First Time Getting a Port - Looking for Info

[Hail2Pitt]

Hi all,

I am about to re-start long-term IV treatment for Mycobacterium Abscessus, and after having Hickman catheters off and on for the past several years, my doctors want me to get a port. Though I know they're relatively common, I'm a bit apprehensive since I've never had one before.

Can anyone provide me with information on them? My CF clinic gave me a handout that explains them at a high level, but I'm looking for real-life experiences. Here are some questions that I have:

What was the procedure like to get it in? How many days off of work did you have to take? How long did it hurt? Can you work out vigorously (including heavy lifting) with it once everything heals? Were you able to access and de-access it yourself? And, what was it like when it was accessed - can you see it under clothing? Did you change your own dressings, and if so, could it remain accessed when you did that? Also, how long did you have it for - months? Years?

Given that my port will be accessed all the time, I'm not sure I understand why it is better than a catheter. Also, I want to ensure that everything I could do with a catheter I can also do with an accessed port (i.e., run, lift weights, change my dressing after sweating from a workout, etc.).

Thanks so much! Any input you can provide is greatly appreciated!

 

[jaimers]

I've had my port for almost 7 years and love it. Never had a Hickman catheter but regular picc lines became a nightmare for me after years of them so I had to go to a port. I was admitted for pneumonia at the time I had my port put in so i was feeling pretty crappy for a while after so i can't comment on the out of work part (plus i was in college at the time anyway). I would imagine you wouldn't be out of work for more than a couple of days depending on how strenuous your job is. It was painful for a few days and then just kind of sore for a few weeks. I'm a slow healer though so it may just be me that it took that long to feel better. if i hit it accidentally within the following few months it hurt. now i don't feel it at all.
It's located a few inches below my collar bone on the front right side of my chest (above my boob). It shows on me but can only be seen if i'm wearing a lower cut shirt or something like a bathing suit. If they put yours in the same location (probably the most common location i've heard of or seen, though there are other options) you will have a small scar on the base of your neck right above your collar bone area where they go in to secure the catheter part into the vein. This is small and barely shows. I can see the catheter in my neck but it kind of looks like i have a tendon or something there so it doesn't really look weird or noticeable--i know what it is so I see it but no one has ever noticed it unless i point it out.

I workout vigorously and lift weights with it (crossfit) and have never had a problem. I've been more careful when working out while it's accessed but as long as you're careful i don't see why it's a problem and i've never had a doctor tell me not to do an activity while accessed except swim. you may need more frequent dressing changes due to sweating them off (i had this issue). I also change the dressings myself. the needle stays in while you change the dressing. you usually only change the needle once a week (at least at my hospital and when i do home IVs thats the frequency). at first I had a nurse access it but she taught me how to do it myself and now i prefer to do it myself if i can. it requires a monthly flush to ensure it doesn't clot and close off but since you're going to be using it continually for treatment this may not be an issue until after that treatment period is over.

there have been many discussions about ports over the years so if you search the forums you'll definitely come across some more threads with useful/helpful information! I've linked a few that may have some relevant info below but there are definitely more....
http://forum.cysticfibrosis.com/threads/89926-Port-vs-PICC-i-am-listed-for-tx?highlight=port

http://forum.cysticfibrosis.com/threads/72597-When-to-get-a-PORT?highlight=port

http://forum.cysticfibrosis.com/threads/71602-Port?highlight=port

http://forum.cysticfibrosis.com/threads/58112-Port-Surgery-In-2-Weeks-Eek!?highlight=port

 

[windex125]

I have mine in since 2001 the best thing I ever did. Sure I was so upset and crying thinking oh this is the worst now I need a port, in the long run it worked out. My pick lines were not working out past 2 weeks then getting high fevers. I don't remember the pain other than it felt like them shoving a 10lb bag of potatoes into a 5lb slot. so pressure pain, it healed great and I have not had a problem all these years it is also placed in the same spot as hail2pitt which is great I used to worry abt it showing now who cares. I happen to have a double, I call them my buttons. Since being used often yrs ago and now they seem to prude a little more, but again not a big issue. I do have a nurse flush me once a month when not in use. but when it is in use she comes to chg the needle once a week. I don't think I cld do it myself. Good Luck and don't let it scare you. Pat-59/CF

 

[Helenlight]

