Hey Jaquie! Just to ease your mind, when I got my PICC pulled out, I literally turned my head so I wouldn't have to see, but then she [the nurse] was like "ALL DONE! :)" and I turned back and it was out. The only thing I felt was her pressing some cotton to the hole. No pain, no "spaghetti being pulled out" feeling. It was quick and easy! My sister was more freaked out than me because she watched it being pulled out. She said it was whipped out super fast, and what freaked her out was that it looked like a looooong needle. I think it was just because the tube is a bit stiff. Anyway, I'm catching up on your adventure right now, so you're probably getting loads of PICC reassurance already. Hope you're getting out of hospital soon! All the best from the UK xx
I just had my PICC line done on 11/28/18. My Gastroparesis got to the point I was not tolerating sufficient feed rate for nutrition, or max of 15 ml/hr, without HORRIBLE pain. Now, they don’t know why, but the PICC site is causing me some throbbing pain. Mine was done at bedside, and was less painful initially even after the Lidocaine wore off. They said this was normal, but would order an x-ray. Now, because of a backlog in the hospital, they may want me to discharge and come back if I have symptoms. I am kind of having symptoms now, and don’t like the whole “coming back” idea with issues. I don’t like being in the hospital, and I’ve been in the hospital currently since the 17th of November. It is the 4th of December. SO frustrating.
Since I was 20, I have been battling Crohn’s disease for 30 years now, I’ve had and total 17 PICC lines over the years. But with everyone, I was never nervous and I never really felt anything, probably because I was so doped up, or because I’ve already had 37 of the most brutal surgery as you can imagine, all I know is that getting a new line meant nutrition and strength, so it was always a positive thing for me. I’ve never had to go on it permanently, but come this January, that’s about to change, and I’m about to have to start TPN for life, as I’m down to less than 5% off my entire G.I. tract, and my body cannot absorb any more nutrients, and I’m losing weight every single day since my last surgery November 16. I’m at my wits end, I’m nearly 6 feet tall and I’m down to 140 pounds, I’ve never been that light in my life, and I keep losing, so this line is going to be my savior. Between the line and Jesus, is the only two things that I’m going to keep me on this earth, because anything Short of that, and I will die. I’ve been dead ones and nearly twice more over the past 30 years, right now my life hangs in the balance, and I’ve given up for the first time ever because no matter what I do, I have nothing but the city water pouring out of my stoma, about 4 to 5 L a day, no matter how much I try to eat or drink, I’m constantly do you hydrated, and lose at least 1 pound each day. To those of you who are healthy, do you have absolutely no idea how lucky you really are, because I would give anything to feel healthy just for one day! This disease has completely destroyed my life, my finances, and my future. At the age of 46 I was forced to retire and go on long term disability, I just turned 50 but I don’t see myself living past 51, and at this point I don’t want to if this is all that life is going to offer. My last hope is this TPN, because if that doesn’t work, I’m as good as dead, which really pisses me off because I fought so hard for the last 30 years to stay alive, especially given that all the treatments have given me 11 other chronic illnesses, not to mention having to endure three rounds of intestinal cancer that came along shortly after my diagnosis of Crohn’s disease. Frankly I’m surprised I’m still alive, and I could live without money, which I do already, I’ve used every penny I ever had just stay alive during those times the insurance company would cut me off for no reason, I could even live with all the other diseases, but I cannot live like this, constantly losing weight and having no energy to do or go anywhere. I know I’m a total stranger, my real first name is Eric, if you’re Religious in anyway, please, say a prayer for me, I’m usually never this forward, but frankly desperate times call for desperate measures and I need all the help I can get. Thanks for the video, and I pray that The TPN works well for you, please keep us posted on how you’re doing, and if I’m still alive I’ll try to do the same.
We do PICC lines at bedside all the time - and thank the lucky stars you dont need an IJ or any of those neck central lines. Good news: you can deaccess your port, which will help your skin around that area. Plus the RN can draw labs from a PICC line if you get orders. TPN is OK, but given your history, be sure you get your anti-nausea meds before they hang that white bag of lipids, lots of patients get initial nausea at the start of infusion for the first 30 minutes or so.
So glad the picc is placed and working! I've had 7 picc lines which has left me only one vein that can be accessed for PICC. The last picc I had the IR Dr could hardly thread it through thanks to all the scar tissue from previous piccs. On the study they saw that my subclavian has actually rerouted to smaller vessels. Obviously PICCS can be both helpful and necessary for treatment, just unfortunate when they have to be repeatly placed. The IR Dr who did my study recommended that at my age (26) consideration of future access be considered before central lines are pulled to prevent going from limited, to no access. Thankfully I have a port now for my infusions, and my TF are working. I KNOW how incredibly frustrating it is to have to go on TPN because other treatments aren't working. Praying this is a short term problem for you, that the FT infection resolves soon, and you can quickly bounce back afterward!
Hi Jaquie! I'm on a diet and I'm not eating as much and right now I feel awful! I feel sick but not to hungry and I'm thirsty but whenever I drink I feel even worse. Seeing your videos motivates me so much seeing how you deal with your struggles. You are awesome! Stay strong!
I hope you feel better soon! I am 13 years old with suspected pots and many other things so I am having a bad flare up , MY WORST... so i have been admitted to the hospital for the first time ever so thank you for the support and inspiration
Hi, Jaquie I’m sorry that you’re in isolation. It can be rough and a little disheartening. As part of the protocol, don’t visitors and medical personnel need to be in special over-garments? In my experience, people who come into the room would wear disposable gowns, gloves, and masks. There would be no direct contact so as to prevent the possible spread of infection. Also, is not Harlow capable of becoming a carrier? I’m going by my own experiences and what I had to go through. When the PICC line comes out it is an easy process. They just pull it out and slap a bandage on your arm. One less thing to worry about 👍!
