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Port for TPN?

momto2girls
0 Recommendations

My daughter is just starting TPN and I am having issues with the doctor's choice of a Hickman catheter. Her problems may be intermittent, she is multiply disabled and enjoys very little in life, but one thing she LOVES is her hot tub. The Dr is telling me (despite my finding articles all over the internet that say ports can be used for tpn) that a port is not a good choice for TPN. He was quick to remind me that she would not be able to use her hot tub while accessed, which I knew, as we had a short 6 wk TPN course about 18 mos ago, but with a Picc line, so I've been researching things knowing it might again be in our future.
I REALLY don't want her to have a hickman, when (if) this current issues subsides I'd like to be able to de-access the port and forget about it (except for the monthly flushes), where the hickman will require daily care as long as she has it. Knowing the port would be there when needed but would allow her to enjoy her hot tub when de-accessed, even if only on dressing change day for a short while each week, would be a huge benefit for her and us.
I know there are people out there who have used Ports for TPN, please let me know you're out there!

Explore topics in this discussion:

Exercise Cancer MRSA Surgery Crohn's disease Childhood cancer Brushing Chemotherapy Pain Cystic fibrosis

19 replies

regbrigidmom

Unfortunately, all I have heard about using a port for TPN goes along those same lines - it took just over a month of full time TPN to clog up my daughter's port irreparably - requiring surgery to remove it and place a Broviac. Prior to that, her port had been used daily for hydration (and 2 short courses of TPN) for 15 months. TPN leaves sludge that basically becomes cement and can't be broken apart. The amount of time differs from person to person, but the design makes it very common. I've heard it from several sources - even though there are a few people who do very well with a port long term, it is the exception, rather than the rule.

Generally, if it is being implanted for TPN, you won't see too many ports going in.

momto2girls

Thanks! Wish the answer were different though. The literature out there does not specify thisd (I can usually find things if they're out there!), I have spent most of the last 24 hrs looking for more info!

daviandsteve

My experience has been quite different. I've had ports for more than 24 years, and I love them. The first one lasted over six years. I lost it because it became infected. That was in 1992, before doctors started attempting antibiotic therapy; if you got an infection then (port or other line) the catheter was pulled. Otherwise, I might still have that line! I had had Hickmans for the first couple of years on PN, but they became infected easily - one lasted only 8 months! One infection occurred following swimming; I had covered and taped my line just so, but water seeped underneath the dressing anyway.

I've had my present port for 4 1/2 years, and it flushes beautifully! I am very careful about thorough flushing, however: I flush with 20 ccs of saline afer TPN, and 30 ccs after a blood draw. Followed by heparin, of course.

Davi

momto2girls

THANKS Davi, I KNEW I had heard that it was possible! We don't know how long she'll have issues and need TPN, maybe for a short time, maybe forever, but it just seems like a Port is really a better option for us.
I am glad to hear things have worked out so well for you.
Joan

Genia

I have a question about accessing ports. Does it hurt? I have a 3.5 year old son. He has had a subclavian central line since he was 8 months old. He currently uses TPN nightly but we may be moving towards a time when he could use it less frequently or at least less TPN but more fluids. Does it hurt him to puncture the skin?

Thanks,
Genia

dreamlady1931

I have a port--which was initially implanted for chemotherapy. When the SBS that came as a result of surgery for cancer resulted in severe malnutrition, I began tpn and later, fluids only, thru my port. I currently have my 2nd port and it will probably be removed in Dec.

1. I loved my port: early on, my port was accessed by home health care nurses or ER nurses. and I ended up with several sepses. But, i love itbeven more after my GI insisted that it be accessed and deaccessed daily (well, we were compliant 3-4 times a week! LOL) My husband did all the accessing and i could handle deaccessing just fine.
2. I lost my first port after about 2 years--from a sepsis that had me hospitalized 12 hours after a CT scan where the port had be accessed by hospital staff after they blew the needle. No sterile field--i was a lot less than assertive and ended up with a horrible infection. Treated with antibiotics, labs would clear for a few days, come back, clear, repeatedly until the port had to be removed. Interestingly, it turned out that a clot had been thrown to a vessel above the port and as it dissolved it would start a new infection. BUT, the port itself, was filled with some sort of material--the surgeon called it corrosion--but build-up makes up more sense.

3. I have been a couple years without need for tpn, fluids or chemo. The last time i was seen at the oncology clinic, the chemo nurse was surprised that i still had my port. According to her, ports are more likely to cause clots. So now i really want to check that out!!!!!

4. Port placement--for my first, i was totally anaesthitized and the same surgeon who did my bowel resection placed it. No issues with healing, local pain, nada!
For my second port, it was placed by an interventional radiologist---because the port was place on the opposite side of my chest, there was significantly more tunneling and i experienced a goodly amount of local soreness for a couple weeks. While it was an outpatient procedure, i did have to go back to the clinic to get redressed because the bleeding didn't stop. Gosh knows i already had no energy! Didn't need that.

I have never asked and WILL what would happen if 2nd port was removed, would/where would a 3rd port be placed.

