😷 Mast Cell Disease: 1st Time On Continuous Benadryl Infusion 💉(10/26/18)
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- Опубликовано: 26 сен 2024
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*Do YOU have questions about CDI/Benadryl drip? Please let e know I and will try to address them with only as much as I know (which is not a lot).*
Hey y'all! So it has nearly been a week since my surgery. Surgery wise, things are looking great! But I'm still hospitalized due to a Mast Cell flare that become very prominent right after my surgery. I did not feel well enough to vlog until yesterday, but plan to keep up with it at a pace I can manage since it is a great hospital distraction (that and sleeping lol)! Also, the internet here is not great. It took my 3 hours to upload this vlog! So keep that in mind if you notice any glitches. Have a great day! :)
Chronically Jaquie 💖🙏🏻
I'm praying for you and I really hope they can get all this under control soon! I LOVE your channel and I'm so glad I found it! ❤️
You’re so right about this IV Benadryl shortage. It’s so incredibly scary. I need IV Benadryl almost daily and I was just in the hospital for 2 weeks and they had to jump a couple hoops to provide it. Same with my home health company. Like you said it blows my mind that there is a shortage of this medication when it’s such a life saving drug to SO many. I just don’t understand it. I’ve been on a CDI before and it helped tremendously, so I hope it helps you too Jaquie! I hope things stabilize enough to where you can go home❤️ Praying for you girl.
Oh my gosh jack how far along are u?? Lol jk 😊
Hi, I am on CDI. I have been on it 24/7 for over a year. They are trying to figure out a non IV treatment for MCAD (a form of mast cell disease) but nothing is working as well as the Benadryl. I am on a rate of 10mg an hour right now. Yours will probably be higher during the flair but I hope you can ween it down right away. My at home company is providing me with IV bags and Benadryl to put in it. A LOT of people are struggling with the Benadryl shortage. Dr. Afrin (THE mast cell doctor) has written about CDI pretty extensively. Oral Cromolyn (I drink it) helps with my low gut motility and abdomen distension. www.bloodjournal.org/content/126/23/5194?sso-checked=true
Don’t apologize for crying and freaking out. You have every right to be that way.
You looked so sad, it broke my heart. I am glad that the IV Benadryl is having some positive effects on your body. So many obstacles and hurdles to overcome but you keep soldiering on. Your inner strength is inspiring. Continuing to keep you in my prayers. 🙏🏻🙏🏻❤️❤️
I hope this flare passes quickly and you can go home soon. I am glad your mom and Harlow came to be there with you. We watch your journey and wish there was some way we could reach out to you through something more supportive than comments, but this is the way we can show support. So many people watching you are here for you in the way we can be. ❤️🌹
Get better soon Jacquie I love how your so positive even when such negative things happen to you in terms of your health love Jacquie your very inspirational to everyone
How can anyone not love Harlow??♥♥♥
🙏 Praying these bad bits pass shortly. 😳 omg an i.v benydril shortage... great. Don't stress over uploads, Just "talk to us" and we will see it when you can upload❤️ Edit to add: That pocket heart monitor...😒 while mine didn't have leads straight to it, was still annoying and heavy.
So sorry things are difficult for you. On a side note, I HATE. the IV "out of meds" beeping AND yes, I hate heart monitors ( I always get one). I sincerely hope Benadryl issues resolve shortly, and you're home soon. Hugs!
Sending hugs and prayers for recovery and return to home. Thankful you have Mom, Harlow and Judd for love and support. From Minnesota!
Get well soon your so strong jaquie🙏
Emergency room nurse here, with the Benadryl shortage going on we have started using famotidine and hydroxyzine for allergic reactions. Maybe that could be an option for you too.
Hydroxyzine user here and it helps with my MCAD
Hayley Pizzino i'm glad someone said something. That shortest has been a pin.
Oh my sweetheart! It’s very stressful for you....I’m really glad your mother is there and that you are being taken care of. I pray things all get sorted properly asap!! So much love and prayers and gentle hugs from our family in 🇨🇦 to you and keep us up to date just as you are able to, I know there are many worries but do everything you can and want to as a soothe and distraction from the constant issues. We are rooting for you super strong love! XO
Sending lots of prayers and hugs, and hoping tomorrow will be better :)
One time the nurses looked in my room and said "Oh she's eating a banana". LOL. At the time I was angry nobody seemed to care about what was happening to me but now it makes me laugh to think about it. Why is there a shortage on IV benadryl?? Benadryl is everywhere so I don't understand what would be the reason. Thanks for making these videos. I hope you get to go home soon. 💜
Harlo looked very happy to see you!