After your last video, I prayed the procedure would go well for you. I’m so glad this is over! We all care about you and hopefully this will give your body the fuel it needs to fight! 😀😀😀😀😀
anyone heard anything about Jaquie? im sure shes just resting, but normally she will at least post a comment letting us know,no insta update either.... i think she was suppose to go home today. im just worried, but like not trying to push for a video but i care about her.
Girllllll gonna say a prayer for you I have esophageal issues the past few years which leads to nausea vomiting and malabsorption and I had the get potassium through an iv and it HURTS LIKE HELL!!! I hope things go well for you and I wish you luck and hope you feel better soon
I had 2 picc lines worst thing Ive had, bc I am allergic to adhesives, so my arm was constantly itching. But hopefully yours doesn't bother you and it will keep you feeling better!!🤗💖 I got a Portacath Which I still have and it is the best decision I ever made.😉
So glad you get the help you need and hopefully you get back home soon :-) seeing the picc and lines just trigger a lot of bad memories - Im so thankful not to have to be coniclly battling ♡ sending you payers
heykay15 from my knowledge most of the time there is no known cause of tube infections. However Jackie has a weak immune system so that could be a factor, also as far as I know she still has the mersa infection in her body so it could be a secondary infection. However idk I’m not a doctor. I’m just making somewhat educated assumptions
I have a holter-heart exam tomorrow, and I'm pretty nervous because I'm always reacting to the sticky part on the electrodes... Also, why do you need supervision to deacces (I have no idea if that's correctly spelled), since you can do it on your own?
Because of your vlogs, my husband and I have started playing Trouble all the time! I'm glad something small brings you so much comfort during your stays! :)
It was crazy when they removed my PICC line, when they put the line in I was still under after a surgery so I had no idea how long it was but it comes out super quick and I didn't feel a thing! Hope you get better soon! :)
Praying for quick recovery! And praying you can go home soon when your well enough! Do you take medication for Anxiety or depression? I've always had anxiety and depression, So when I got ill with all these conditions it did not help. I see mental illness as a chronic illness as well.
hi i am getting a picc line in tomorrow how long after the insertion did they let u leave the hospital and was it painfull at all like what u rate out of 10
Jaquie, I really hope you are resting well and getting stronger! I pray for you all the time and I’m glad you’re taking breaks when you need them! I understand you may not be up to responding to my comment, but I hope it reaches you nonetheless! Wishing you the very best!
When I did my picc line, they did it I.R. They weren’t going to give me any type of calming meds and I basically had a melt down. I don’t deal with unknown medical procedures that I’m going to be awake for well at all, lol. They ended up giving me versed. When it was over I thanked them for giving me the meds and the nurse made a comment about in her 30 yrs as a nurse she hadn’t had to sedate anyone over the age of 5 for that procedure. I told her she would be doing it again if I ever have to have another one, lol
And yes Brenda and Senpais, she was very judge mental and needs to learn what phobias are and that some phobias don’t go away just because someone is an adult.
When I got a PICC line placed I felt EVERYTHING. I have EDS too and Im not sure if I just metabolized the medicine too fast as well? I've never had that happen to me before aside from the PICC. I was screaming and crying the whole time, it hurt! :((( I had a triple lumin though, so maybe it was different? Getting it pulled out was like finally itching a scratch! It felt like a spaghetti noodle coming out of your arm, its funny thats exactly how they described it too! NO PAIN!!! Well wishes! I'm glad your PICC line placement was easier than mine. Get well soon.
I wish I could give you a hug . You are so strong and smart and kudos to you for hanging in there in a poopy hospital I dont think I could manage If I were in your position but Im happy to hear your doctors and nurses are working hard to help you !
I have foundrjat on my port its easier to have the needle's tubing facing across my chest, instead of straight down. Also I use a secure sticky (idk why I cannot remember the name right now lol) you pull the line into it and there is a velcro tag that helps a ton in it not pulling up the dressing. Ill try to remember to post you the item number
Hey my love I watch your vlogs all the time, I can honestly say I have gone right back to the bigining and watched every single vlog at least twice as your so positive with all the issues you have your a real fighter and iv never seen anyone fight as much as you!!! I just wanted to say soooo when you gonna be sponsored by the game trouble? Iv never heard of it before seeing your vlogs and I realy wanna try it so I'm gonna see if we have it in England and buy it and every time i play it I'll think of you dude!!! Take care my angel loads of love vic from the (Two-veez )youtubechannel xxxx
You are so brave! I just think you are wonderful and appreciate your vlogs. I hope it doesn’t creep you out when people says they think of you often but you are a constant positive in my life and a role model of how to keep moving forward with my chronic illness, so I do wonder how you are doing and pray for you when I think of you. 🤗 hello to Harlow
Jacquie, you are an inspiration to me. Your faith is inspiring !!! I pray that you find comfort, peace, and strength in what God has in store for you next! I love your family and you are so blessed to have such a strong familial support system!! ❤️❤️
I know life is crazy in the hospital and you’re busy getting better but just wanted you to know that our family is thinking of you. Even when you take time off from vlogging we continue to pray for your lovely little family. May God bless you and keep you in his loving arms in this hard time. Hugs from the Martinez family. ☺️
You’re lucky that with your mast cell you don’t react to Tegaderm and all of those adhesives. Most people with MC can’t use anything except IV3000 which is frustrating because hospitals don’t carry them.
I don't see where you posted about the Tegaderm from? Did I miss it? It would be perfect for me! How was it like getting potassium through your IV? For me it sometimes burns? I know I'm late for this vlog but if you have to get another one ask for ice pack if they burn too bad or ask if they can refrigerate them first! Just a suggestion
PICC Lines are great, I've had two for TPN.. I've had a permanent feeding tube in my jejunum, for almost four years now. Good luck, hope you are feeling better soon!
My picc line was a god send so I didn’t have to have so many pokes. My picc bled a little so we had to change the dressing in the hospital. You can’t feel anything when they pull it either and the scar is small.
Does dysautonomia also cause high blood pressure? I haven't been diagnosed with it, but, I have been having trouble with regulating my blood pressure. Sometimes, my systolic readings are as low as 90, and sometimes they are as high as 150. Average for me is 110.
