Topic: Port--how long after inserted before access and use it in terms of pain?
Rumigirl
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Member # 15091
posted
For those of you who have, or have had, a port, what do you recommend in terms of whether to wait after it's inserted to start accessing and using it?
I could have the surgeon access it after inserting it, while still under local anesthesia, so I could use it right away. But I've heard that it can be pretty painful for a while, and I may want to wait a while before having it accessed and using it.
If you recommend waiting, how long do you recommend? I know this is an individual thing. I am pretty sensitive, so I'm a bit apprehensive about the pain level for a while.
But I do want to get going with IV abx as soon as possible, as I have been suffering terribly with the Bb.
I thought long and hard about deciding on a port, and then ended up having to wait almost a whole year before an LLMD was willing to rx a port.
I decided on a port, because I had on-going pain when I had a PICC line last year. I also will likely be on IV abx for a really
long time. I think I had pain with the port, because my veins aren't so great. (When I tried using peripheral lines, I had 5 out of 6 veins collapse--painful!).
Any recommendations? The LLMD who finally ok'd the port probably doesn't know enough about ports to answer this question.
Posts: 3771 | From around | Registered: Mar 2008
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posted
The surgeon who puts it in should no the answer to the question. I think a home care nurse came 2 days later to access it. I do think they access it in the operating room because they test it to make sure it works. It does get less painful as time goes on bc scar tissue forms. I have had several picc lines and a port and have found the port less bothersome. I have young kids and they would constantly pull on the picc line. It also got infected. I find the port less annoying to sleep with as well. My nurse has taught me how to take out the huber needle. This way I can take a "normal" shower . I also use a numbing cream that my surgeon wrote the script for before she comes. Be sure to ask for a less obtrusive port. I forget the proper medical term for it. This is especially good if you are on the petite side. Good luck !
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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i had same questions! thank you gatorade girl for your insight.
I was worried about the kid issue...so that pretty much sold me
Plus the weight limit being 5 lbs for lifting! Definitely not conducive to kids!
Posts: 104 | From No. VA | Registered: Aug 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I'm kinda impatient when it comes to starting treatments (want to get better now!). I would probably opt to have the surgeon access it so that I could start to use it right away.
If you have the patience to wait a day or two for the nurse to come to your house, access it, and show you how to use it then. That might be best. You will feel better then and be able to think more clearly to remember instructions. After surgery you will be worn out, groggy, uncomfortable, and anxious to go home. Not the best time to learn something important.
Hugs Rumigirl, I'm glad that you are finally getting the care and treatment that you so need
Let me know when your procedure is scheduled so that I can pray for you, OK?
Posts: 5237 | From here | Registered: Nov 2007
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posted
I remember the kind of port you want to ask for. It is called a low profile one. It does not stick out of your chest as much. The port goes underneath the skin. The huber needle accesses it....my daughter calls it my thumb tack. Let me know if you have anymore questions. I have had mine since April. Good luck!!'m
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, guys, for all your help and good wishes! That's helpful, gatorade girl. I will ask for the low profile port, because I'm kind of small and bony on top, so not much padding there.
Gatorade girl, did you have much pain for a while after the port insertion?
I know some people have said that they were in bed for a few days, and had pain for quite a while. That's why I wondered
about waiting or not on using it. Because accessing the port means sticking a needle into where you just had the surgery.
But I do want to start tx ASAP, though, so I probably will have the surgeon access it. Sammy, I will let you know when I have a date, bless your heart!
Posts: 3771 | From around | Registered: Mar 2008
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posted
Hey Rumigirl. Glad you finally found someone to give you another round of IV. Good luck with the insertion procedure. Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Anyone else who's had a port? I know one person who had a lot of pain afterwards, who said that she didn't access and use it for a month, due to pain! She said that the nurse has to push hard to get the needle in the port, which is through your skin.
Also, how do you take a shower with a port? There must be a way to cover it up, right?
Posts: 3771 | From around | Registered: Mar 2008
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I did have pain afterword, but somehow I managed to let e nurse access it. It is a quick procedure. Just think of it in those terms. You can also ask for the lidocaine cream which I found out about later. You put it on prior to the nurse coming and put a bandage on top...like a sorbaview. My nurse taught me how to take it out so I can put the cream on it and take a good shower before she comes. Taking a shower is tricky....it is really hard to wrap it up since it is in your chest. I take a shower when it is accessed with just my back basically towards the shower . I kind of turn to the side ,but am careful not to get it wet I wash around it and my neck with a wash cloth prior to getting in the shower. I have long hair and am scared that I'm going to have waster dripping on it so I wash my hair over the sink. This is a a five day a week process. On the other two days (after I finish my infuse before my nurse comes) and on the morning of.....I feel very spoiled by a long shower and hair washing. The port is under your skin when it is not accessed you can get it wet as much as you want. I also take lots of baths when it is accessed....I just don't let the water get too high. I know it sounds crazy, but I prefer this to the picc. I feel like I am able to infuse myself easier and don't have my children pulling on it by accident. My youngest thinks this is the norm and asks everyone if their mom has an iv. Unfortunately, it just has become part of the norm for me. Please feel free to ask away...
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Btw...rumigirl. When the home care agency calls ask for a huber needle that is small. Tell them that you are small and bony. They sent out an inch one and i was really uncomfortable. The nurse did not have a small one in her bag. Ask them to send you both e 1/2 inch and 3/4 inch. They sent me an inch even though I said I was the size of a pediatric patient.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, thank you, gatorade girl! That helps. I thought that there was some kind of thing you could put over the port to shower. Maybe plastic with tape?? The only thing is, you can't risk getting it wet!