Good luck !
Mary

dreamlady1931

Genia,

About hurting:

First of all, i am the biggest baby in the world when it comes to needles.

Soooooo, initially i was petrified at the thought of accessing the port. So, they gave me a local, cream anaesthetic to use. Unfortunately, nobody told me the RIGHT way to use it. So, the first time, i was fairly stunned by the experience. The needle for port access is larger than a needle for lab draws. BUT, a cream called emla--i think!--is available that deadens the puncture feeling part of the access. What is left after that is pressure--which doesn't hurt.

But, another point: after the first few accesses, i often felt nothing when it was reaccessed. The hypothesis is that the area kind of deadens. Mostly now, i don't even feel the needle puncturing my skin only the pressure of the needle going thru the port membrane itself.

Gosh, i ramble! Hope that helps
Mary

daviandsteve

The skin covering my port is pretty much toughened up at this point, so I rarely feel anything at all when the needle puncures it; occasionally, I feel a slight pinch. When the port was new, I used Emla cream, which is lidocaine and prilocaine (there is a generic). About a half hour before accesing, I would apply a dab to the skin and cover it with a small tegaderm dressing. This cream completely numbs the skin! Note, though, that it is important to thoroughly wipe it off with an alcohol pad before begining the sterile procedure of port access.

I do use my port for blood draws, but I learned the hard way NOT to have it used for procedures such as CT scans. Most technicans just don't have adequate skills for dealing with a central line. Besides, the CT contrast is very thick and doesn't easily flow through the 22 gauge needles that are commonly used for accesing ports.

Davi

arizona91003

My daughter (6) is tpn dependent and has a port. Id be more than happy to answer any questions you have.. She has been on tpn since birth and will continue long-term.

arizona91003

My daughter is 6 and doesnt mind the pokes.. She is on tpn 3 nights a week and depending on what activities she has for the week I stick her 1 to 3 times per week. I think the quick pinch is def worth the freedom she gets to have when she is deaccessed.

momto2girls

Thanks all! There is more to the story than I put initially....we discussed a PORT specifically with the staff here at the hospital, as we entered in a bit of a crisis situation. I explained to the peds staff, and to my daughter's gi why, specifically we would like a port for her (using the comparison a Picc line, as that is what she had before). For 3 days we discussed PORT with her team of Docs, never saw the surgeon but was told they were in the loop, last I was told was "they agreed to do the port later today or tomorrow". My husband came to take over for 24 hrs as it was friday afternoon and I hadn't really slept well since Sunday night.
The docs came in later and told my husband that our daughter was scheduled for first thing Sat am for her line placement....surgeon (intern level...?) came at 930 pm to have consent forms signed....husband says to Dr, "we've been trying since Wed to get a port placed" she replies, "we also call it a hickman", no further discssion, my husband thinks port is to hickman as gbutton is to mickey.....just a brand, so he signs.
I arrive back Sat afternoon, and DD has a hickman.....
In discussions with the docs to find out HOW this happened, the doc who brought the consent forms did not disagree with my husband's version of events, she simply said, "when he said port I didn't realize he meant PORT" WHAT??????? Unfortunately he wasn't familiar with the term Hickman, as that would have set off alarm bells for ME, but he should not have had to know everything, it should have been explained when he said PORT. Enough ranting...

It seems that everyone that decided "hickman" thought that someone else had talked to us....SO, now we're stuck with the Hickman, at least til she has another procedure for something. Once my daughter's regular GI doc, who's FABULOUS came back from his weekend doing Navy Reserves training he came right in to see us, after having recieved an email regarding what was happening. HE talked to the surgeon, who now, miraculously, sees the light and now is not arguing against the port....but as much as I'd like them to rip out the hickman and place the port before we leave, the GI feels that that is too much to put my daughter through right now. I'm mad like crazy that this has happened, it should never have been this way, but now we have the hickman, and hopefully in a month or two when my daughter is having a scope or some other procedure to figure out why her gut has practically shut down, she'll get her port.

Anyhow, thank you all for your help, it seems all the surgeon needed to change his thoughts on the appropriateness of a port for my daughter was to talk to HER GI doc, he now says that they can remove the hickman and place the port in the same location, using the same vein, she won't lose it.

Frantik

Hi there:

I'm so sorry to hear about what happened with your daughter and the situation with your husband and the doctors. That is just maddening and I really feel for you.

I also have a Port for TPN, and in my case it was my care team that pushed it on me. They felt strongly that it would be best, and they were 100% dedicated to getting me to learn how to access and de-access the line myself. My situation, though, is that while I have a lot of serious health problems, I work nearly full time and eat a fair amount. But b/c of malabsorption, I am on TPN 4 nights/week - 10 hours. I have been sick on and off my entire life and I survive by trying to be as "normal" as possible. I have given up so many things and made so many compromises, I was pretty sad about all I felt that I would have to give up to live my life on TPN. The Port, as you have rightly noted in the case of the hot tub for your daughter, doesn't require you to give up quite as much. That's a big deal.