I hope your feeling better now that your getting some better nutrition. I pray your infection clears up fast and look forward to watching your vlogs again when you are feeling better. Keep moving forward. ☺
I have a hard time whenever I have to have a line put in my arm, for I am allergic to adhesive and those white and clear ones where they are placed starts turning red underneath and start itching. So we have to use paper tape on me. And as you know paper tape does not hold up well. So I am always having to keep pressing it down to hold the line in. I do not have chronic illness like you do but I have some issues. But only need lines when am in the hospital.
I have had a PICC line for about 6 months now. I use it for TPN as well. I am in the process of getting my dog trained as Service Dog by Medical Mutts, the funding process is going kind of slow I have a GoFundMe page set up....
My friend was in the hospital she just got home today she was there for three weeks and she had a picc line put it she told me it’s sucked we have the same birth defect called spina bifida so she had to have one put in because of complications
Ports can be finicky....and annoying. I had the same thing. PICC Lines aren't that bad to have inserted. ( I've had 2 of them) The only thing I felt was the first "stick"...you do feel that, but it's minimal, honest. Actually I had ( both of my PICC lines) the PiCC lines placed without any medications, etc. They did offer versed, but I didn't really need it. I was put under a local when I had the first Port and because it was my first port and had never had a port inserted, I hardly remember the Dr. doing the surgery, I actually didn't remember much about the 2nd port placement as well. Jaquie you're doing a great job with everything you're going through. My last Port I've had for 6 yrs ! Judd is such and awesome husband! #BestHubbyJudd
I started out with a picc and my placement looked like a murder scene lol i bleed a lot. I am on tpn indefinitely due to gp and intestinal dysmotility. Did you get really hot while sleeping when tpn was introduced? I had horrible hot flashes when i started in the hospital. Hope it helps but isn't permanent.
I had a PICC line when I was 14after I had orbital cellutis that almost took my life and I was put to sleep to get it. It was a children’s hospital tho so maybe that’s why.
I love my picc line , my mast cell caused so much blisters I finally got my dressing way different I can’t hang with it tangling I am scared of a port but love my picc take care doll
That may be an extremely stupid question, but how can you put multiple bags on just one PICC access? Do they get mixed somewhere so that they can all go into the same tube? ;)
Amy Gn I think they would just run the antibiotic then when it was finished then run her fluids or potassium or whatever is needed so they don’t mix because that can cause reactions. If it’s something like a small dose of Benadryl that won’t take a long time to run they probably pause whatever is running, push saline through the line to clean it out so it doesn’t mix, do the Benadryl, more saline, then hook back up to whatever was running.
Not stupid at all! Two lumens is essentially like having 2 ivs coming out of one hole in the skin. Each lumen is in a separate place inside so that the contents of each iv are not immediately mixing together at the end of the plastic tubes inside. Many drugs have a direct chemical reaction with TPN and mixing the 2 directly, causes what they call precipitate(ie. tiny chunks). As you can imagine, chunks of anything are not good to have in your blood. This can be prevented by majorly diluting the drug. Doing this, means you would have to use an iv pump and spend 30+ minutes infusing a medication you could push in with a syringe over a minute. You avoid this they use a 2 lumen line, by having the TPN and medication come out a separate places(2 lumens). When you do that, your blood dilutes the medication so you don't get precipitate chunks in your blood.
So glad the PICC line is working!!...also when I heard your getting straight potassium. ..OH BOY does that hurt with a straight IV...burns the whole way up till you get to a large vein...but with the PICC..you should be able to avoid that since it is going to a large vein..if you have the burning sensation..ice helps..ALOT!!...praying for you!
I had a picc line placed in my neck for around three week bc I was receiving dialysis and it was so annoying feeling the two little tubes bounce with my pulse against my neck 😣😐
that's crazy that they have you on TPN but they're letting Judd bring you Olive Garden. I thought TPN was a last option for people who can't eat orally?? Why don't you just drink the Kate Farms shakes like you've mentioned before?
I really wish it were that simple. If I could just drink enough Kate Farms oral shakes, I wouldn’t need tube feeds or any other form of supplemental nutrition to begin with. I believe you are recalling the various times my previous feeding tubes would kink, and I would have to manage a few days without my feeds until it was replaced. For that, sipping on Kate Farms for 2-3 days is feasible. But with this hospital stay I am going on two weeks of not being able to run feeds well. I’ve already lost some weight and back tracked. I’m doing as much oral intake as I can, but it isn’t enough. Just because someone requires supplemental nutrition does not automatically mean they are NPO. My doctors encourage me to eat. So yes, I had soup. But a few spoonfuls does not constitute nearly enough of what I need. If I cannot eat/drink enough and I cannot run tube feeds, the next option is short term TPN to get me through this abrasive treatment. Once the infection has cleared and the IV antibiotics are complete, the PICC should be pulled and I will be back on my feeds. My doctors (which includes a dietician) are working in my best interest.
TPN is not a complete long term replacement if any oral intake is possible. Oral intake is almost always better for the patient, it keeps the stomach and intestines working.
She cannot sustain herself on oral intake (1st line of defense), now her feeding tube (2nd line of defense) isn't working, so they are to TPN (line of defense 3) until the feeding tube works again. Also remember that with her gastroperesis and no g tube, she can have vomiting spells, so those few spoonfuls she can eat may be thrown up later.
I'll try not to repeat too much of what's already been said here. In order to heal and overcome this infection, Jaquie needs LOTS of protein and with her other issues, she is unable to get the amount she needs by other means right now. J-tube infections are hard to clear because the bacteria in your intestines(ie, poo) leak outside of the intestines onto the skin. Tpn is the best way for Jaquie to get the nourishment needed to beat this. Most people on tpn are strongly encouraged to eat what they can while on tpn. Tpn is very hard on your body and over time causes liver failure in many people. They have found that eating is the best way to ward off liver failure even if you are unable to utilize or absorb calories or nutrients from the food you eat.