Worst part about being in the hospital is not being able to sleep. If your not getting woken up by the nurses, your being woken up by the beeping, that annoying beeping. Hopefully this continues benedryl will work to keep down the side effects and reactions. Take care of you and rest when you can. Remember you are allowed to be upset and have the emotions, take it minute by minute.
All the warm thoughts and wishes for you to feel better and get home quickly. You’re amazing.
An idea for the heart monitor thing that keeps falling. In the Dollar Spot at Target, they have these little waist band things that are soft and stretchy that people use to put money, keys, their phone, etc in when they go running. It might fit into that and not fall out? Or another kind of fanny pack thing? You could add one to your hospital go bag for next time.
Dang! I love that you set your boundaries with your doc.
I’m so glad you’re getting some stability with the CDI. You’re doing amazing. Through all the tears, pain, and frustration you keep moving forward. All my love and prayers girl. You’ve got strength like no other. 💪🏻
What is CDI?
You are a warrior. Thank you for inspiring me to keep strong as well. Please get your rest and heal. I am hopeful for you to find the correct treatments. May this week bring you blessings and joy!
Sending prayers for a speedy recovery and I’m glad they found a way to help your Mass cells reaction
Dear Jaquie! You are so strong and you give hope to so many people..I wish you all the best!
I hope you feel better soon.
You are beautiful
Crazy, seems to be a shortage of many medications lately. New to your channel and am so amazed at your strength. I am s chronic pain patient and know what I go through on a daily basis. Just want you to know that you are such an inspiration to me. You are continually in my prayers!
Your strength never ceases to amaze me. I know you deal with stressful issues but you always have such a positive attitude. Praying for you 🙏🏻
💗I can relate: the nonstop IV beeping, tele-unit annoyances, med shortages, etc! So tough being in Hosp. Stay strong Jaquie, and positive as you do. I’ll be thinking of you and wishing you get better soon, have less pain & can go home ASAP.💗👍🏻💕💕💕💕💕
Harlow’s arrival definitely cheered you up!
Hang in there girl! You have come a long way. Glad you got the CDI. It looks like it helped a lot. Tomorrow will be a great new day!
Glad the drip is working out. You looked so much happier at the end of your video than at the beginning. It was clear you were feeling better.
Thinking of you all and sending you all best wishes.
Early to a Chronically Jaquie! I hope you feel well soon!
God bless you I have a lot of medical problems to in and out of the hospital keep your faith up everything I pray gets better love you and your videos
Prayers for speedy recovery..... I have my first back surgery on the 6th please pray as I have a kidney infection and on antibiotics already .. then surgery ... I've been bad and my Celiac is flaring so bad .... but I'm going to push thru ....
Please make sure the doctor's will properly manage pain after surgery. This is something many are being subjected to, it's a disgrace. It's an important conversation to have.
Hope you feel better soon. Praying for you
I hope everything goes smoothly and you can find ways to get better 💙
Many thoughts and prayers for you. Thank you for sharing... you are very inspiring and helpful with your info. It's always So Good to see beautiful Harlow in your videos, and so glad that she could spend time with you, and your mom. Take care...🌹💕💐
Never apologize for your frustrations and tears I'm going to continue to have you in my prayers as well as your family and Harlow 🙏✝️🙏 When go back to church I will light a candle for you and your family 💗
Perfect video to pass the time while I wait for my flight!
Oh my goodness, Jacque! I know what you are going through, somewhat, right now. I hope the CDI is helping. Right now, my skin looks almost as bad as yours also from a medication reaction. It started last week and I finished a whole box of Benadryl. This morning, I had an injection of Kenalog, still taking benadryl, and putting on topical benadryl. Still itching, just not as bad. So, hang in there and know you are not alone at this moment in time.
Sending you love and prayers. I suffer from a chronic illness that has tons of pain attached to it and I want you to know that your videos help me in so many ways. I am admitted to hospital quite frequently and so I can definetly relate to the whole hospital experience and all the beeping from the equipment. Praying for you to have healing and God's strength to help you.
i love u and your videos! sending lots of positivity and love your way !!! hope you feel much better soon and remember keep moving forward!!
