary the bird whisper lol Ollie is so cute and then you have this blanket moving on the couch!! Love and prayers always
You need a hummingbird feeder. Making the nectar is super easy. They are fun to watch.
I so love the idea of a thank project for the vertex workers. I'm so grateful just for my pharmacist for making sure they keep all my pills in stock, let alone the people who actually make them in the first place. The people there will absolutely love it xx
I'm so happy for you Mary. The backyard is really coming along nicely. Looks great.
Stain your fence a light grey. We did and I was surprised at how much I liked it.
Watching Harry burrow in his blanket brought me such joy!! My chihuahua Reese (RIP) did the same thing and it was so fun to watch (a little scary too when I couldn't find his face because I was afraid he couldn't breathe!!) I am down for a Mary bird channel!!!
Fence color: How about a brown/gray that matches the color of the tree trunks we were looking at in the shot? Almost a weathered wood.
Hey guys, Do a search on Amazon for Squirrel Feeders ..... ... This way the birds and squirrels can have their own snacks 🐦🐿🌽🙂🤗❤
Cool! I never heard of that.
I know!! I was like poor little squirrel 🐿
@@eej1983able yes 😀
They are so cute. My friend makes them.
Anything SubQ can be given in the stomach, upper arm, or thigh. Basically anywhere you have fat.
I love hearing the birds churping! Love your sweet laugh Mary. Peter is working very hard and he's doing a great job.
Iron
is good for coloring wood a "darker more normal" color. You can find iron most places and you just rub it on with a rag or a paintbrush, it'll get darker as it sits in the weather.
I will forever love how you get excited over the little things Mary. Like watching the birds, the sun shower you had today, or pretty sunsets. Your joy brings me joy, so thank you. :)
I switched from ivig to subcutaneous 6 months ago and love it. A nurse will come out 3 times and show you. I pre med,and it goes in the stomach, thighs or back of arm. I use stomach, the needles are so small you don't feel it. The ivig took me 6 hours because of headache, this Hizentra takes 2 half hour
Annoying they wont let you keep doing IVIG, however, Thank God! I really feel like it works for you. Ive been anxiously waiting.
I totally get your love of birds. My feeder is well stocked. Even better is a small $3 plastic window bird feeder that suctions to our window. We put sunflower seeds in it and have blue jays, nuthatches, chickadees and colourful song birds. We too have to stay on top of the squirrels. They are not content to munch on seed I put down for them. They need to be sitting in my window bird feeder. Acrobats to say the least.
Great news on being approved for Immunoglobulin Therapy! I think that squirrels would try or do just about anything to get at a bird feeder. I love listening to you laugh, Mary. It warms my heart. Blessings to you, Peter, Ollie, and Harry! 🤗❤️❤️🙏🏼😘🐕🐱
I love the bird footage. I got to go outside today and I loved seeing all the birds at my bird feeder.
I loved this vlog! Good news for the Subcut IG and "gasping at birds" gave me a huge smile.
Yayayayay!!! Congratulations, Mary, on the approval for SQiG!🥰🌷🐦🌺🐥
I live in Oregon, it rains most of the time.. and sometimes rains when sunshining too. We call it liquid sunshine.. :)
My ex fiancé had bird feeders in his yard and I loved watching all the birds. I miss that because I live in an apartment. No bird feeders allowed. Please keep sharing your birds with us. TIA
My nieces little boy (3 years old) has that done every other week, in his belly. He is such a trooper. My prayers for both of you
Happy CF🌈💞🔆Awareness month
Redwood stain on the fence is beautiful! We have a lot of redwood fences in California. We also have lots of white, but I don't think that's what you're looking for. Mary, congratulations on finally getting your immunoglobulin therapy approved!!!
The yard looks good. Keep up with the hard work, Peter.!!!!! ❤❤
Thanks for this vlog . Harry trying to crawl under the blanket made me laugh, Mary doing her bird siting reactions made me laugh so hard. And then you discussing your issue with getting your medication and treatment sorted out when moving to another state, made me feel not so alone, as I to have moved states, as I have mentioned before. I have been dealing with my new Doctors having different options on the medications that I was on and wanting me to change them, which I have been finding very difficult, as I found the medications I was on were working well for me and now I am in a position where I'm between medications and am feeling rather crummy. whilst still trying to trust my new Doctors. You have this nack of putting things into perspective for me, so once again Thank You.❤️🇦🇺
I was thinking of a Redwood stain for your fence. I'm happy to here you are once again getting Immuno goblin therapy. After 2+ years my daughter just got her second dose of IVIG this past week. She is juat starting the Journey of IVIG and has done well so far, Thank you for sharing your Journey with it, it has not been scary knowing some of the in and outs.