I hope you get well soon 😊 I also have a question (or a few questions..) about your hospital rooms...😅 I'm just genuinely curious, because it's different here.. do you always have a room for yourself? Is is a private Hospital or is it because you have a service dog? - please keep in mind that all I have to compare it to is my local hospital here in Norway, where I have never experienced that anyone I know or myself have had a private room...😅
I am sure there are differences between the hospitals here and the hospitals in Norway, but I have a private room because I am on isolation. This is due to my history of MRSA and also because of my CVID. Basically it keeps myself and others safe (:
I think there has been vlogs about a previous hospital stay where Jaquie has been in a shared room. But here in Germany there’s also very rarely private rooms, if ever. And you mostly have to pay for it yourself if you want one (and also for WiFi, you have to pay for that too, if it’s offered at all)
AlienMissy 483 here in my local hospital in the uk there is free Wifi in emergency but once I went to a ward no Wifi at all. Some very limited internet services were available on the televisions that you had to pay per day to use. In the second ward I was moved to there wasn’t even cellphone reception so I felt very cut off and alone. Also I have noticed visiting seems much more open in the US. Here, unless you are a child there are set hours (usually part of the afternoon) when family or friends can come to visit. I have never heard of family being able to stay all day or nights like I have seen in some videos from people in America!
Thanks. When I watched the first time (within a few minutes of upload) it definitely wasn't on there, having come back to it again it seems to have appeared! All good.
Hey Jac...just letting ya know your so loved and on my mind and prayers always. Hang in there! Glad you have the banana bag and pic going, food is on its way :) Your color looks better today. xo P.S. I'm jelly, I didn't get anything to help calm me down when I got my pic. But it went fine and smoothly..I was afraid too, but was fine. :)
Jaquie, did the Doctors explain to you the reason why your potassium went low? I am praying for you. You are staying very courageous and positive, considering how long you have been in the hospital, and also facing more days there. I am so sorry.
Have you ever wondered why hospitals serve apple juice and orange juice in those little cups with the foil you peel off? You’re almost guaranteed to spill it. Why doesn’t it come in bottles? Just another one of the strange things about hospital stays. I hope you are keeping your spirits up and managing to find humor where you can, Jacquie.
Lord a PICC line... This is too real here. I’m surprised they didn’t sedate you and I had to go to the PICU every time I’ve had one. Be prepared for frequent changes and good luck. ❤️
Claire Elizabeth I have had 3 PICC lines placed, I was awake for all three and went home after the procedure. It was so easy. I now have a power port and was awake for that also. It was great and went home right after they were done with no meds for any of the procedures. I have an incredible Doctor!!! I was on TPN for months, hated it. Now have a J-tube for feeds, out patient too. All is good, no more TPN, just meds and tube feeds. Headed in the right direction.
Hey Jaquie! Just to ease your mind, when I got my PICC pulled out, I literally turned my head so I wouldn't have to see, but then she [the nurse] was like "ALL DONE! :)" and I turned back and it was out. The only thing I felt was her pressing some cotton to the hole. No pain, no "spaghetti being pulled out" feeling. It was quick and easy!
My sister was more freaked out than me because she watched it being pulled out. She said it was whipped out super fast, and what freaked her out was that it looked like a looooong needle. I think it was just because the tube is a bit stiff.
Anyway, I'm catching up on your adventure right now, so you're probably getting loads of PICC reassurance already. Hope you're getting out of hospital soon! All the best from the UK xx
I just had my PICC line done on 11/28/18. My Gastroparesis got to the point I was not tolerating sufficient feed rate for nutrition, or max of 15 ml/hr, without HORRIBLE pain. Now, they don’t know why, but the PICC site is causing me some throbbing pain. Mine was done at bedside, and was less painful initially even after the Lidocaine wore off. They said this was normal, but would order an x-ray. Now, because of a backlog in the hospital, they may want me to discharge and come back if I have symptoms. I am kind of having symptoms now, and don’t like the whole “coming back” idea with issues. I don’t like being in the hospital, and I’ve been in the hospital currently since the 17th of November. It is the 4th of December. SO frustrating.
When my PICC was pulled out of my neck it felt funny, but it didn't hurt. So glad you're getting some nutrition! God Bless.
Since I was 20, I have been battling Crohn’s disease for 30 years now, I’ve had and total 17 PICC lines over the years. But with everyone, I was never nervous and I never really felt anything, probably because I was so doped up, or because I’ve already had 37 of the most brutal surgery as you can imagine, all I know is that getting a new line meant nutrition and strength, so it was always a positive thing for me. I’ve never had to go on it permanently, but come this January, that’s about to change, and I’m about to have to start TPN for life, as I’m down to less than 5% off my entire G.I. tract, and my body cannot absorb any more nutrients, and I’m losing weight every single day since my last surgery November 16. I’m at my wits end, I’m nearly 6 feet tall and I’m down to 140 pounds, I’ve never been that light in my life, and I keep losing, so this line is going to be my savior. Between the line and Jesus, is the only two things that I’m going to keep me on this earth, because anything Short of that, and I will die. I’ve been dead ones and nearly twice more over the past 30 years, right now my life hangs in the balance, and I’ve given up for the first time ever because no matter what I do, I have nothing but the city water pouring out of my stoma, about 4 to 5 L a day, no matter how much I try to eat or drink, I’m constantly do you hydrated, and lose at least 1 pound each day. To those of you who are healthy, do you have absolutely no idea how lucky you really are, because I would give anything to feel healthy just for one day! This disease has completely destroyed my life, my finances, and my future. At the age of 46 I was forced to retire and go on long term disability, I just turned 50 but I don’t see myself living past 51, and at this point I don’t want to if this is all that life is going to offer. My last hope is this TPN, because if that doesn’t work, I’m as good as dead, which really pisses me off because I fought so hard for the last 30 years to stay alive, especially given that all the treatments have given me 11 other chronic illnesses, not to mention having to endure three rounds of intestinal cancer that came along shortly after my diagnosis of Crohn’s disease. Frankly I’m surprised I’m still alive, and I could live without money, which I do already, I’ve used every penny I ever had just stay alive during those times the insurance company would cut me off for no reason, I could even live with all the other diseases, but I cannot live like this, constantly losing weight and having no energy to do or go anywhere. I know I’m a total stranger, my real first name is Eric, if you’re Religious in anyway, please, say a prayer for me, I’m usually never this forward, but frankly desperate times call for desperate measures and I need all the help I can get. Thanks for the video, and I pray that The TPN works well for you, please keep us posted on how you’re doing, and if I’m still alive I’ll try to do the same.