Posts: 3771 | From around | Registered: Mar 2008
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posted
I have a Port. Since inflammation is my middle name, I did have alot of pain and inflammation after it was placed. However, I needed to start IV therapy as soon as practicable. I waited about 7 days before accessing the port. My post surgical inflammation didn't really resolve for about 4 weeks.
There is a numbing cream that your doctor can prescribe for you. You use it one hour before the huber needle is inserted into the port for access. I think the cream is called Emla? I'm not sure on that name.
I don't use the numbing cream since I don't deaccess or access my own port. Since I'm always accessed, I can't use the cream because of the one-hour time it needs to work. The home health nurse just comes and deaccesses and accesses.
If your nursing agency or doctor will agree for you to learn how to deaccess the port yourself, and will prescribe the numbing cream, then you can deaccess your port yourself by pulling out the huber needle and any other steps necessary prior to your nurse coming to reaccess.
I think the most important thing to keep in mind is that you be sure to request that all home health nurses which are assigned to you be qualified in Port care.
I had a crappy home health nurse in the beginning. The nurse was terrible at accessing my port and sometimes the stick was so bad that it caused pain for the remaining week.
In fact, the first time the nurse came to access my port, he was unable to. Incompetence! I had to return to my surgeon and have him access it. It turns out that my original, crappy nurse was really a PICC nurse and not a Port nurse.
For showers, we replaced our main shower head with a double shower head (i.e., one regular shower head with an attached hand held shower head) at the hardware store. When I want to use the shower, I just flip a switch on the shower head and use the hand held shower. That way I can control the water flow.
And, this might be overkill, but I also use about 3 layers of Glad Press-n-Seal over my port, and then surround the Press-n-Seal with waterproof, medical tape. That way there is no way that spraying water can get on my port dressing.
I don't think the Port dressings are really meant to withstand us standing under showering or running water. So, it's best to cover up and try to control water flow even when your port dressing is covered with saran wrap and medical tape.
And in contrast to gatorade girl's experience above, my Medi Port requires a 1" Huber Needle. The 1/2" Huber Needle is not long enough to access my port. I think it might depend upon how each person's individual port is placed. That is, how much muscle tissue is covering the port, or whether the port is placed kind of immediately under the skin, etc.
My surgeon told me at the outset when I was in recover after surgery, that I'd need a 1" Huber Needle for my Port.
Hope this helps.
Posts: 503 | From Maryland | Registered: Oct 2007
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Yes the cream is called emla cream. If you do get permission to deaccess it yourself....it is pretty easy. I hare with fuzzy slippers about the not getting wet thing. The emla cream does help. My nurse did tell me that scar tissue does form and it does get less painful with time. I use the same nurse every week. It has been helpful. She knows me and my port really well.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Haley
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Member # 22008
posted
I waited one week before having the port accessed even though the surgeon said it could be accessed sooner.
Ask the surgeon to give you the correct needle size for your port. I didn't have that information and had to learn through trial and error. I also wished I had asked for a prescription for needles as my doctor won't give me one.
I personally never took a shower. I only took baths when I was accessed. I would not let one speck of water near my port. I was hypervigilant about making sure I didn't get an infection.
I used a home health care agency that specialized in infusions. I called my insurance to see which infusion companies were covered. My nurse was very familiar with ports.
Posts: 2232 | From USA | Registered: Aug 2009
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Just FYI, so you don't have to go through the garbage I went through, the home health nursing agency I used was recommended to me by my infusion company, my insurance comapny, and my doctor. In other words, all of their nurses were supposed to be skilled and competent in all the various forms and methods of IV infusion care.
Sadly, that wasn't the case with the Dud-of-a-nurse that I got in the beginning.
I just assumed that since my infusion company highly recommended them and I requested a Port nurse, that they knew to send me a Port-skilled nurse.
Just demand that you get a nurse that is not only skilled in infusions (as Haley suggested), but also skilled with Ports.
I don't want anyone to have to deal with the fiasco I did.
Posts: 503 | From Maryland | Registered: Oct 2007
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Sammi
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When I had a port, I used Aquaguard covers to take a shower. They work great. Realize though, the adhesive is very sticky. You can definitely feel it when you pull it off, so pull it off very quickly.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Wow, thank you, guys, all this info is REALLY helpful! There are so many details to get right in the beginning.
Thank you FuzzySlippers for the heads up about demanding a port skilled nurse; I wouldn't want to go through what you went through.
Thank you both Fuzzy and Sammi about the hand-held shower head and the dressing for showering. Both good ideas.
Having the help and support of all of you guys is invaluable. I don't know what I'd do without it.
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Sammi
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I agree with FuzzySlippers, make sure beforehand that the nurse who accesses your port has a lot of experience with them.
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Rumigirl
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Member # 15091
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Do people who have or have had ports recommend having a visit with the surgeon ahead of time to discuss what kind of port, etc.?
Or can you do that at the time of insertion? Thank you!
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sammy
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You should have a consult before. That way you can discuss what you want and need. Your surgeon might prefer only one type of port. At the time of insertion everything will be prepared, it will be too late to order any different supplies, etc.
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Rumigirl
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Thank you, Sammy, that's what I'm going to do.
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