As someone who’s had sepsis twice, I thank you for sharing this. You’ve hit the nail on the head...it’s important to be your own advocate and watch how others are handling your port
@IsabelleJane
6 жыл бұрын
I want to thank you for posting this. Because I have gone through Port struggles for so long now people have even suggested removing it but I rely on it so much so why would I want to do that so you posting this video makes me feel that I’m not alone having these sort of issues so thank you so much. One thing that I do I think that people don’t realize is that only we ourselves know where body really well me know when somethings not right finally someone is starting to actually listen to me with this whole port nonsense it is an inconvenience it is very frustrating but I’m hoping things will get better. I hope you feel better.
@godlovesallpeople481
6 жыл бұрын
I have GP and I wanted to thank you. Your videos like this have helped me so much. I keep you in my thoughts and prayers.
@echoesofthepast2577
6 жыл бұрын
I was so worried for you when you mentioned that you couldn’t access your port Jaquie since it is your lifeline but I felt such a relief when you then said that you were finally able to access it and that it was working. Praise be to God that everything went well with your port. He’s looking out for you and he’s looking after you including your beautiful family, never doubt that. He’s always with you watching over you and only wanting the best for you. Please give darling Harlow a kiss and a cuddle for me. She’s such an amazing and wonderful dog. Wishing you and your family happiness always, something to smile and laugh about on every day and God’s most abundant blessings. I hope and pray that this was the last time you’ve had problems with your port and that from now on it’ll never give you problems again.🌸💗💕💜🌸💗💕💜🌸💗💕💜🌸🐾🐾
@hollyosgerby1901
6 жыл бұрын
Prayers that your port will behave. You don't need the added stress or worry that a malfunctioning port puts on you. God bless! 🙏🏻❤️
@cherylreilly5244
6 жыл бұрын
Jaquie you can get through this I know it. Prayers for peace and healing. 😊
@theresaflowers
6 жыл бұрын
Good morning Jaquie 😍😍. I am happy for you that you were able to access your port. You are such a great advocate for yourself. Have a wonderful day.
@rebekahbridges-tervydis5054
6 жыл бұрын
I know nothing about ports. But, I do know shoulders and the place where your port is located is the same space I have problems due to RA and my sleeping position. Let me explain. I sleep on my right side. You have your port on the right side. My body mass and gravity pull my left side down, scrunching my right side. Perhaps because of eds your port is slipping/inverting a bit because of your sleep position?
@lucilletenhove3116
6 жыл бұрын
Hi jaquie i had my first port for 14 months had to come out within a half hour and then had Hickman lines central lines every where and since 2010 I have my port which sometimes we can’t access it and lots of skin irritations and I have had 3 picc lines so now I use my picc line and port and was looking at your needle maybe it’s to long I live in the Netherlands but my needle is from the USA maybe you need a shorter needle that was my problem they even wanted to remove it at 10 days old I use a gripper and that made such a difference mine was touching the bottom the needle is from deltec ref number is21-2717-24 size 0,9 (20gx25 mm)1 inch and I put a bio patch under the foam on the gripper and cavillion swabs to protect the skin and use a antibacterial heparin called taurolock to keep my port and clean and open and the plaster is called tegaderm CHG from 3 m which is a gel of chlorhexdine has 2% chi in it red number 1656R also made in the USA its helped me I have pains around it and the doctor say it’s from the nerves around it and mine is loose and flips sometimes cause the muscle are cut into and its from wear and tear the gripper needle has helped me keep mine so long glad you could access your port I let my nurses do the port weekly but the rest I do good luck love the new merchandise will be ordering soon
@samiamisme
6 жыл бұрын
I had no idea they could flip! I don't have one, but my mom had a Hickman, then a port. We had a nurse access/deaccess it but I was in charge of dressing changes and cleaning etc. I'm glad I didn't know they could flip, especially with mom and I having EDS. Great info.
@mandyschaan8776
6 жыл бұрын
I have eds and my port is really slidey under my skin and so we have to have one person stabilize it when accesing it and the other access it and still stabilize because mine moves so much because of my EDS, maybe you can figure out a way to do that and then you won't have to poke yourself multiple time. I rememebr when I had to poke myself 3-4 times per access and it was not fun.
@joansmith9431
6 жыл бұрын
Glad you were able to get it done the second time. Good job done. Keep Moving Forward.
@jennacatherine2524
6 жыл бұрын
if you have to get a different port placed anytime soon , see if they can stitch your port into place . that's what my surgeon did and I haven't had any issues regarding my port flipping or sliding .