Our 2.5 year old has a port, she's had it for about 4 months now. While I was apprehensive at first, I think it's the best thing for someone who needs regular I.V.s. She was in theatre for 1 hour, which is much better than the 3-4 hours it took them to try and get a PICC, Hickman or usually eventually a central line (which would fail within a week or two). Her veins of course are small so difficult to access, and we don't want to scar them up so early. The port shows as a bump under her skin just below her collar bone. She went home the same day the procedure was done, and despite saying once or twice that it hurt, she was back at the playground the next day! It doesn't bother her at all.
We had a hospital stay recently for IVs, and the port was a dream compared to what she usually has to go through. We put on a blob of emla cream, and the nurse pops a needle right in to the port, then dressing on top (just one of those window dressings, no bandages or anything). Beats digging around for a vein! There was one needle change halfway through our 2-week stay, and our daughter could do anything she would normally do (except swim, which we wouldn't do during a hospital stay anyway).
She may not need to use it more than once a year, but we're glad she's got it just in case.

 

[randomgirl]

I've had my port for 3 years now and it's much easier than picc lines. I don't remember getting it in but there's anesthesia of course so you won't remember it. I think it hurt only a little bit for a few days but nothing worth pain pills. I've never been strong enough to work out vigorously but I'm pretty sure you can once it's healed. I'm not allowed to access it myself (and neither are many nurses surprisingly) but I can deaccess it myself which is easy. You can definitely tell when it is accessed even under clothing. There will be a big (about 5 inch square) piece of bandage to cover it when accessed so I usually only wear t-shirts where the neckline is higher than most shirts. And then of course you can tell under most clothes because it sticks out some. I can change my own dressings easily and it can stay accessed without being changed while changing the dressing. The one thing that I don't like about it is that it is very noticeable even when it's not accessed because I am thin. So it is VERY hard finding shirts (especially since I'm a girl) that cover the port considering my port is close to the middle of my chest and high up. So a tip would be to get it in a place where it is less noticeable such as closer to the arm pit area rather than near the center of the chest and lower to above the breast rather than closer to the clavicle. Another thing is that you must find good bandages that are usually clear plastic to cover it while showering if it is accessed. And no swimming or bathing/soaking in a tub while it is accessed. This is just my experience though which may be different than most peoples.

 

[Hail2Pitt]

Thanks everyone, this is great information, and it definitely makes me feel less apprehensive!

Jaimers - I'm glad to hear you can do crossfit with it. Though I've never done crossfit, I do like to do P90X, Insanity, etc., and I do a lot of push-ups and pull-ups. I'd hate to have to give that up. When you say you're more careful when it's accessed, what does that mean? Are you just careful not to bump the site? Or, do you cut back and perhaps not lift as much or not do certain exercises? Mine will be accessed indefinitely (I may be looking at a couple years on IVs), so I'll have to deal with it for a long time, and I'm just trying to mentally prepare myself.

And, thanks for posting the other threads!

My appointment is scheduled for Thursday. I'm going to enjoy the heck out of my last few days of freedom!

 

[jaimers]

Hi Hail,
I usually switch out movements like wall ball shots for regular squats and cleans (olympic lifting style cleans) for something else. These are more just for my peace of mind and i think you could still do everything you normally do with the port accessed. You'll know if something feels weird or hurts so you can see what feels ok for you and go from there. never had a problem with the pull ups/push ups so you should be ok on those. good luck!

 

[Hail2Pitt]

So, I got my port on Thursday, and I’m not quite sold on it yet. It seems that the main benefits of a port over a Hickman catheter are when it’s deaccessed, you’re not really limited in what you can do, and you don’t have any tubing hanging out of you.

In my case, I’m expecting to be on IV therapy for perhaps two straight years, and my port will always be accessed. So, though my docs told me I’d like this port more than a Hickman, I’m having trouble seeing why. Here are a few issues I’m having along with questions I’m hoping someone can answer:

1. The needle they’re using sticks out kind of far, and no matter what I wear, I have this obvious lump on my chest. With a Hickman, you couldn’t really see anything under my clothing. So, from a vanity perspective, I’m irritated at how obvious this thing is. I’m thin and muscular, so the needle doesn’t sit flush on my skin, which makes it worse. What size needle do you all use? And do you have any tips for hiding it under your clothing?

