Hi y'all! The IV fluids don't cause "fluid overload," swelling, extra bathroom trips or anything like that because my body *needs* the fluids. I'm in a state of chronic dehydration due to my various conditions, so I absorb what's being infused rather than filter it out. We had to work to find the right regimen for me when I started IV fluids, every one is different. I saw this topic brought up a few times in the comments so I wanted to address it, I hope this helped! 😊

@BronzeBellaBria

6 жыл бұрын

This is so funny, I was just about to type this after binge-watching like 6 of your vlogs

I'm a regular blood/plasma donor!! I'm not in the same country as you but I honestly didn't know a tonne about how my blood products were actually used. I'm so happy to learn I'm helping people like you!

@michellewheeler559

6 жыл бұрын

Tahlia Turney even though you're not in the same country as us I'd personally like to thank you for being a donor it's donors like you especially plasma donors who give Jackie and other patients like my son as well a fighting chance to live as I'm. Sure you're helping those in your country as well. To make 5 g of immunoglobulin it actually takes 10 thousand donors last I read from the Immune Deficiency Foundation

I have Gastroparesis. Diagnosed in 2015. I’m totally j-tube dependent for nutrition. TPN when needed. I found you by looking for more information and just a grasp on what is happening with me. Thank you for being so open about what happens with us.

Your nurse seems so lovely! It’s really nice to see a kind nurse who isn’t intimidating. I don’t have a port, I don’t have a need for it, but it’s so interesting to see all of this being done! I’m excited for you changing the tube yourself, it definitely seems like a good experience to get to know how to do all this yourself!

I'm studying medications and particularly Subcut, Intramuscular and IV routes of meds for Nursing at the moment! I absolutely love seeing an insight to your regime, right down to the recapping of needles and swabbing of vials. Your knowledge and confidence in your care is awe inspiring and keeps me coming back each day to learn more! Keep doing what you're doing! Thank you for sharing this and don't forget to take time out for yourself if you need!!

Right now getting out of the house is very difficult for me and your vlogs, and Janiece's vlogs are something I look forward to all day. ♡

Jaq explains things so well. There’s always a beginning, middle, and end to every adventure, with explanations all along the way. That’s such a huge part of video creation and she has it down. 👌

Love your nurse! I’m glad she’s open to being on camera because I find it very interesting and helpful!

@nleb1993

6 жыл бұрын

Kayla Hensley maybe your nurse should be janice's nurse too. I know she has been having issues with her

I’m new to your channel, and really enjoying it. I have a golden that I want to train to be a helper for my daughter, who has a severe ortho disorder. Your training is an inspiration to me! Thank you, and God bless!

@meganlovesdisneyandcrafts4780

6 жыл бұрын

WELCOME! She has a lot of training videos and even on the AFO'S :)

Girl, that was intense how much blood you drew. It's awesome that you get to do that at home. I hope you sleep well tonight.

When you say "push benadryl" or something I always think of Mean Girls.."I'm a pusher Cady! I'm a pusher!".."Like a drug pusher" Lololol :'D

Thank you so much for sharing these moments of your life with us! It is so great for awareness. I’m so happy that the nurse let you draw your own blood. Great work on taking control of your care. I always learn lots when I watch you. Sending love and light to you and your family.

Hi Jaquie, I'm glad that your IGG is better. I think you are amazing! You're a good example of "Don't sweat the small stuff". God bless you. xoxo

progress, progress is what we are looking for 😊 I hope you are feeling better ✌ I know it's not such a happy moment but my son had help with his blood as well and he liked that so much better than a normal draw from the arm. He was all in a WoWed moment 💚 take care

Your nurse seems such like such an awesome lady! That’s so neat she’s so okay with being on the vlog! 💕

I've been here for a few months. I came here originally because I fell in love with Harlow. I don't have a chronic illness but I do get severe migraines that have often sent me to the ER. Watching you and Harlow, and all the training, has inspired me to train my dog. He's done really well and I've used a lot of your tips and videos to help. Thank you so much for continuing to be an inspiration for all. We love you Jacquie!

That was very educational! I love how the blood is drawn.. I don’t love that u have to have it done.. none the less it’s pretty cool! Hugs to u, Judd & that gorgeous Harlow!😃✌️

Thank you so much for giving that blood warning! Much appreciated!❤️

Your nurse is a good teacher. You r blessed. Hope your morning after went as symptom free as possible. Hugs!