@ercwolfman9941
6 жыл бұрын
Hi Jaquie, I'm glad you were albe to get it done! I hope and pray and send you all the positive energy your way that your port will stop moving. Be strong and keep moving forward. From your amigo in AZ.
@danettehartsock6366
6 жыл бұрын
Love the HIPPO SHIRT!!! Can we say ADORABLE! Glad you got your port care done successfully. Love you all.
@BeetleBoo2
6 жыл бұрын
I was wondering if you have any tips for sleeping with pain. I’ve had hip pain as long as I can remember and while it was uncomfortable it was tolerable. But recently my hip pain has gotten worse and now I have pain in all of my joints. I have to rest a lot to feel better, but it is super difficult to fall asleep with the discomfort no matter how much pain meds I take or pillows I use. I’m still trying to get answers about my pain from doctors but if you have any tips to share that would be super awesome!
@sguishy89
6 жыл бұрын
You can always tell how things are going by your eyes. I hope for more adventures and good days ahead very very soon!
@yogabirds
6 жыл бұрын
Hugs to you! I know how you feel and anymore, I just burst into tears with malfunctions as it's the only way for me to get fluids, nutrients, and meds. I had a port for 8yrs as a child and never had a bit of trouble until a nurse refused to allow me to care for it at a hospital I don't usually go to. I ended up with mrsa and resistant yeast and I made them take it out. That was about 18 yrs ago. I agree the wait and see approach is best for now. Something I recommend you talk to your doctor about in the future is possibly getting a tunneled catheter such as a broviac, groshong, or Hickman when your port no longer works and has to be replaced. Ports are great if you need dependable iv access for a while or a specific treatment like a round of antibiotics. It allows you to take the needle out when not in use which is great. At this point, you are missing the point daily and pretty much do you have access to all of the time. And as you know, when something major is wrong with that they're going to have to do surgery to fix it. Because they don't need to make an incision with tunneled catheters, having them placed feels about the same a a pic line and is nowhere near as painful as getting a port put in. Initially, you will have to have surgery to have a line placed, but after that most issues can be fixed with interventional radiology and are 98% painless. Even if the line were to break, they can just put a guide wire in the old line, pull the old one out, and slip a new one over the guide wire. There is a little uncomfortable tugging, but it is not painful. If you get to the point you don't need iv access, removing it is easy. The doctor gives a quick fast yank and then holds a pressure dressing over the area. I know you don't need it now, but run it by the doctor next time you see her as it's better to have a plan before major trouble with your port occurs. Most doctors seem to have a favorite type of catheter for long-term IV access. And your doctor might be one of those who only likes to use ports and that's OK. But, it certainly doesn't hurt to ask and see what her opinions are on it. I am so glad you were able to get your port accessed this time! Have a great weekend!
@berglettemom6045
6 жыл бұрын
Yay you! I’m glad you were able to access the port.
@elleblu1774
6 жыл бұрын
Mine is always on a tilt angle. I’m used to accessing it now and it’s fine. Hopefully yours finds its new happy place and can stay there and you can get used to it!
@rmatthews2209
6 жыл бұрын
Love the Harlow top!
@aalys5a
6 жыл бұрын
Omg I’m so sorry you have to go through that.
@sarahtennyson7260
6 жыл бұрын
Glad you can still use it , and you’ve got a good medical team! Hang in there!💖🙏🏻
@kayh3692
6 жыл бұрын
I'm sorry you have to go through this, it seems really tough, I hope you feel better soon. 💕
@ryzulucario5774
6 жыл бұрын
I really hope you can solve the problem.
@littofroggy
6 жыл бұрын
Thank you so so much for updating us! Hoping you feel better and everything goes well!
@AllyssaJ7
6 жыл бұрын
I'm so glad your port is okay I got so worried that you were going to need surgery or something to fix it. I'm hoping it stays okay so you wont have to stay in the hospital again
@jonasflynn.7389
6 жыл бұрын
*hugs* I’m praying for you, Jaquie. ❤️❤️
@whiteboi5416
6 жыл бұрын
I’m sorry, but what’s a port?
@brandyhagler3138
6 жыл бұрын
Glad you got your port in Jackie.
@42Finder
6 жыл бұрын
Prayers for you and your family.
@ItsMeKelso
6 жыл бұрын
7:50 I remember you showing how u access ur port when you did the banana bag! It would be nice if you could educate people again like you did in the past!
