Accessing Port

[ekarayannis1]

to access the port once a week, or every day (once in the morning and de-access at night) im not sure what to do and am kinda lost, but it looks like I would be accessing my port myself, rather than having someone do it for me.

[ekarayannis1]

issue is a lot of my veins will not support another picc line) or a port in my chest. I am used to the picc line and very familiar with it. but the port is very new and scary to me. I am also away at school and used to my parents being close by for help/looking over me, but that is not the case with me being 6 hours away at college. If you would provide me with some more information perhapse pros and cons of picc line vs port. Also I would be receiving antibiotics twice a day, would it be better

[ekarayannis1]

hii,

firstly, thank you for sharing this video and all this information. I am 20 years old and have been diagnosed with lyme disease since i was 11 years old. I have had numerous picc lines in the past, but my last treatment (receiving iv rocephin) i began to create kidney stones, and had to stop my treatment. Since then I have been on oral antibiotics but they aren't helping. I have been discussing options with my doctors and have come down to another picc line with different antibiotics (the

[alittleinbetween]

This is inspiring. I was recently re-diagnosed with leukaemia and because of the chemotherapy plan I needed a double lumen port. I have had one removed due to a line infection. But my second one is in the same place as yours but on the left due to the right already been used. The doctors and nurses have suggested that they can teach me or my dad to access my own port. I was just wondering what it is like to do it yourself. Is it scary hard etc.... This video has really given me hope... Thank yo

[FlyinHyy]

thank you SO MUCH for sharing, plan on accessing my own port soon, cool to see someobdy accessing their own chest port seems like you're able to see and access it esaily enough which i s my main concern

[SellyNue]

I just love the music on this video!! 

[penguini1982]

@SellyNue - And at first I was a little nervous about missing things but I was supervised by a nurse the first 2 or 3 times I did it myself and since then it's just become a simple thing that I don't have to think too much about. I do have to make sure I have everything all set before I start and there have been times when my Lyme brain has kicked in and made me forget something so someone else has had to bring it to me and put it not be sterile field. But generally it has become just another t

[XxxXJessXxxXilysm]

@penguini1982 i have a port two and im only 12 i got a liver transplant what happened to you?

[penguini1982]

@SellyNue - oops, posted before I had really written anything! I would recommend a port over a picc line in some situations but it depends on a few things. 1) How long your treatment is expected to last. 2) If you will be doing the IV antibiotic everyday or pulsing with sone days off. 3) if you do anything that would require you to need more use of your arms and to be able to lift things. I will send you a message with more detail but those are the three biggest things to consider in m opinion,

[penguini1982]

@SellyNue - I wou

[SellyNue]

Wow!! Man, you did that like a PRO! I would be scared that I wouldn't remember all the steps in the right order, etc.

So would you recommend a port-a-cath instead of a PICC line if I am given an option? I'm planning on getting one or the other within the next month and I'm not so sure which would be better....

[thegurlygirls]

wow you did a good job i would never do that to mine, mine is really sensitive, i don't touch it or move it when it's in .

[dragonflyice]

Wow! I have been having this done once a month now for about 5 months. For 6 years they were accessing veins, and I was a hard stick and stingy to begin with. I can't imagine doing all of that by myself!

[AmazingGrace160]

I have a tunneled vascular catheter used for plasmapheresis but my Dr. gave me the option of changing it into a port. I would have so much more freedom with a port but when I need pheresis again I would need surgery to have it taken out and get a tunneled vas cat again. I just dk wht to do b/c I don't kno whn the next time I'll have pheresis again.

[MotherWhimsey]

My son said "*gasp* she used NO magic cream?!?!" (he's talking about EMLA). He's terribly impressed if you didn't. lol

[penguini1982]

@MotherWhimsey I believe I used EMLA for this particular accessing and I used to use it most of the time, but now I never use it. I find it easier not to have to plan the hour to have it on and I don't mind the needle stick too much. But tell your son I don't think there's anything wrong with using EMLA. If you don't have to feel the pain from the needle, then you might as well not feel it!

[penguini1982]

The song is "Hope for the Hopeless" by A Fine Frenzy.

[ToxicologyDoc]

What is the name of the song playing in the background?

[ToxicologyDoc]

Your video just made me cry. I'm about the same age as you and am a junior doctor. I also access my port all the time.

The song really captured the emotions I sometimes quietly feel inside when I need to use the port or even when I just feel it in the bath.

I'm so grateful for my port, otherwise I couldn't work in my job or do half the things I do, but it's also a constant reminder of my health and battles that most young people don't face.

[peterpauliepan]

ah one more question? do you get blood work done and how often. i go bi-monthly to a lab so they cannot use my picc, so i end up getting stuck anyway. i am in no way needle phobic but i do get more anxious. it's never bad, i have no feeling i my arms due to nerve damage. if you do get blood drawn, will they use your port if it's accessed?

thanks for making this video. i did a lot of research at the time and thought that was the best choice. hindsight is 20/20 though. would have gotten a port.

[penguini1982]

Theoretically my port is what is used for my blood draws. With my previous port it was always what I used and I drew my own labs with lab-in-a-box kits that I get from my infusion company which is sent off to a lab via FedEx. With my current port, though, I've had trouble with blood return in that it doesn't always give a blood return so sometimes I have to go to my PCP's office and have labs drawn. It's temperamental and sometimes will draw but sometimes won't.

[dragonflyice]

@penguini1982 I see now. I get an IVIG treatment once a month. I have a new kind of port that actually has two catheters dropped in. It is a lot easier than 5-6 sticks trying to get a vein each time.

[penguini1982]

I did a lot of research before I got my first port in 2004 and had gone through a PICC line a few years before so knew what they were all about. I went through a lot of back and forth with it but the final deciding factor was that I was pulsing the antibiotics (and not on any other IVs at that point) so I had 3 days a week off and with a port I could de-access and have more freedom.

It's a hard decision to make and, as you said, hindsight is 20/20.

[peterpauliepan]

if the choice ever comes up again and i really hope it doesn't, i know which way i'll be going. my LLMD lets patients have somebody learn to change their dressing if they cannot get home care so i would imagine that he would be supportive about a port in a similar way. i know one person who i could ask her experience with my particular doctor and a port. she had both as well. thanks for posting this and answering questions.

[peterpauliepan]

i have to have help to take a bath, with the dry pro cover and i use the hot tub a lot less now because the picc cover isn't 1000% reliable. i also have such a hard time in the summer keeping the dressings on for the 7 days, even w/skin prep. i sweat so much because of detox and over heating that they just cannot stick properly. my only real question is do you use emla cream or spray to numb the site up before accessing? i've seen people deacessing themselves and pictures of accessing up close.

[penguini1982]

I use EMLA sometimes. For this particular time I did use EMLA but I can do it pretty easily without. It doesn't hurt too badly - a little worse than a regular needle stick because the needle is a little bit bigger (I use 20 gauge needles but used to use 22 gauge). It's nice to get to go swimming in the summer and take "real" showers and baths and stuff and not worry about getting it wet when it's de-accessed.

[peterpauliepan]

i don't think i'd have any problems doing that myself. i understand everything that you did and why. it's really not much different than a picc line dressing change minus accessing the port. i've seen the ports so i understand the differences between single and double lumens and i could see the advantage to having two for IV abx. i can see that there's a lot more freedom in it and in a lot of ways wished i would have gone that route but thought i'd be done in 6-8 months.