Praying for your speedy recovery Jacquie!
yes praying
Sending Prayers 🙏 Date Night 💕🐾💛🌟💫✨
We do PICC lines at bedside all the time - and thank the lucky stars you dont need an IJ or any of those neck central lines. Good news: you can deaccess your port, which will help your skin around that area. Plus the RN can draw labs from a PICC line if you get orders. TPN is OK, but given your history, be sure you get your anti-nausea meds before they hang that white bag of lipids, lots of patients get initial nausea at the start of infusion for the first 30 minutes or so.
Hi sweetie! I hope the PICC line is working well today and that the TPN is giving you some much needed energy xxxxxx
So glad the picc is placed and working! I've had 7 picc lines which has left me only one vein that can be accessed for PICC. The last picc I had the IR Dr could hardly thread it through thanks to all the scar tissue from previous piccs. On the study they saw that my subclavian has actually rerouted to smaller vessels. Obviously PICCS can be both helpful and necessary for treatment, just unfortunate when they have to be repeatly placed. The IR Dr who did my study recommended that at my age (26) consideration of future access be considered before central lines are pulled to prevent going from limited, to no access. Thankfully I have a port now for my infusions, and my TF are working. I KNOW how incredibly frustrating it is to have to go on TPN because other treatments aren't working. Praying this is a short term problem for you, that the FT infection resolves soon, and you can quickly bounce back afterward!
Hi Jaquie! I'm on a diet and I'm not eating as much and right now I feel awful! I feel sick but not to hungry and I'm thirsty but whenever I drink I feel even worse. Seeing your videos motivates me so much seeing how you deal with your struggles. You are awesome! Stay strong!
I hope you feel better soon! I am 13 years old with suspected pots and many other things so I am having a bad flare up , MY WORST... so i have been admitted to the hospital for the first time ever so thank you for the support and inspiration
Sending positive prayers for you and Judd. You inspire me.
Also so crazy that they give sedation for a PICC! We sure don’t! And i didn’t have any! It’s a super quick procedure
Just curious what antibiotics you are on? I’m a nurse so I love hearing about that stuff!
A mini fridge in a hospital room...I laughed out loud!
I know right! I felt really silly after saying it... Like DUH it is not a hotel. I meant to say there is no way to keep leftovers :P
There are mini fridges in my hospital hehe
Know that i'm thinking about it.. the need a hospital wing for longer stays! with amenities! Just sayin
They might have some by request. Mini fridges might be available for patients pumping breastmilk or if a patient has a special diet!
Here in brazil most hospitals have mini fridges! All the ones I’ve been in had one. Not so silly after all!
Hi, Jaquie
I’m sorry that you’re in isolation. It can be rough and a little disheartening. As part of the protocol, don’t visitors and medical personnel need to be in special over-garments?
In my experience, people who come into the room would wear disposable gowns, gloves, and masks. There would be no direct contact so as to prevent the possible spread of infection. Also, is not Harlow capable of becoming a carrier?
I’m going by my own experiences and what I had to go through.
When the PICC line comes out it is an easy process. They just pull it out and slap a bandage on your arm. One less thing to worry about 👍!
Are you all right? There haven’t been any vlog posts and you didn’t say you were taking a break.
After your last video, I prayed the procedure would go well for you. I’m so glad this is over! We all care about you and hopefully this will give your body the fuel it needs to fight! 😀😀😀😀😀
Awe thank you! I so appropriate the prayers
Chronically Jaquie I thought of you first thing this morning too and I keep praying for you!
@5:33 saw a fellow hockey fan in a Tampa bay lightning jersey! go lightning!
but also sending you all the love jaquie!!
anyone heard anything about Jaquie? im sure shes just resting, but normally she will at least post a comment letting us know,no insta update either.... i think she was suppose to go home today. im just worried, but like not trying to push for a video but i care about her.
Since you don't have a vlog up today. Wanted to wish Judd a "Happy May the 4th be with him day " :D
Joan Smith it's a shame she didn't at least let Judd vlog for Star Wars day.
Your looking a bit livelier in this video I hope the treatment is working and you will be back home soon love you Jacquie sweetheart
Do you ever worry about Harlow's gait with the front pull harness that crosses over her shoulders?
I feel terrible about this long hospitalization. You are a very brave and patient person. Hugs for you!
Girllllll gonna say a prayer for you I have esophageal issues the past few years which leads to nausea vomiting and malabsorption and I had the get potassium through an iv and it HURTS LIKE HELL!!! I hope things go well for you and I wish you luck and hope you feel better soon
I had 2 picc lines worst thing Ive had, bc I am allergic to adhesives, so my arm was constantly itching. But hopefully yours doesn't bother you and it will keep you feeling better!!🤗💖 I got a Portacath Which I still have and it is the best decision I ever made.😉
Are you ok? You have not posted since this video. It has been a long time
wolf girl right :/...
So glad you get the help you need and hopefully you get back home soon :-) seeing the picc and lines just trigger a lot of bad memories - Im so thankful not to have to be coniclly battling ♡ sending you payers
Good work!! So happy that the PICC placement went well for you :)💜
Thank you!
Jackie is there any way to know how your feeding tube stoma got infected in the first place?
heykay15 from my knowledge most of the time there is no known cause of tube infections. However Jackie has a weak immune system so that could be a factor, also as far as I know she still has the mersa infection in her body so it could be a secondary infection. However idk I’m not a doctor. I’m just making somewhat educated assumptions
She actually talked about that in another video, she took really good care of it but sometimes those things just happen
I have a holter-heart exam tomorrow, and I'm pretty nervous because I'm always reacting to the sticky part on the electrodes...