@carolinesantos1165
6 жыл бұрын
Sending hugs and continued prayers for you and your family 💗
@pammym190
6 жыл бұрын
Yes, port care is very important! You know what ur doing.. I hope it stops being finicky for u!! No Harlow?!😞 Well give her a hug for me!! Ooooh okaaay, & Judd too!!😜😃✌️
@cajsamork6226
6 жыл бұрын
*hugs you*I'll pray for you
@QuaeBellator
6 жыл бұрын
I have two ports right next to each other and one of them is turned also. It flipped because I would constantly lose and gain weight which caused it to move out of place
@robinharris0562
6 жыл бұрын
So sorry. I wish there was a sad button to push
@penelopepolinsneemeyer4757
6 жыл бұрын
Great job Jaquie! xxxx
@utoobcandy
6 жыл бұрын
Hope you can get the port problems worked out! How annoying 😐
@DwayneIsKing
6 жыл бұрын
I've had a port for about 6 years now (being that I need it because I'm in the hospital all the time for Sickle Cell anemia and other complications) and it's one of the best things cuz it's better than getting a IV all the time. But boy does it suck when something happens to it. I've had a power port and dual luman ports and these both got infections before and they've had to take it out and it's not fun. So I definitely hope everything gets better 😊
@kellybenson6329
6 жыл бұрын
Stupid port! Really glad you were able to access and get on with your day. 😁🐱👍💕
@btter710
6 жыл бұрын
I totally have been where u are right now with the port! I'm on my second port right now. The amazing surgeon that has put in both of the ports I've had unfortunately retired. If/when this port gives out, I will have to find another surgeon. I'm so sad he retired.
@ChronicallyJaquie
6 жыл бұрын
While it sucks that our medical devices malfunction, it does help to know I'm not alone! Also I can relate to what it is like when a good doctor retires or relocates. So hard!
@natashas6523
6 жыл бұрын
Is hurricane Florence headed your way?
@elisabethduggar4363
6 жыл бұрын
Omg I’m so sorry... just wondering, which dr put in your port. I live in Orlando and need a dr.
@mtbenintendi2534
6 жыл бұрын
Maybe Jed could help you film or the nurse help if you wore and tank?. It could beneficial to those who need the extra bit of confidence that look up ur strong power. Great job of not getting frustrated too. Just and idea on the port access. My daughter had one 5 yrs ago. She is a cancer survivor i am thankful there's videos now all though it would of helped me out more then . Thanks for sharing your story!!!💜🌸
@emmeison3028
6 жыл бұрын
MarknTori Benintendi you can see port access on The Frey Life. (:
@LifesGood22
6 жыл бұрын
Sending all the strength 💪💪💪 that you have helped me find within myself!!! Gentle hugs 🤗🤗🤗and many prayers🙏🙏🙏🙏 💜💜💜
@lindadahlqvist5162
6 жыл бұрын
I have had a line infection, and yes it is not fun.
@KiraPepper
6 жыл бұрын
Its dissapointing when things medically dont go well. And it is really disheartening, but your ability to think about all the pros and cons and keep positive is inspirational. You have such a scientific yet humanitarian outlook on your health and not many people can manage that. As i said you are ab inspiration and help me look on the bright side of things.
@susanlevine779
6 жыл бұрын
Ugh!! This video started on a negative note. I'm glad it worked out in the end. You definitely know what you're doing and certainly an excellent advocate for yourself.
@meganlovesdisneyandcrafts4780
6 жыл бұрын
☹️ So glad it ended up working. I understand about implanted medical devices malfunctioning, I have shunts in my head to clear fluid. When they malfunction (get clogged) i can get super sick or when i bump one it's super painful.
@wakeupandjess2148
6 жыл бұрын
:hugs: I hope it all goes well from here
@btter710
6 жыл бұрын
I haven't accessed my own port yet, but I've been told that if I need weeks of antibiotics again (I'm prone to osteomyelitis) that I can do it at home myself, they just need to train me.
@ChronicallyJaquie
6 жыл бұрын
Yes my first home health nurse trained me and cleared me to do it myself. My medical team agreed this was the best and most practical option for me. Everyone is different though and that's okay! Hopefully you can stay infection free. 🤞
@kimberlyhayes6006
6 жыл бұрын
Mine is doing the same thing! My power port that is, I just got my other port fixed now I think this one is flipping coz it's hard to access.
@alyssawssinging4039
6 жыл бұрын
Hey jaquie good morning
@amyw6601
6 жыл бұрын
I love you and your family Jaquie. I hope I can meet you one day...i live about 40 mins from you and suffer from MCAS, dysautonomia, and just had surgery to correct MALS last year. God Bless you!