It think the CDI makes a LOT of sense and am happy to see it is working well for you thus far. Hopefully today was even better. It is such a blessing to have your mom and Harlow nearby during these hard times when Judd isn't available. Your mom is a rock star staying the night on that little couch just to be by your side. Feel better, Jaquie. xoxox Heather🇨🇦
Praying for you Jaquie! 🌺
Love you Jaquie. I always have you in my thoughts. Hopefully you can get home soon, but do not rush it hun. Give hippo a hug for me if you see this.
Sending love jacquie (im in the hospital as well right now because of my urea cycle disorder. Chronic illness has so many downs)
Stay strong girl!!
Feel better soon!
Bc of you i am on my way to finally get a diagnosis wich is eds i have been searching for so long but i will have a awnser for my pain so soon . Thank you
Sending you my thoughts Jaquie from Australia xx
Sending prayers and blessings your way love. I hope I find you feeling better, sooner than later. Much love to you and your. 🖖🏻🤞🏻🙏🏻🤟🏻💜
You are so brave! I really hope you'll be feeling better real soon!
Hi Jaquie, Your first priority is your health. You don't need any extra pressure like uploading everyday. You never have to apologize for anything. We will be here for you. God bless you honey. You are so sweet.
I've been on the CDI for a year now (400mg per 24 hours). It has literally saved my life!! Unfortunately the whole US is in a shortage and it has been taken away completely. No infusions or bonuses available at home or inpatient where I am. It's insane. I hope the CDI helps you through this and the shortage is resolved for all of us!! Hugs 💜
The teleunits are made for hospital gowns, and they are much more manageable that way. When i'm in the hospital I like to wear my own clothes, but if i'm on a teleunit I wear a gown and it's much easier
Jaquie I hate the tele too!! drives me crazy too. I'm glad your surgery went well, Im sorry things are really rough right now, just hang in there! Stay Positive you'll get better hugs..
The Benadryl really does work.
We still bolis mine. That is terribly upsetting about the shortage.
Paige Marshall It's terrifying. Not around my severe allergy enough to need an epi pen but being in a medical environment when needed and when out....😳
I hope things get better for you.
Sending you all the strength and love
I am so sorry you are having such problems, as if you need more. I am glad the CBI is working for you, your tummy looks so bad and I am sure it hurts like hell. Hang in there hun, you got this. Take care
oops meant CDI.
When I’m in the hospital I always have to go an telemetry, and I bring a robe with pockets from home. My hospital has scrubs made for it, but I like to wear my own clothes.
It's great that your doctor is so willing to keep an open mind to try new treatments👏💜. It seems, in this day of CDC rules and "guidelines" that are threatening patients and doctors alike, that patient care has taken a nose dive with so many of our medical personnel. We have to remember, when we find that fantastic doctor, PA, nurse practitioner, surgeon.. to thank them. Remind them that we appreciate what they do and why. Hang in there Jaquie! #zebrastrong 🦓💪💜
Hope everything works out. Lots of hugs, love and prayers for you!🤗🤗🤗❤❤❤
I'm hoping that things are better for you know. I believe that the stress of all those surgeries most likely caused the severe mast cell flare. I'm sso glad the continuous Benadryl drip helped you. That's crazy about the shortage. I hadn't heard about that. I hope you will be discharged
soon. Staying in the hospital can get so depressing. Of course everyone loves Harlow. Why wouldn't they? She's precious.
We hope you are starting to feel better Jaq! From my family to you, we are thinking of you!
It’s so encouraging that your going through all these surgeries with a positive attitude. I know it probably doesn’t matter but you have a typo on the date (10/29/2019)
I understand your Benadryl issue. Along with other meds like phenegran. Today was the first day in two months that I was able to get it
LOVE and PRAYERS ALWAYS from Gainesville Florida.
I feel very bad for you ! I can tell you are really struggling but your also still fighting. I said more prayers for you.
Happy Halloween everyone 👻 🎃
I hope you feel better very soon 🤗😃😃😃
HUGS!!!!!
There is a nationwide shortage of IV Benadryl. It's hard to get here in TX. I believe it has to do with where it's manufactured...in Puerto Rico. They are still hurting from the hurricane
You have got this miss jaquie xxx thinking of you
Praying for you
There is 2 minutes of blackness at the end of the video?