Also, why do you need supervision to deacces (I have no idea if that's correctly spelled), since you can do it on your own?
Just hospital policy. And good luck tomorrow! You can ask if they have hypoallergenic stickers which may help.
I hope you are doing ok? Its been a few days since you’ve vlogged. 😟
If you’re able to shower, will it be different with the picc than your port? I’m assuming it can’t/shouldn’t get wet either.
Because of your vlogs, my husband and I have started playing Trouble all the time! I'm glad something small brings you so much comfort during your stays! :)
YES best game ever!
I’m glad the PICC line placement went smooth! I’m really praying you can bust out of there soon! 💕
It was crazy when they removed my PICC line, when they put the line in I was still under after a surgery so I had no idea how long it was but it comes out super quick and I didn't feel a thing! Hope you get better soon! :)
Praying for quick recovery! And praying you can go home soon when your well enough! Do you take medication for Anxiety or depression? I've always had anxiety and depression, So when I got ill with all these conditions it did not help. I see mental illness as a chronic illness as well.
hi i am getting a picc line in tomorrow how long after the insertion did they let u leave the hospital and was it painfull at all like what u rate out of 10
I had a picc for TPN for 7 months last year. Felt soo good to have it removed.
Jaquie, I really hope you are resting well and getting stronger! I pray for you all the time and I’m glad you’re taking breaks when you need them! I understand you may not be up to responding to my comment, but I hope it reaches you nonetheless! Wishing you the very best!
When I did my picc line, they did it I.R. They weren’t going to give me any type of calming meds and I basically had a melt down. I don’t deal with unknown medical procedures that I’m going to be awake for well at all, lol. They ended up giving me versed. When it was over I thanked them for giving me the meds and the nurse made a comment about in her 30 yrs as a nurse she hadn’t had to sedate anyone over the age of 5 for that procedure. I told her she would be doing it again if I ever have to have another one, lol
I get anxious with procedures too, especially ones I have not had before. The IV team was so reassuring though and like you, I also got versed.
That nurse was a judgemental so and so. I feel sorry for any six year olds he or she inflicts.
I am so glad you had a reassuring team! And I hope all is improving and you can run your feeds soon.
And yes Brenda and Senpais, she was very judge mental and needs to learn what phobias are and that some phobias don’t go away just because someone is an adult.
Feel better soon, Jaquie! You inspire me so much
When I got a PICC line placed I felt EVERYTHING. I have EDS too and Im not sure if I just metabolized the medicine too fast as well? I've never had that happen to me before aside from the PICC. I was screaming and crying the whole time, it hurt! :((( I had a triple lumin though, so maybe it was different? Getting it pulled out was like finally itching a scratch! It felt like a spaghetti noodle coming out of your arm, its funny thats exactly how they described it too! NO PAIN!!! Well wishes! I'm glad your PICC line placement was easier than mine. Get well soon.
Its crazy everybody is having port issues smh. Janiece had problems yesterday and mary from the frey life has been having issues for a while
Channing Brady what a wild coincidence, eh?
What happened to Jaquie? I hope everything is okay :/
I wish I could give you a hug . You are so strong and smart and kudos to you for hanging in there in a poopy hospital I dont think I could manage If I were in your position but Im happy to hear your doctors and nurses are working hard to help you !
I don’t know why, but I laughed so hard when you said, “the salad is fighting him!” 😂😂
I have foundrjat on my port its easier to have the needle's tubing facing across my chest, instead of straight down. Also I use a secure sticky (idk why I cannot remember the name right now lol) you pull the line into it and there is a velcro tag that helps a ton in it not pulling up the dressing. Ill try to remember to post you the item number
Hey my love I watch your vlogs all the time, I can honestly say I have gone right back to the bigining and watched every single vlog at least twice as your so positive with all the issues you have your a real fighter and iv never seen anyone fight as much as you!!! I just wanted to say soooo when you gonna be sponsored by the game trouble? Iv never heard of it before seeing your vlogs and I realy wanna try it so I'm gonna see if we have it in England and buy it and every time i play it I'll think of you dude!!! Take care my angel loads of love vic from the (Two-veez )youtubechannel xxxx
Did you stop cbd oil?? Was looking for an update.good luck with everything!
You are so brave! I just think you are wonderful and appreciate your vlogs. I hope it doesn’t creep you out when people says they think of you often but you are a constant positive in my life and a role model of how to keep moving forward with my chronic illness, so I do wonder how you are doing and pray for you when I think of you. 🤗 hello to Harlow
I had a Picc line when I had my IV antibiotics. It wasn't bad. Had to have IV antibiotics for six weeks. Sending agentle 🤗 to you.
Jacquie, you are an inspiration to me. Your faith is inspiring !!! I pray that you find comfort, peace, and strength in what God has in store for you next! I love your family and you are so blessed to have such a strong familial support system!! ❤️❤️
I know life is crazy in the hospital and you’re busy getting better but just wanted you to know that our family is thinking of you. Even when you take time off from vlogging we continue to pray for your lovely little family. May God bless you and keep you in his loving arms in this hard time. Hugs from the Martinez family. ☺️
You’re lucky that with your mast cell you don’t react to Tegaderm and all of those adhesives. Most people with MC can’t use anything except IV3000 which is frustrating because hospitals don’t carry them.
I don't see where you posted about the Tegaderm from? Did I miss it? It would be perfect for me! How was it like getting potassium through your IV? For me it sometimes burns? I know I'm late for this vlog but if you have to get another one ask for ice pack if they burn too bad or ask if they can refrigerate them first! Just a suggestion
what is the song at 5:30 ???
I hope you're doing well Jaquie! Wishing you some strength
PICC Lines are great, I've had two for TPN..
I've had a permanent feeding tube in my jejunum, for almost four years now. Good luck, hope you are feeling better soon!