That makes so much sense!!! I was in the ER two weeks ago and had a Mast Cell Reaction to a nurse who as wearing too much lotion that smelled too strongly. I had never had one like this before in the presence of a medical professional (that wasn't purposely triggered. my allergist did allergy testing and it caused me to tail spin of hives from head to toe... but it wasn't nearly as bad as this reaction was...) I was in the ER for an adrenal crisis and the nurse with lots of strong lotion came in to run an EKG and i immediately broke out in hives and my face got red and puffy... luckily there was a nurse on my other side administering zofran and was able to quickly grab benadryl and administer that as well. she administered 50mgs and i don't think she diluted it because i felt something i have NEVER felt before... almost high. it was incredibly weird. i thought i was losing my mind.

I really appreciate your videos. I was diagnosed with Myasthenia Gravis about 6 months ago and will be having my first IVIG in a few days.

I hope you had a good night . So glad IVIG is helping .

how are the AFO’s working for you? your body is changing from IVIG and it’s for the better as well! glad you’re getting everything you need. :)

Lovely video Jacquie,its nice to see you smile,you make all that look easy,poor janecie is struggling with her nurse,you have such a lovely one,she is there to help you and that's great but it doesn't always work out that well.its horrible when you feel ad though yr nurse is not helping you,it makes you feel even worse,speaking personally 💜

I always find your vlogs very interesting and educational. I didn't know that you can do so many things at home. Like the infusions IVIG blood draws. It's very good to know. I hope you have a better night tonight and you don't have reactions to the IVIG

@michellewheeler559

6 жыл бұрын

Sue Schultz it's so awesome to be able to do these functions at home now a days, it truly helps the patients especially those who cannot get out as easily. It's been such a blessing to our household as well.

I love how educational all of your videos are! I have no intention to go into any kind of medical field (contrary to what everyone assumes when I tell them I’m a biology major) but it still really interests me. Just another reason I love watching your videos! 💕 (and I’d be lying if I didn’t say this all started because of Hippo’s instagram haha)

Hi! I am also going on a trip in a month. Good to see how you are preparing, maybe it will remind me of some things I should not forget. Thank you for adding it to your vlogs! I am going to an island, so I have to go on a boat :o

I hope today treats you well

I’m about the get a port put in for chemo therapy and your vlogs have helped me understand it better thank you so much

I bet it's nice that you can do all that in the comfort of your own home! Your nurse seems so nice! And glad you have a plan for your feeding tube!

Looks like your IVIG infusion went well. Harlow really wanted to help with pre-meds 💖!

when I was on IVIG I had TERRIBLE headaches, almost migraines. we didn't see any noticeable improvement so I went off of it. glad to see you're having progress though!

@decadentnight

6 жыл бұрын

From what I've seen of patients on here that use it, it takes 6+ months to see benefits. And of course each case is different

Its great you are feeling great results from your IVIG.

Whenever I watch you use your port I always remember Judd and “Babe stop it’s less resistance”

I have RRMS and I take Solu Medrol periodically in high dosage to beat my symptoms. It's terrible in terms of side effects but helps kill the inflammation. I hope you'll have as little side effects as possible and you'll feel good as much and long as possible

Prayers for good effects post-IVIG...

How stinking cool that you get to do your own blood draw!

I have been watching for a while and even as a spoonie I find that your spirit and strength in the vlogs spreads through your viewers and community.

@nleb1993

6 жыл бұрын

Halen rebel what's a spoonie

@clarissacopeland1907

6 жыл бұрын

Nora Beard it's a person with chronic illness based on spoon theory

I had a quick question since we are all learning from each other, is there a specific reason you guys did bloodwork after IVIG, and not before? Anytime we have to do my sons even if it's just CBC, we have always been told to do it before the IVIG, unless they are looking for immediate after infusion numbers. Just a curious question I'm hoping to. Learn from.

I enjoy watching when Danielle is there. She seems really nice and a good fit for you.