Might have to keep you two quarantined. You're having tons of fun with your dirt and birds.🤣😂🤣
I just adore you guys -- Ollie and Harry included! You have the most incredible way of finding the good in everything. I am truly inspired by the way you exercise gratitude! Praying that the new medication delivery system will work out well for Mary. And... I really like your fence the way it is! It contrasts so beautifully with the vibrant green and dark brown of your yard!
Good news about the drug program. And yes, I love watching birds at my feeders. You could probably rent Peter out for yard work!
Y'all need to put a squirrel feeding box out nuts and seeds.
I like Peter in fast motion! Lolllll! How is the rash he had doing?
To adorable you two, Mary’s giggle and Peters smile , love your vlogs , watch everyday ❤️🥰🌼🌷🌸🌻
Your yard is looking really nice. Love the birds. Hope little Mr. Squirrel wasn't able to get to the bird houses. He's cute to. He was funny like he didn't know what to do, lol.
Love those birds.
Glad your medication stuff is getting sorted out Mari.
Have a great Week!🐕🐈🐦🐦🐿🐇🌞🌺🌻
Hey Peter, Regarding Stain. Take a sample piece of wood to the hardware store. Some stores will have samples of stain on different types of wood so you can see what it looks like on yours. Best way to tell also buy a few small cans of your favorite one and try on scrap pieces of your fence. P.S. I like Wendy Lawton's s suggestion here. I was thinking the same when I was looking at your yard.
Here in the U.K., a company called Ronseal make staining for fences. The smoky blue is rather nice! Mary, I am praising G-d that your approval for SCIG has come through. Give thanks to the L-rd for He is good. His mercy endures forever! Shavua Tov (a good week), guys! xxxxxxxxxxxxxxxxx
Mary, I am sorry to hear about the setback. Peter, the Yard is looking good.
You are making good progress on your yard - it is going to look awesome!! Mary, when you were whistling, it sounded like the bird was talking back to you. Thanks for sharing your day - have a great weekend!!
Your poster should say "I vertex can!"
I get it....about the birds. I am sitting on my deck in Central Illinois and just saw a beautiful red oriole.
We've usually used an oak color. Most often light to dark oak. We really like the look of it. 😀👍
Wow guys, your back yard is looking awesome!! So happy that your SCIG was approved, yay!! Praise God! ...The color of fence stain next to natural is called Honey Maple, it's a beautiful color!....You both look great, stay safe & God Bless...Hopefully your squirrel issue will be good :) :) :)
Congratulations get something approved is always a victory 🎉.
I’m on SCIG.... it took 4 years to get approved! I do 5 needles in my thighs once a week. But my team is considering splitting it up to 2 times a week.
you can see how hard Peter works in the garden if you look at his hands more closely while he talks about the color of the fence😊 .... his fingers are already working through the gloves😂😂
Mary I find it funny, you and Peter love watching and vlogging birds and I love watching and taking pictures of the squirrels in my backyard.
Mary, you are the cutest! I love birds too. I always get so excited when birds come to my feeder...and my cat loves it too! 😻
Mary! I LOVE your floral bedroom bin?! I’m so feeling that vibe and soo want one for my bedroom! But I live in the UK ❤️🌈🙏
Yay! SQIG! At least for people with Mast Cell Activation Syndrome (a type of allergy disorder where mast cells are overreactive), SQIG tends to be better tolerated than IVIG so I wonder if it would be the same for you? Obviously everyone is different though. I hope it goes well and I’m so glad you have access to this treatment again!
For Peter and the fence, put brown color on it so it will match the malch and go great with green leaves on trees.. and Mary, wohoooo for immuno therapy, keeping my fingers crossed that it all goes well :)
Hi Peter and Mary I think the same colour of your decking would be nice for your fence it would look lovely against the bark of the trees and the green of the grass just a suggestion.
Love watching my birds
Not sure if you would like it, but I love the deep red/brown tones for fences. Almost like mahogany (I know thats also a specific type of wood). Its a gorgeous color. Loving that your getting what you need Mary! Sending prayers to you guys ❤
Hi Guys , For all the furniture I have designed and built , I have always used 1 < ONE > , 'signature color' Minwax 210b Golden Oak. Wether the wood is pine or poplar or oak // maple , whatever , the natural grains really show through and the wood seems to brighten right up. Of course after staining you would need a coat of semigloss polyurethane , ( basically a plastic coating ) for that effect outside , gloss would be no good and a satin finish would not be as good either. Trust me , it will look amazing !! , Backyard looking great , good luck with new meds , TY for the video , take care , Gary
Great News!! I'm really happy for you Mary! That little Squirrel is determined!!