Strength, Freedom, Assistance Dog ok? What do you expect her to re upload the whole thing
tears are a good thing jackie. no need to explain or apologize. WE understand. ❤️👍😀💪🙏
My allergist wants me to call Dr. Afrin, he specializes in CDI. Unfortunately my insurance doesn't cover it and I have yet to hear back about anything.
Hopefully this can help you & you're able to share your knowledge with us. 💜 Praying for your recovery out of this horrible flare 🏥💕
Feel better!
Poor mama's I really hope you get some relief
We are all with. I wanted to hug you (but I can't hug anyone sine I have a torn rotator cuff! ). Hope you're home soon with things under control!
I hope you many good days jackie!!! ♥️♥️♥️♥️♥️
I’m here jaquie for you hug hugs 💋😘love you girl
I'm im the hospital and when your pole beeped I thought it was mine.
My ER only recently have stock of Zofran. Just because the factory wouldn't make them faster. Gah! Shortages are awful.
Manifest is great.
You’ll be alright.
Keep you chin up and keep moving forward. I appreciate you sharing your videos with us. I’m sending my warm fuzzies and positive thoughts to you via the internet. 💓💓💓
PLEASE don’t apologize for crying and being unable to answer us I am praying to u that this difficult time will pass quickly 🙏🙏
I know you've had issues with constipation, you need to be actively combating it while you are on constant benadryl. It's caused me issues with my mast cell.
Hi from Colorado. There is always hope with God's love. God bless.
What happens if you get to the point that the Benadryl doesn't work anymore for you? It might be a shortage there, but there are many of hospitals whom can probably send some to that hospital if need be, just like snake venom.
Wishing you well always
Love from Houston
Someone vitals were dropping in the background!
Poor Jackie :( Stay strong and keep moving forward💪
Manifest is so good!
I had no idea there was a Benadryl shortage. I live on iv Benadryl every 4 hours. Have you ever tried a histamine / tyramine restricted diet? It's kind of difficult at first, but once you get the hang of it it's not too bad. I can explain it to you if you want to try it. Nmethylhistamine is one of the things that causes severe food poisoning. When you mix your mast cell disease with all the other health complications you have now, may be contributing to the bloating, nausea, and abdominal pain. Histamines can be found in all foods to some degree. The amounts that are in tpn and tube feeding formulas are higher than one would expect. That explains why many masties continue to experience gi issues after switching to tpn or formulas. The following are suggestions that have helped me in the past. DO NOT try them without consulting your doctors first! Gi discomfort from mast cell issues and bacterial overgrowth sometimes responds well to literally draining the "crap" out by hooking a urinary drain bag to your jtube and leaving it open 24/7 until symptoms improve.A one time giant whomping dose of iv dexamethasone sometimes help settle mast cells down. Taking diamine oxidase can help decrease exposure to histamines in food. Taking 1tbsp of children's liquid benexposureadryl(not pills, you want the volume to coat your stomach) mixed with 1 tbsp pepto bismol 30 minutes before eating, coats and numbs everything decreasing symptoms. I know this one is hard especially when you're in the hospital I'm not feeling well,. Getting up and walking and moving around is one of the best non-invasive ways to try to remind your system it needs to keep on moving.I'm so glad the surgeries went well! You are a trooper!
Supporting the diet -I only have the intolerance to histamine, but know many people with mast cell issues & the diet is the same. You do really get used to it, I just miss the spices now.... Has helped a ton. What I found most effective to cut out, apart from the obvious histamine-high foods, was sunflower oil. That always gives me baaaad flares ..
Chlorpenamine (Piriton) could be a good alternative to the Benadryl if there’s a shortage. It’s what I use when my allergies flare here in the UK xxxxxxxx
I'm glad the surgery was a success. I'm meeting with a surgeon tomorrow, I hope he's as good as yours!😊 I pray God brings you comfort during this trying time.💖 Also Happy Halloween!🎃
Benadryl and saline seems to having shortages recently and it is very frustrating.
K Williams yeah the saline is short cuz they use it 24/7 on anyone who comes in when it needs to just be used on those who need it like ones who are sick or are tpn before or after surgeries etc lol
Miranda Stephens actually it’s due from last years hurricanes. But I’m sure over and unnecessary use isn’t helping
I might end up in the hospital tomorrow for a abscessed tooth on the way to the dentist today me and my mom got pulled over by Ohio state highway patrol