2. I was totally self-sufficient with a Hickman, but I’m getting a lot of initial pushback from my home care nurse on this port. There are two main areas:

a. I work out a lot, and sweat a lot when I do. With a Hickman, I would change my dressing after every workout, averaging 4-5 times per week. I’d assumed I could do this exact same thing with an accessed port, but my nurse is acting like that’s going to be very hard. Specifically, she’s acting like it’s too hard to change the dressing without the needle coming out. Can anyone comment on this? How easy or hard is it to change your own dressing with an accessed port?

b. I want to be able to change my own needle, but she’s acting like that will be hard too. She said maybe she can teach my wife to help me, but because the port is placed kind of high on my chest, it will be hard for me to ever do it myself. I’m skeptical that this is true. I know many of you change your own needles. Is it really that big of a deal?

3. I know some folks lift weights with an accessed port – Jaimers, you’re one. When I look at this needle, I’m trying to figure out what would keep it from just popping out. It seems that if I’m benching a lot of weight, doing pull-ups, or even if my kids hit it at the right angle, it could just come out. Does this ever happen, or is it in there more securely than I think?

Thanks all!

 

[windex125]

I think your nurse may be concerned abt the sterile part of you doing this yourself in the beginning the last thing you want to get is a infection. I use 22 3/4 guage needle when accessed and it lays pretty flat covered with a tegaderm plastic patch and the 3-4" tubing hangs out for when you hook up I sometimes tape that down.Yr work outs sound amazing, I did not even know half of the ones you were describing, so maybe I shd not even be commenting, but if you are going to be on IV for at least 2yrs, this has to be yr main concern and you may hv to cut out some of the stuff that may in fact cause some damage. Yr lungs must be in great condition, I have only one functioning lung and the good one is giving me trouble occasionally. My 2 cents here is take it easy for a few mts. get used to it, if you have to cut down in the beg. don't get stressed abt it, because I think with yr determination you will be doing it all within 6mts. just give yourself time to adjust.
Pat-59/CF

 

[LReyome28]

I have had mine since March of 2013 and I made the decision to no longer do volleyball for Special Olympics. When it is accessed in the hospital, I try to get my friends to not hug me so tight, and I need a towel to use my Vest (I still have the older full vest model). The reason why I got mine was I had 11 PICC lines over the years and they were starting to run out of usable left arm to put them in, due to my right arm having a unique high vein split making the preferred vein unusable. I have had the whole list of IV types over the years, from the size 22 (pediatric) peripheral to the PICC lines and an intravenous jugular central line back in July 2012. The day I got mine, I was sore for only about 18 hours and only needed one dose of pain reliever (what helped was they did the procedure during an admission.) They had to replace it in May 2013 after the rehab hospital I was in did not flush it properly, resulting in a kink and clots, and even the new one was less painful then the original.

 

[jshet]

My son had his first one placed in April. Unfortunately the surgeon punctured his lung twice and he needed a chest tube 3 days later. With this behind us, the port has been such a good thing, and my son loves it.
it took some getting use to, and finding new ways to do things, it was a little overwhelming. I think once you get use to it and find ways to make it work for you, you will feel more comfortable with it.
I hope things get better soon, jshet

 

[jaimers]

sorry for the late reply...been on vacation with minimal internet access

My port has a rubber center that i stick the needle into and it holds it in there pretty tight so I think it's extremely unlikely you'll be able to pop it out unintentionally. here is a link with a picture showing the type of port i have and you can see the rubber center: http://powerportadvantage.com/clinicians.html

i have this vague memory of telling the home health nurse i wanted to learn to access it myself and them being fine with that as long as they were there to teach me how to do it the first time. i would ask your clinic for assistance in teaching you how to access it if the home health nurse won't do it.

The tegaderm does go over the needle "handle" and can stick when you're trying to pull it off but I've never had a problem with the needle actually coming out if i just worked the tegaderm off carefully. I've sweated the dressing off before in the hospital when i've been unlucky and gotten one of the terrible plastic mattresses and they changed it without taking the needle out no problem. I'm assuming your home health care nurse probably doesn't see many patients in situations like yours with long term antibiotics. as long as you're using sterile technique I can't see why it would be any different from your hickman dressing changes.

In terms of working out I make adjustments as needed when my port is accessed. sometimes i've done pull ups with no problems (i'm not strng enough to do with without a resistance band to help me so this may be different for you) and sometimes i can feel it pulling and it feels uncomfortable so i will lay off those until i change the needle. for some reason changing the needle helps me. sometimes the skin over the port moves when i'm accessing it so it can feel different from time to time. I would lighten your weight for bench press and see how it feels and work back up if it feels fine.