I hope you are well enough to get out soon. Bless your heart!!!
My picc line was a god send so I didn’t have to have so many pokes. My picc bled a little so we had to change the dressing in the hospital. You can’t feel anything when they pull it either and the scar is small.
Where did you get your blanket? I saw Mary from The Frey Life has one too. I want one!
Does dysautonomia also cause high blood pressure? I haven't been diagnosed with it, but, I have been having trouble with regulating my blood pressure. Sometimes, my systolic readings are as low as 90, and sometimes they are as high as 150. Average for me is 110.
Praying for you Jacquie...hoping all is going well. Interesting vid. And stay strong. 👍🏼
Jessie
When were you diagnosed with gastroparesis? I was just diagnosed in September of 2017. Hugs.
I hope your feeling better now that your getting some better nutrition. I pray your infection clears up fast and look forward to watching your vlogs again when you are feeling better. Keep moving forward. ☺
I have a hard time whenever I have to have a line put in my arm, for I am allergic to adhesive and those white and clear ones where they are placed starts turning red underneath and start itching. So we have to use paper tape on me. And as you know paper tape does not hold up well. So I am always having to keep pressing it down to hold the line in. I do not have chronic illness like you do but I have some issues. But only need lines when am in the hospital.
I have had a PICC line for about 6 months now. I use it for TPN as well. I am in the process of getting my dog trained as Service Dog by Medical Mutts, the funding process is going kind of slow I have a GoFundMe page set up....
Hey I want to help with English subtitles how do I do that?
Haven't heard from you in a while and I am getting worried, is everything ok?
You are very brave! I hope you have a speedy recovery!
My friend was in the hospital she just got home today she was there for three weeks and she had a picc line put it she told me it’s sucked we have the same birth defect called spina bifida so she had to have one put in because of complications
Ports can be finicky....and annoying. I had the same thing.
PICC Lines aren't that bad to have inserted. ( I've had 2 of them) The only thing I felt was the first "stick"...you do feel that, but it's minimal, honest.
Actually I had ( both of my PICC lines) the PiCC lines placed without any medications, etc. They did offer versed, but I didn't really need it.
I was put under a local when I had the first Port and because it was my first port and had never had a port inserted, I hardly remember the Dr. doing the surgery, I actually didn't remember much about the 2nd port placement as well.
Jaquie you're doing a great job with everything you're going through. My last Port I've had for 6 yrs !
Judd is such and awesome husband! #BestHubbyJudd
I started out with a picc and my placement looked like a murder scene lol i bleed a lot. I am on tpn indefinitely due to gp and intestinal dysmotility. Did you get really hot while sleeping when tpn was introduced? I had horrible hot flashes when i started in the hospital. Hope it helps but isn't permanent.
I had a picc when I was on life support. I've only had one, but it itches!
Kimberly Hayes do you vlog too? I’d like to hear more about your experience. Btw I’m glad life support worked and you are still here! 🤗
Kimberly Hayes Hi ive got picc line and i no what ye mean about itching, but its just so much better than having veins disrupted day in day out
I don’t see the tegaderm piece in the description - I definitely am interested because my port’s dressing always peels!
I just looked, it is definitely there.
It's not there for me either
Oh it's under the Patreon thing! Had to scan the description for 3 minutes hahahaha
Thank you, Vivian, for the helpful response! I was looking in the “like what you see?” part lol
Brooke Maxwell me too at first! Haha, didn't expect it there. Glad to be of help
No post since that vlog? I guess that's not a good sign, right? Still hoping you're doing better already....
stay strong Jacquie we all look up to you!!
Really hope that this helps you to get through your infection recovery ❤️
Hope that you can be home soon and infection is controlled.
I didnt see the dressing link can I get it please?
Loved the new music!!! Very brave getting pik line alone!!! Go girl!!!
I had a PICC line when I was 14after I had orbital cellutis that almost took my life and I was put to sleep to get it. It was a children’s hospital tho so maybe that’s why.
I love my picc line , my mast cell caused so much blisters
I finally got my dressing way different I can’t hang with it tangling
I am scared of a port but love my picc take care doll
That may be an extremely stupid question, but how can you put multiple bags on just one PICC access? Do they get mixed somewhere so that they can all go into the same tube? ;)
Amy Gn I think they would just run the antibiotic then when it was finished then run her fluids or potassium or whatever is needed so they don’t mix because that can cause reactions. If it’s something like a small dose of Benadryl that won’t take a long time to run they probably pause whatever is running, push saline through the line to clean it out so it doesn’t mix, do the Benadryl, more saline, then hook back up to whatever was running.
They usually have 2 lumens so you can connect multiple
Not stupid at all! Two lumens is essentially like having 2 ivs coming out of one hole in the skin. Each lumen is in a separate place inside so that the contents of each iv are not immediately mixing together at the end of the plastic tubes inside. Many drugs have a direct chemical reaction with TPN and mixing the 2 directly, causes what they call precipitate(ie. tiny chunks). As you can imagine, chunks of anything are not good to have in your blood. This can be prevented by majorly diluting the drug. Doing this, means you would have to use an iv pump and spend 30+ minutes infusing a medication you could push in with a syringe over a minute. You avoid this they use a 2 lumen line, by having the TPN and medication come out a separate places(2 lumens). When you do that, your blood dilutes the medication so you don't get precipitate chunks in your blood.
Havent heard from you in a few days. Hope you are ok.
Hey Jaquie,
Thinking about you! I hope your okay and recovering well.
Mallory
I have a Grand Daughter that has Ellie the elephant too. She takes her everywhere. Get well soon. Sending prayers your way.
Im so sorry you are going through this
I love u, we all do. You are in our prayers.
I didnt feel the pic line going in.
So glad the PICC line is working!!...also when I heard your getting straight potassium. ..OH BOY does that hurt with a straight IV...burns the whole way up till you get to a large vein...but with the PICC..you should be able to avoid that since it is going to a large vein..if you have the burning sensation..ice helps..ALOT!!...praying for you!