He is so cute!!
The yard is looking good Peter!!
Great video guys! 🥰
You guys were so cute gasping at the Birds!! 😁
We are in the midst of a remodel (for the past 4 years,)
We have some "temporary " boards on the railing of our deck, and they looked like your fence a couple years ago, and now they are a weathered grey. I kind of like the Color because it blends well.
I have been doing SUBQ IG since 2008. I have had the 2 and 3 needles set up that normally go in the abdomen to do it. They are small needles. You numb up the area, put the needles in, put the tegaderm patches over it and use an infusion pump to push the SUBQ through. Your infusiont pump depends sometimes on what SUBQ IG you use. I use Gammagard now but have used others. I do mine every week. You can also put it in the back of your arm, your leg, or any fat pads at your love handles.
Don’t worry too much abt giving yourself sub q shots. Not difficult or painful at all. I had to give myself chemo sub q shots for years and the process was fine. Becomes routine. I do know that everyone is dift with needles & all... but also can tell that you are quite a warrior who will handle this effortlessly💪 best of luck & pray you have no bad reactions that you are worried abt
Peter, look at your dirt in the yard and the tree bark. Buy a stain that matches the tone of those.
Harry wrapped up: mood today! lol
H, I hope you have got the IG by now. Sub Q is a breeze. In Not America, where I live, I have to draw up the medicin myself, put the syringe in a pump/feeder and having it going in during 30 minutes. I do 50-60 ml weekly and have done so for... say around 5 years or so. My syringes only takes 20 ml so I have to switch out the syringes a couple of times, and as it's uncomfortable to do more then 30 ml in the same spot ,for me, I generally use two needles. It's great. I have only had two to three pneumonis per year after we figured out how to manage my whole medical situation. Before that I had a more or less continuous pneumonia that only changed location between the X-rays and more or less rented a room at our infectious disease wards. I'm glad that you can get it through your insurance as it's ridiculously expensive. I get mine through our NHS like system, which I appreciate very much. Stay safe and stay sane everyone. Yours, Ann
Birds! 😱😉🐤🐦💞 Your laughter warms my heart
My son and I both have major immune deficiencies and I have multiple autoimmune diseases. We started on IVIG, he switched to SubQ and was on it for awhile and didn't like it, he ended up going back to IVIG with a port. I tried sub q for awhile and didn't like it either. I prefer the IVIG through my port. Now I didn't tell you all of this to scare you. There are alot of people that love Sub Q for it's flexibility because you can basically work around your own schedule when you want to do it, you also have the flexibility with sub q to take it with you on trips or vacations just like you would any other meds, versus IVIG that you have to do at home with a nurse or at the hospital by appointment. The needles with the sub q are small, and don't hurt to bad, depending on what brand of med you are on, they can be placed in your stomach,back of arm, love handles, and upper front of your legs. I am glad you were able to get approved, I know how hard it is because most insurance companies fight it because the meds are so expensive. I pray the Sub Q works great for you 😁
Maybe you could get a squirrel feeder to feed the little guy so that he doesn't bother the birds food.🤔😊
I’m glad I’m not alone. I called sour kraut “pickled cabbage” and my mother laughed at me... lol.. It’s the same thing..
It’s not the same thing. Sauerkraut is fermented with live organisms, whereas pickled cabbage gets its sour flavour from vinegar. Most store bought vinegars contain sulphites, which pretty much kill live organisms. Sauerkraut is healthier for you because of that. Just a little fun fact. 🥰
In the Carolina's we refer to those as sun showers
if you can find enough used motor oil and paint it on the fence it makes it so pretty that is what we do in the country it leaves the wood well perserved and only needs done once every few years
For the sapling shock cut off half of each leaf and make sure it gets enough water. Maybe move it out of the sun and wind. Good luck!!!
Pray subq works for you. I started subq Hizentra back in September. I dont have the side effects with subq like I had with IVIG that I was on for three years prior. My doc has me do it every day!
It’s not “it” as in a singular needle, but “them” as in multiple. The number is dose dependent.
Personally I used 6 at a time. The first is the worst. You will get used to it.
Hizentra was not good for me. Gamunex was. Every body is different.
I used my belly and outer thighs. Alternated locations each cycle.
callyflower I agree! I’m on 5 needles. Started with hizentra and just got switched to Gamunex and am doing much better!
callyflower Hi were you on gamunex IVIG prior to sub q? When you went on sub q gamunex did you feel the same as when you did ivig. I switched from ivig gamunex to Hizentra and its not as good as gamunex ivig for me.
callyflower also do you do it weekly. Gamunex sub q site mentions every 3-4 weeks but I’m not sure that’s what most people do vs. weekly Hizentra
I was on IVIG (for my Immune Deficiency) in 2018 but stopped because of symptoms. I am also going to be doing Sub Q. I have the medication and everything I am just worried about a nurse coming in to my house right now. The re-approval time is crazy considering you have been on it before.