@hannahmariellewellynllewel7128
6 жыл бұрын
Juqie I kown your avoiding giving fixed but relley u get fixed where works for u juqie sence last blog about this juqie 😉😊👧🙋🏡🎥 love shirt 🐶
@mirandayoung2860
6 жыл бұрын
9/5/18 was my birthday I’m 22
@jan9659
6 жыл бұрын
Oh, Jaquie, how I wish I could give you wellness. I'm glad you could access the port. What a pain in the butt. Love and hugs to you.
@ChronicallyJaquie
6 жыл бұрын
Yes a total pain in the butt... Or pain in the chest. Get it? 😅
@liamodonovan3437
6 жыл бұрын
So sorry Jacquie that things are malfunctioning I hope you will get there eventually love Jacquie you are such a strong person i hope manage to stay at home without having to go to the hospital
@UniquelyZebras
6 жыл бұрын
Sorry about what you are going thru with your port. EDS can be such a pain at times.
@PhoenixXFeatherz
6 жыл бұрын
Argh. I have a port too and depending on if the nurse gets the needle in the right place blood draws can be a real pain!!
@VulcanOnWheels
6 жыл бұрын
1:22 Avoid, perhaps? I'm not a native speaker of your language, but I don't think that overlooking and ignoring are the same thing. 7:36 That must be such a relief! :-) I'm glad to hear that your last access attempt worked and I hope your port will turn back.
@angiemarquez06
6 жыл бұрын
Hi
@rrrusttie
6 жыл бұрын
Prayers & hugs. This in no way is telling you to stop using your Dr or your treatment everybody is where they are and has to feel comfortable. Faith cometh by hearing and hearing by the word of God. A big part of Jesus Ministry was laying hands on the sick they recovered and wanting them well. I am sure you know all this already Besides dying on the cross for our salvation Jesus also bore all our sickness and pain " by his stripes we were healed" A young lady from charis bible healing school saw 2 miracles of herself and daughter. She was healed of epilepsy by God 13 pills a day uncurable.. when she heard God speak to her heart and said what if you didn't have to spend all your time around your illness and she pushed forward and it was confirmed to her in a Bible study she said if somebody asked to pray for me I know this is you speaking to me God for to be healed and someone did pray for her without her even asking and she felt within herself she was healed in two weeks. Some people it takes longer. Her daughter was also from birth throwing up the final diagnosis was autoimmune disorder that she was allergic to all foods so they put a feeding tube in her stomach and it was failing. She was a size of a nine month old and she was 3 years old. They got a hold of a old Andrew Wommack tape and listen to it on the way to the prayer meeting that he was in the UK the next week. As her hopes were dashed as it came as the last day of the prayer finally another lady he was healed completely of asthma and her daughter by God saw that this little child was laying on the floor in the Overflow room and look like a little robot doll and she took them her and her husband and Hanna..the speaker Andrew Wommack he prayed over Hanna and she was healed they went to Kentucky Fried Chicken and she could eat anything that was a instantaneous miracle. Faith cometh by hearing and hearing by the word of God everybody is in their own place and I understand completely cuz I use doctors myself. This is not any condemnation for what you have been through. Here is a link to have you listen to some real healing testimonies how some real life-threatening illnesses I hope it blesses you. Healing Testimonies Archives - Andrew Wommack Ministries www.awmi.net/video/healing/ Hanna story is on here.
@rrrusttie
6 жыл бұрын
Oh I found her testimony on Hanna's Mom. You are such a sweet tenacious smart young lady that I know that you are very special and God loves you and created you! Here is the short video of Carlie Hannah's Mom's healing journey. Much love..keep up the good fight of faith. kzitem.info/news/bejne/oqpv24KJn5OTg2k
@jpjpvds
6 жыл бұрын
Grrrr..... Yesterday it was behaving so well, giving up gallons and gallons of blood and today this........ If this was funny Ild call that port a lemon!! But seriously, is putting in a new or second port a big procedure??
@ChronicallyJaquie
6 жыл бұрын
It's another surgery and with my healing issues with EDS and my current MRSA problems we don't want that. It's thankfully working well enough to keep! Praying it stays that way. 🙏
@jpjpvds
6 жыл бұрын
@@ChronicallyJaquie Ah yes, should've thought about that. Even small procedures are big with EDS....... I keep getting surprised by how your conditions keep interacting and making life difficult..... 🙏 With You
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