I had a picc line placed in my neck for around three week bc I was receiving dialysis and it was so annoying feeling the two little tubes bounce with my pulse against my neck 😣😐
Wow! I could not even imagine one in my neck.. You are BRAVE!
that's crazy that they have you on TPN but they're letting Judd bring you Olive Garden. I thought TPN was a last option for people who can't eat orally?? Why don't you just drink the Kate Farms shakes like you've mentioned before?
I really wish it were that simple. If I could just drink enough Kate Farms oral shakes, I wouldn’t need tube feeds or any other form of supplemental nutrition to begin with. I believe you are recalling the various times my previous feeding tubes would kink, and I would have to manage a few days without my feeds until it was replaced. For that, sipping on Kate Farms for 2-3 days is feasible. But with this hospital stay I am going on two weeks of not being able to run feeds well. I’ve already lost some weight and back tracked. I’m doing as much oral intake as I can, but it isn’t enough. Just because someone requires supplemental nutrition does not automatically mean they are NPO. My doctors encourage me to eat. So yes, I had soup. But a few spoonfuls does not constitute nearly enough of what I need. If I cannot eat/drink enough and I cannot run tube feeds, the next option is short term TPN to get me through this abrasive treatment. Once the infection has cleared and the IV antibiotics are complete, the PICC should be pulled and I will be back on my feeds. My doctors (which includes a dietician) are working in my best interest.
TPN is not a complete long term replacement if any oral intake is possible. Oral intake is almost always better for the patient, it keeps the stomach and intestines working.
She cannot sustain herself on oral intake (1st line of defense), now her feeding tube (2nd line of defense) isn't working, so they are to TPN (line of defense 3) until the feeding tube works again. Also remember that with her gastroperesis and no g tube, she can have vomiting spells, so those few spoonfuls she can eat may be thrown up later.
If she could "just drink the kate farm shakes", she wouldn't have a feeding tube either.
I'll try not to repeat too much of what's already been said here. In order to heal and overcome this infection, Jaquie needs LOTS of protein and with her other issues, she is unable to get the amount she needs by other means right now. J-tube infections are hard to clear because the bacteria in your intestines(ie, poo) leak outside of the intestines onto the skin. Tpn is the best way for Jaquie to get the nourishment needed to beat this. Most people on tpn are strongly encouraged to eat what they can while on tpn. Tpn is very hard on your body and over time causes liver failure in many people. They have found that eating is the best way to ward off liver failure even if you are unable to utilize or absorb calories or nutrients from the food you eat.
I hope you get well soon 😊
I also have a question (or a few questions..) about your hospital rooms...😅 I'm just genuinely curious, because it's different here.. do you always have a room for yourself? Is is a private Hospital or is it because you have a service dog? - please keep in mind that all I have to compare it to is my local hospital here in Norway, where I have never experienced that anyone I know or myself have had a private room...😅
I am sure there are differences between the hospitals here and the hospitals in Norway, but I have a private room because I am on isolation. This is due to my history of MRSA and also because of my CVID. Basically it keeps myself and others safe (:
I think there has been vlogs about a previous hospital stay where Jaquie has been in a shared room. But here in Germany there’s also very rarely private rooms, if ever. And you mostly have to pay for it yourself if you want one (and also for WiFi, you have to pay for that too, if it’s offered at all)
Chronically Jaquie okay 😊 yeah, here you get a private room too if you have MRSA 😅 honestly didn't think about that 😅
DeDe6548 really? You have to pay for wifi at the hospital?😯 here it's free😂 it's not good wifi... but it's free😂
AlienMissy 483 here in my local hospital in the uk there is free Wifi in emergency but once I went to a ward no Wifi at all. Some very limited internet services were available on the televisions that you had to pay per day to use. In the second ward I was moved to there wasn’t even cellphone reception so I felt very cut off and alone. Also I have noticed visiting seems much more open in the US. Here, unless you are a child there are set hours (usually part of the afternoon) when family or friends can come to visit. I have never heard of family being able to stay all day or nights like I have seen in some videos from people in America!
can we have the link to the tegaderm please?
I provided it you just have to look in the description
Thanks. When I watched the first time (within a few minutes of upload) it definitely wasn't on there, having come back to it again it seems to have appeared! All good.
Only a few more days left in there hopefully! You got this jaq ❤️💪
Hey Jac...just letting ya know your so loved and on my mind and prayers always. Hang in there! Glad you have the banana bag and pic going, food is on its way :) Your color looks better today. xo
P.S. I'm jelly, I didn't get anything to help calm me down when I got my pic. But it went fine and smoothly..I was afraid too, but was fine. :)
Jaquie, did the Doctors explain to you the reason why your potassium went low? I am praying for you. You are staying very courageous and positive, considering how long you have been in the hospital, and also facing more days there. I am so sorry.
Have you ever wondered why hospitals serve apple juice and orange juice in those little cups with the foil you peel off? You’re almost guaranteed to spill it. Why doesn’t it come in bottles? Just another one of the strange things about hospital stays. I hope you are keeping your spirits up and managing to find humor where you can, Jacquie.
BergletteMom I always get a straw and stick it through the foil like a juice box instead of peeling it off.
Big hugs beautiful ❤ Onwards & upwards now with TPN I hope :-) xxxx
Lord a PICC line... This is too real here. I’m surprised they didn’t sedate you and I had to go to the PICU every time I’ve had one. Be prepared for frequent changes and good luck. ❤️
Claire Elizabeth I have had 3 PICC lines placed, I was awake for all three and went home after the procedure. It was so easy. I now have a power port and was awake for that also. It was great and went home right after they were done with no meds for any of the procedures. I have an incredible Doctor!!! I was on TPN for months, hated it. Now have a J-tube for feeds, out patient too. All is good, no more TPN, just meds and tube feeds. Headed in the right direction.
I got my picc line out for the same spot and I didn’t even feel it
We call it frustration in the uk! I used to play a lot when I was younger but like yourself I'm such a sore loser lol hope ur feeling better soon. X