Living With a PICC Line
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- Опубліковано 10 лют 2025
- I have a PICC line now, so I'm sharing what it's like to live with one, my personal experiences, and some tips for making it work while taking care of children. Nothing in this video is to be taken as medical advice or used in place of medical advice, and PLEASE, always consult with your physician! :)
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#ehlersdanlossyndrome #PICCline #POTS
Thank you for sharing!
I just got my PICC line. I have 3 kids, (the youngest is 3 m.o.) I didn't know what to do with my kids trying to not be curious and touching all over but now I feel more confident thank you for making this video.
I'm so glad you found the video helpful! ❤️
That is my main question! I have 2 year old twins and a 7 month old. I'm constantly holding my girl twin and nursing the baby, so I thought a PICC would be impossible. Glad to know it's possible because I really need one!
PS: I also have EDS & POTS
I also have neurofibromatosis, which along with EDS, is the main cause of my chronic pain.
Thank you for sharing 🙏🏻
I'm also a mum of 3 (hEDS & Co) gentle hugs 💞
Thank u for making video
Thank you so much for this video. It helped on so many levels. My husband needs one for an infection and so we ordered the sleeve that you recommended as well. I hope you are doing well. Thank you again for helping us
When you first got the insertion did you have pain a few days later like my arm felt heavy and I could literally feel the picc line in my vein it was uncomfortable how many days did your pain last?
Yes, the pain lasted a few days for me. I have a chest port now, and that one hurt for a few months. Not terribly, just annoying. Soft ice packs really helped.
I regret you restarted wearing a minus lens, after getting to naked eye 20/40.
It was a beautiful effort.
I learned a lot from your efforts.
I currently measure 20/20, from a starting point of 20/50.
Thanks!
I regret it, too. I also regret the horrific genetic condition and multiple chronic illnesses, starvation, malnutrition, and dehydration that have caused my eyesight to deteriorate despite my most diligent efforts. I did not simply choose to continue to wear the minus lens.
@@AngelaHepp -
Thanks, Angie,
Your success to read 20/40, objectively, from -3.5 D was very impressive to me. But I do understand, with major medical problems, your distant vision is the least of your concerns!
Thank you for sharing this! I have abnormal arm anatomy and with the amount of testing I’m about to go through, I have been told to have a picc so that way it’s easy access
Very good. I just got a Hickman but I've had ten piccs
I wish you the best, feel better and stronger 🙏🏻 God bless you
Thank you!
@Angie Hepp, You came across like a beautiful clear day, no fog :-) ps. have ever tried k2-mk7 Cheers M.
Thank you. :) I'm glad to hear it, and glad you enjoyed the video.
Thank you for sharing. Does it ever get hot in that sleeve /do you get concerned about sweat?
Also, does everyone with a picc get a pump and bag or do some people just inject meds into the access tube directly?
I'm due for either a picc or port and trying to choose what's best for me
Hi! Sorry It's been a month since you asked this question. My health is very fragile and I don't come on here often.The sleeve is made from breathable material infused with antibacterial silver. So I never had those issues. It's made specifically for PICC lines.
The line is usually placed to administer fluids or TPN. I now have a chest port (have had it for over 2 years now). I receive IV fluids and TPN through that. I'm 100% fed via my veins. But you can also use it for administering IV medications, but I would say that is a less common use. Most doctors don't like patients administering IV medications at home. I'm a nurse and on palliative care and even I can't get IV nausea or pain meds.
I hope all goes well with your central line placement and that it helps improve your quality of life.
I have leukemia and had to get a port because I need regular infusions. Was that an option for you? It was recommended for me based on my treatment. There is a little pain when it is accessed but not too bad. Sometimes it wakes me up in the night when I roll onto it, but otherwise doesn't get in the way. Glad your PICC line is working for you and not too inconvenient or painful.
Yes, my doctors have talked about a port, but wanted to start with the less invasive option first. If it looks like I will need fluids long term, they will do a port.
You are amazing
Thanks for sharing. How long have you had your line in?
I think I had it for about 6-8 weeks. I no longer have one, since I had successful MALS surgery in December! 😊
@@AngelaHepp That's great! 6-8 seems so trivial to me. I've had multiple piccs and mids. My most recent one was in for 7 months and finally had it pulled because of a superficial clot as a precaution.
Hi Angie😊
I see you wear glasses now again, does the endmyopia practices really reduce you eye length?