Love love it when Mary giggles peter you are working wonders in the yard and colour my daughter did hers a lovely grey which would suit your house and deck
good luck with the new therapy hope it works out for you on the fence pine would be a nice color
When I first started sub q immunoglobulin replacement therapy a nurse came to my house to show me how to do it and everything. I infuse once a week and she came for 4 weeks. After that I was on my own with it. I use Cuvitru.
It’s a brand new fence buy next summer it will start to darken. Sealant might be a good idea. So it will last longer.
I just love you guys. Your voices and personalities sooth me. Hugs from iowa
Thompsons Water Seal tinted stain is easy to work with. I used the natural cedar so it's a little red, but it comes in a few different colors. Got mine at Walmart.
Put a topper on soda cans left outside. Bees and bugs like soda too!! 🐝 🐜 🥤
Amen!!!!!been praying since it had to stop. 🧡🧡🧡🧡🧡🙏🙏🙏🙏🙏🙏🎉🎉🎉🎉🌟🌟🌟🌟🌟
Yay!! So happy you got things figured out.
Never been a better time than right now! Ask that helpful immunologist if she could somehow, being this during the time of a pandemic, to make one exception. Any time you cam stay out of a clinical environment is worth swallowing pride for.🤣🤣🤣 Nicole, RRT😘
I'm in Florida where the state law requires that IVIG be given in the doctor's office. For the past 12 years, every 4th Monday is my "chemo Monday" .January 1st my insurance company decided to not approve it for my CLL (chronic lymphocytic leukemia). Finally in March it was reapproved due to my oncologist telling them over the phone and in writing that my infusions are a life or death situation.
Mary during your 4years of doing them at home which drug were you taking? My IVIG drugs have been switched at times due to world wide shortages. Monday I'm expecting it to be Octagam, but it may be the Gammagard again. One of them takes 4+ hours to drip into my port where the other one takes just under 3 hours. Which ever one, it's a long day for me since I live an hour away from my doctor's office plus the pre-meds of benadryl and pepcid take 30 minutes after my bloodwork is approved.
Good luck with the new way of doing it. You are going to keep your port in case of needing antibiotics aren't you?
When I lived in MN and we got rain when it was sunny, we called them sun showers. I now live in the Rockies, and with such huge horizons and the fact that we're on the edge of a mountain range, I wouldn't go so far as to say it's common, but it's also not exactly rare, that we get rain from a cloud blow onto us, even though we're in the sun - we got one just a couple days ago.
Since we have moved to the mountains of WV, we see Bald Eagles, Golden Eagles,White breasted Nuthatches,Hooded Warblers,Brown Thrashers, just learning all kinds of new birds to us! So fun!
A light Grey would be amazing in your yard
Didn’t you do that on your sister one time. I seem to remember her telling you about it and getting you to put the needle in her side. You can do it. Love and hugs Geraldine xxxx
Ha, I was remembering that video, but I thought that Mary really wanted a go at poking her sister, and she was like, nope! But was a good video ;) xx
Me as well !! 😊
You probably already took the picture, but you could enlist the drone to get a picture. May have to move outside but it would be cool.
Sub-q is so easy to do, the needles are nice and small.
I love the room so far 😃 ya'lls room. Beautiful!
Could you hover the drone overhead/above and take the Trikafta thank you photo like that. Would that work?
Wow I have never realized how huge your garden is 😭😭😂
Thanks for bringing a smile to me today 😊💕
Hi guys!! Mary I was wondering if I could ask you a question? I was recently put on Pancreatic Enzymes. I know you take them as well. I though back in Boston you had said which kind you were on so I was wondering if you could share which ones again that you are on and do you have any issues with them? Thank you for your time. I’ve been following for quite awhile now. I have so many severe health problems and I’m still heading down hill. I do have Celiac Disease, Malabsorption Syndrome and also had the Bariatric Sleeve done. I also have Severe Uncontrollable Asthma and Asthma induced COPD!! Thats just a very small background into my health. Thank you guys for you do. I’m so blessed to be on this journey in life with you! Congrats on finally getting Immunoglobulin back!! 🙏🏻🙏🏻❤️❤️ Im from Upstate NY if you wanted to know.. Stay blessed and sending loves!!!
She has used Ultrase for decades without issues.