Are you going to try to increase the rate of IVIG? I’m guessing you aren’t trying to increase the dose anymore seeing as you got great results in your blood work! I’m so happy you finally get to see physical proof that it’s working. I remember watching you first consider and be hopeful about trying IVIG and then being so disappointed with all the side effects until you found the right regimen for you!

"Rotating " does not stop hemolysing. If it hemolysed that would have happened during the draw. Rotating mixes it. ETDA tube needed to be mixed, not gel separator tube.

I donate blood whenever I can and I’m glad to know that I’m helping people who need it! I usually donate red blood cells but I’m going to see about donating some plasma down the road.

Ur awesome And so are u reader

You did a great job! xxxxxx

New med regiments, how fun! NOT! I just had a med change myself. About two months ago I changed from pill form Methotrexate to injection form Methotrexate because my body was starting to not tolerate the pills. About a month and a half later I had to change to a whole new med because my body wasn’t tolerating the injections and the lupus was becoming active again. This is my third (fourth if you count the change between pills and injections) med change within a little over a year. I am now signing up for disability because there is nothing else I can do. I can’t work a reg job and we need money. I hate doing it, but this is the last resort.

Jaquie you are an amazing woman!!!! I admire you

The needles go in a Sharps/Foldgers coffee container.🙂

What specific immunoglobulin deficiency do you have? I get immunoglobulin replacement as well.

How do you dispose of medical waste from all your infusions?

I hope and pray your tube change was easy and uneventful xxxx

I honestly don't mind people talking about ports/feedingtubes and showing it etc. I never have, and I also never got weirded out by other peoples blood, but for whatever reason, whenever I see anyone doing something with a port or a feedingtube I feel a kinda weird feeling in that specific area😂 its not pain or anything, I just kinda.. notice it? I'm not sure how to describe it😂

@andie361

6 жыл бұрын

I believe the word your looking for to describe is “the willies” :-) makes you want to squirm, lol

@alienmissy4836

6 жыл бұрын

andie361 Thompson no.. no really😅 it doesn't make me want to squirm😅 it just feels like I can feel that particular area being there, rather than not feeling it... I'm not good at describing stuff😂 but it doesn't make me want to squirm 😅

is it not possible to use tube up nose to stomach only for removal of to much acid and wind thats what i use

❤️you jacquie and hippo sending prayers and support as aways to you

Does it feel weird when you push so much saline? Like when you drink a lot of water you can feel that you just took a lot of liquids in.

Do you feel any gushyness in your chest as you push these medicines in? :)

your nurse is realy cooooool it the third time i sed it but she realy is she whants us to learn to

3:23 Won't you only be able to confirm the settings once you have the tube running through it? 5:55 I noticed you're wearing 2 layers of clothing. You mentioned not wanting to run the tube under your clothing because of your sensory processing disorder, but how about running the line between the two layers? 9:47 I did hear from a nurse in the hospital I go to, that you'd only ever get into trouble when there's a lot of air in the line. 11:33 You did only use one finger. 12:54 I noticed a jump here. Did something go wrong?

Do you feel anything when they take blood like that?

I LOVE YOU SO MUCH

I assume that all the regime of your drugs are written down, right? While I don’t have a port I do a history with loads of drugs and regimes. While no one really knows it all, except my doctors. But, it’s written down for the husband.

Ive always wanted to donate blood because I see how important it is, but where I live (not sure if it’s different anywhere else) you have to be over 110lbs to donate and I’ve been steady between 98-100 since I can remember (I’m 20).. it’s really disappointing because I’ve been trying for 2 years to gain weight but it doesn’t look like I’m healthily able to do so.

@bbbabybear27

6 жыл бұрын

I had the same difficulties concerning weight gain, always super thin even though I ate a healthy amount. Working out (esp weight lifting) packed on muscle and brought me to a "normal" weight for my height. There are great videos on KZread, start small! Just my experience, it's not for every one, and now I can do things like donate blood and plasma :)

I tried donating plasma and I had a allergic reaction to the calcium citrate used as a blood thinner

Tell your nurse that the chemistry gel tube does not need to be rocked. Only the EDTA lavender tube need to be well mixed. Friendly reminder from retired medical technologist.

@christinahaim1876

6 жыл бұрын

Gerard V ...good to know. We are taught in our hospital to rock all the tubes just as a habit..they say it's better to mix even if not needed than to forget when it is needed.