Yes, it does really work. I improved my vision dramatically until my genetic illness and comorbidities began to really progress and sadly, the dehydration and malnutrition caused my vision to rapidly decline. All my progress updates are in my Natural Vision Improvement playlist.
They’ve been putting peripheral lines in my neck, because don’t have anything left on my legs. Obviously they used up my arms. Love PiCC lines, but due to my mrsa, they get infected 60% of the time. Had ulcerative colitis as a kid and have Crohn’s now, as well as a lot of other health issues. Recently passed my 140th hospital admission, since I was 10 25 yeas ago. They put a picc line in me 4 months ago, for just 3 days, so I could get CT scan and a stelalra. Infusion. I’ve had ports as well and honestly wouldn’t mind a new one, even though my last two got infected. My last picc line I went home from the hospital with, was May 2019 to do antibiotics at home. Btw, that picc line got infected . I also have done TPN and lipids at home and obviously at the hospital.
Wow, you have been through a lot. Stay strong! 💪❤️
I have the same issue with lines getting infected every single picc I had got infected and huuurt! Red swollen arm ect. Every time. I now how Hickman so far so good but took long time to settle and my body accept it
Wonderful videos, and so very inspiring. Thank you so much for doing these. I'm sure your impact is beyond what you could imagine.
I haphazardly came to your videos for eyesight improvement but now I'm very curious about your EDS and your other syndromes that you've had to live with. If I may ask, do these syndromes improve with time or on their own? And are they treatable? Or are they requiting daily management from here on?
Are there cures on the way? Maybe I could also go research this on Wiki but coming from you it would perhaps be a lot more in-depth without all of the technical jargon. Don't feel obliged to respond, if it's too much at this point I will totally understand. Best wishes to your family.
Hello, and thank you for watching! I'm glad you enjoyed the video. Unfortunately, these conditions do not improve with time, but rather they usually progress. There is no cure for any of them, only managing symptoms, which is largely unsuccessful. There are surgical corrections that can be made, but the doctors who are familiar with these conditions are rare and require traveling, which is difficult with a family and even more difficult when you are very ill. We've been traveling to see multiple doctors to try to find out if a surgery may be helpful. But right now we're trying to get me to gain weight and make sense of all the odd and unusual test results that are baffling the doctors.
I had one for MRSA. I woke up before they fully finished. So painful.
I was awake the entire time for mine. Just local anesthetic. 😳😱
@@AngelaHepp oh. Different doctors, different approaches.
Hello Angie Hepp Can you able to go swimming when you have it?
No, unfortunately you can't bathe or swim with a PICC line. You can shower if you use a waterproof cover.
@@AngelaHepp ok thanks
I know this vid was a year ago so I might not even get an answer but are you able to sleep on the same side as your picc line?
Yep! After the initial soreness went away, I could sleep on that side. The only issue was that sometimes that caused the tip of the catheter to rest a little closer to my heart and it triggered palpitations. They stopped as soon as I changed position.
Hi Angie! Occupational Therapy students in training here! We would love to know how bathing and dressing go with your picc line- any troubles or recommendations you have for someone just learning to live with a picc line? Thanks!
-James Madison University OT student team
The PICC line cover I show in the video makes dressing extremely easy, as it completely covers the line so there's no chance of it catching on clothing and pulling. You would need to disconnect from your infusion first, though. Bathing is not advised with a PICC line, but you can shower with a waterproof cover, like a cast cover.
have heard of CBD oil and the Endocannabinol (CB1 & CB2) system?
Yes. I've used CBD for months. I have other videos about it on my channel. Well, just one, actually, since UA-cam deleted the other one where I talked about using CBD oil for my chronic pain.
Angie Hepp that’s great!
It looks a lot like having an IV in your upper arm. I'm never very comfortable with IV's I am always afraid that I am going to accidentally bump it the wrong way and cause it to come out. I wish you all the best with your health issues.
The only similarity to a peripheral IV is that it goes into a vein. A PICC is a type of central line: a semi-permanent tube that is over a foot long and ends just above my heart. Thankfully there is a device called a StatLock that holds the line firmly in place so it would require quite a yank to pull it out. As I demonstrated in the video, I also keep it covered securely so there's no tubing exposed (unless I'm infusing). The tube is much thicker and much, much longer than a peripheral IV, and it can remain in place for months, as opposed to a peripheral IV, which can only stay in for a few days.
Brain fog with pots is soooo real! I struggle bad with it. 😭
Yep. It's the worst. :(
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