 

[MichaelL]

Hail2Pitt -- I saw on another discussion that you have grown to like your port. I was wondering if you could answer some questions now that you've had more experience with your port. I've been using PICC lines for the past 4 years, but they've only been lasting about 2 months at a time for the last while. They've been strongly suggesting I switch to a port, but it would be accessed full time for the foreseeable future.

Questions --
1) My home care nurse is concerned that inserting a needle in the same spot every week is going to irritate and break down my skin over time. Have you had any problems with this?
2) I'm worried about showering. I currently use a rubber sleeve that keeps my arm very dry and is relatively quick to take on and off. Before I discovered these sleeves, I used to tape plastic bags to my arm. Over time, the tape would break down my skin and irritate me. I also always had leakage. What do you do to shower?
3) You also had concerns initially that the port stuck out a lot and was very visible through your shirt. Is this still a problem or have you found a solution to it?

Any other thoughts/comments would be also welcome. I am feeling that I have to get a port, but I have my concerns. Thanks!

 

[Hail2Pitt]

Hi Michael - I can definitely answer some port-related questions. To start, I'll say the first month or so was extremely frustrating. I saw three different home care nurses, and they all said that given my use case, the port was the wrong choice - I should have gotten a Hickman. I'd had Hickmans previously and wanted one again this time, but my new clinic talked me into a port, and I was initially pretty ticked off. But, it turned out the nurses were wrong, and my CF clinic was right. I now really like the port.

Here are just some of the things they said that turned out to not be correct - I wouldn't be able to work out with an accessed port (I can), I wouldn't be able to change the dressing on an accessed port (I can), I wouldn't be able to learn to access the port myself (I learned, and now am very good at it), the needle might pop out since it's in there all the time (no chance that is happening), my skin would get very irritated accessing it every week (I actually deaccess/reaccess twice a week, and it's fine), etc. I'll answer your specific questions, and try to think of any other tips.

1. I deaccess and reaccess about twice a week, and it's not a problem. Though, I'd recommend not accessing in the exact same spot (i.e., through the same hole) where you were just previously accessed. My nurses kept doing this for the first several weeks, and it did get uncomfortable. My port has what I'll call a "sweet spot" that is a few millimeters in diameter, and that's where the needle needs to go. So, I just go right next to or right above (or below) the previous needle location, and since I'm still in this sweet spot, it's fine.

2. To be honest, I don't shower with an accessed port. I'm too concerned about ending up with an infection. But, I wouldn't shower with a Hickman or a PICC either - I had a line infection once in the past, and now am admittedly overly cautious. I know a lot of people do, and I think they use an aqua guard (or something like that). About twice a week, I deaccess in the morning and then reaccess that night. On those days, I shower. On the others days, I take a bath, and kind of bathe around it.

3. The needle does stick out, even though I use what I think is the lowest-profile needle (I can tell you what this is if interested - I just need to go look and see what I have). I won't wear, say, a tight-fitting sweater, because it's so obvious. It's not uncomfortable, I just don't like that it's so noticeable. But, if I wear a button-down shirt, or a t-shirt or polo shirt that isn't tight, it's fine. I've definitely gotten used to this.

A couple other notes:

4. I can do most kinds of exercise with an accessed port. But, I deaccess on the days I'm playing racquetball or doing any kind of chest exercise - these aren't very comfortable with an accessed port.

5. It took me several tries to get my dressing right. The nurses made the dressing very tight against the needle, so this is what I did too initially, and it was uncomfortable. I eventually learned how to put a little "slack" around the needle, and it's now very comfortable.

I've had three PICCs over the years, and I absolutely recommend this over those. I'm in the same boat you are - years of IV drugs at a time (probably two years this time, and I'm six months in). I still can't say I absolutely recommend a port over a Hickman, but I think I do. On the days when I deaccess in the morning and reaccess at night, it feels so great to be "free" - I feel basically normal. And, right now, I'm on about a weeklong break from IVs - my liver enzymes are really high, and we're giving my liver a break. I've been deaccessed for this entire break, and it's so awesome. It's nice to feel normal, even for just a little while.

It will take some getting used to, because you've had your PICC for so long. But, I think you would indeed get used to it, and once you're self-sufficient, I think you'd probably like it.

Let me know if I can provide any more info!

Jim

 

[MichaelL]

Jim -- thank you for your thorough and thoughtful reply! This answer my questions so I have to give it more thought. I suspect I'll finally get a port in the next few months.