@gverb1950

6 жыл бұрын

Believe me..... you won't go wrong following policy and procedure.

Does the saline go straight into your bloodstream?

@grifentei652

6 жыл бұрын

Dakota Anderson so wait it's okay to put liters of saline into your bloodstream?

13:27 pleases do not forget to add them in

I have MS and had an infusion of Solu-Medrol over a course of 3 days. Everything tasted like copper pennies.

@chasetonga

6 жыл бұрын

Emily Myers I get that taste in my mouth after taking Biaxin antibiotic. I end up eating more to keep the taste out of my mouth, but food doesn't taste as good.

Jaquie, I watched your live show recently and you had said that you and Janice didnt really like each other at first, I was wonder how did you get to know each other, and start to become friends ?

@gidgetgetscrafty

6 жыл бұрын

Kimberley Dunbar - I think they were forced to spend time together since their husbands (then boyfriends) are best friends.

I wish I was healthy enough to donate blood or plasma. Unfortunately, my medications and condition keep me from doing so TT

Since donors are so important, could you let me know if its a regular blood donation or a special procedure? I would consider being a donor 😊

@KokoroKage12

6 жыл бұрын

Stephanie G. If I recall correctly from my school blood drive, plasma is a special kind of donation that I believe takes like an hour because the machine will take out blood, separate the plasma from it, and send the rest of the blood back into the body. In addition, they only wanted AB types at my school drives as it's considered the universal plasma donation type. It's been years since high school so things may have changed a little. XD I just remember helping out at the drive and this one teacher spending a free period every year donating plasma. He got a super comfy chair and he'd just sit and read or grade papers. 😂 I'd personally suggest donating blood first and kind of getting aquainted with the whole process though. Some people thought it would be cool to be excused from classes for an hour plus but they freaked out during their donation cause it can be intimidating the first time. Better to be intimidated by a quick bag of blood than an hour long process.

I hope that one day they've wil find a cure your chronic illnesses love you

Sorry but that look like a lots of bathroom trip's after that much fluids is in you 😂😂 ..Happy to see you in good health after this infusions, i am glad that IVIG work's well for you..stay blessed..😃😇

Thx for the blood warning lol

Girll tbh.. you could've become a doctor...

@missequestrian3448

6 жыл бұрын

Selena Roz, right? Like a specialist lol!! Haha 😁😁😂😉😆

@selenaroz9318

6 жыл бұрын

Miss Equestrian exactly!! hahah

@juliehodgson9902

6 жыл бұрын

I've always thought that!

I have to ask, pushing all those fluids, don't you have to pee all the time?

@peachi3sweeti3

6 жыл бұрын

Jackie McGlasson I dont think she can take much liquid orally, so it's probably about the same amount of liquid that most normal people get in a day!

@jackiemcglasson4195

6 жыл бұрын

モリーMolly I just know from times in the hospital where I was just getting bags, it made me go a lot!

@jennylomsdal

6 жыл бұрын

Because of POTS and GP your body needs the fluids to work more "normal" so you dont have to use the restroom more due to it. The rate also can make a difference, for exaple if a rate is only 125ml/hr it will take 8hrs to infuse the liter. I know with my fluids if I run a couple liters in a short period it can cause more of a need to use the restroom but otherwise its good.

Maybe its just me but I feel like the opening music is too loud, scares me every time.

do you have a video where you explained what the tube/line you get the blood return from is for? i know you have but i'm confused as to why you can draw blood from it. i knew it was a line into your blood vessel (i think) but i didn't know it was so easy to draw blood from. (so sorry if this is a dumb question i am just super curious)

@mommamay01

6 жыл бұрын

Hannah The port allows her to introduce medications directly into her bloodstream since her gastro doesn't allow her to absorb medications when taken by mouth. The port goes into her heart, so when she pulls back it allows blood to flow into the tube/syringe. Pulling blood back allows her to be sure there are no clots or other obstructions and that her port is functioning properly.

@Hannahs8n

6 жыл бұрын

thank you so much! :)

I have been thinking over the last few days how amazing it would be if people could to bottle up service dogs energy (for example) and be able transfer and use it themselves. Just think of what we could do with it.

The nurse's gloves look really annoying. They look hard to work with.