It took a bit of time, but I learned how to do all the care for the Port myself. It's been ages since anyone else accessed my line. It was nerve-wracking at first, but eventually became like the rest of my night ritual (brushing my teeth, contacts, etc.). So that's a bit of an exaggeration, I'm always take the sterile procedure very seriously, but I'm no longer scared. And have come to believe that I do it better than anyone else. I mean, who cares about it as much as I do? And it's not rocket science, it's just a step-by-step procedure. You do slowly, methodically, and never cut corners, and you should be fine. Everyone else is right about the pain. I never found the pain to be much (it's not the most sensitive area), but even so- the skin does get tougher as time goes on.

Since 2005, I lost one port. I was having unidentified fevers, and they suspected infection. But it was never found in the Port, even after they removed it. And we found another likely reason for the fevers. So, now I wish I'd kept it, but that's water under the bridge.

So, this is only my story since you asked about other people who are on TPN and have Ports. I understand full well that each on TPN have unique situations, both in terms of priorities and medical issues. What works perfectly for me, might be a disaster for your daughter. I don't want to speak out of turn, as I really don't know what all the parameters are. But I do want to say that it's worked very well for me. And I do understand and respect your desire to make your daughter's quality of life the best it can be. As a childhood cancer survivor, I feel lucky to have survived so long - but at the same time it's more about quality than quantity. You should fight for the pleasures that your daughter has in her life.

momto2girls

Thanks Frantik for your story. As with everything else I realize that everyone is different, and reacts differently to different things. I do appreciate you taking the time to tell your story.
BTW, is that a Cavalier puppy in your picture? We have a Cavalier, he looked just like that when we got him!
Thanks again!

cp20855

davi,
interesting about 20 cc and 30 cc saline flushes!

jack (husband) wants a port after his current picc gives up/infects. do you access your port every day? or leave the line in for a week or so?

do you use ethanol locks?

thanks,
carol

turtle

hi.
i've had like 7 PICCs (have one now) and 2 ports in the past 5 years as i've been on and off of TPN, hydration, nausea meds and antibiotics (currently on hydration and antibiotics-for MRSA NOT a line infection...). my first two PICCS were done by docs in interventional radiology and i was not sedated like my GI doc ordered. i have baby spider like tiny veins...i know so many of us have venous access issues. after my 2nd picc infiltrated, my GI doc said i needed to get either a port or hickman/broviac line...and while it was my decision, he (and the surgeon) recommended a low profile port. i was admitted to the hospital for the procedure and met with the surgoen for the first time the day of the surgery. i was shown what a port and hickman look like and after talking about it with my dad i decided on the low profile port. while not vain, i really didn't want the port just under my clavacle where it would show through shirts, so my surgoen (who's awesome) said he (commonly) put ports in women in the breast area, he even had me put on my bra and marked where the straps are so that the port wouldn't rub on my bra! (i've now had two ports, one on each side, in basically the same place). for me it was the first surgery i had ever had and i had a LOT of pain with the implant (the removal is much less painful) a lot of that has to do with the pocket that has to be created for the port to sit in. i also have a great (inpatient) central line nurse (who i still use inpatient even though she's peds and i'm not anymore...the peds gi group that i still use has many older patients, mostly with CF (cystic fibrosis), but have no problem with me being older) who started me on a crash course of learning sterile technique!! which i could now easily do in my sleep or teach even...in fact that nurse knows that i have better tech. than many floor nurses...and i watch EVERYONE who comes near my line like a hawk and if i dont like what i see i speak up. like someone else said, its my body and i have to live with whatever choices the nurses make, whether that means they are diligent nurses w great tech or not so much...i'm the one who'll have to be on months of antibiotics for their mistakes. i try to be polite, but firm. and occausionally have to pull the calling the supervisor card and make sure that "i NEVER get assigned that nurse again" i dont have to do it often, but when u're in the hospital for weeks or months at a time, then it does happen.
i've heard soooo many people say that accessing doesn't hurt after awhile, but it ALWAYS hurt! BUT i found a way to 'deal' with that by using LMX (which is a 4% lidocane cream) its kinda pricey but i find it works sooo much better than EMLA. but there is a proper way to apply it. first i was taught to take a little bit and rub it all the way into the site, then put a generous amount of it on top covering the area. i'm allergic to tegaderm, so i'd put a piece of gauze and hypafix tape over it and set the timer for one hour. even though the package says 20-30 min, i found that, that was NOT long enough, but leaving it on for one hour worked very well.
i also learned how to access (and deaccess) my own port, in fact the teaching started the day after the surgery...my home health nurses said i learned how to access faster than anyone else they'd every worked with and did it better too. while other nurses might miss, i got to the port where i'd make it on the first try well over 95% of the time. that takes practice too! at first i used a mirror, but then got to the point where i didn't need to anymore. i accessed/deaccessed just once a week, though later on changed the dressing twice a week. because i had to use what is called a non-sterile dressing, meaning the tape used (hypafix) was non-sterile (the guaze and everything else was sterile of course, and i also used a biopatch, which i also found just helped in comfort too), they wanted the dressing changed more often, but not too often, as everytime u open it up it opens up the risk of infection. i NEVER once had any clogs or clots or anything like that with my ports. being on immunosupressants for my crohn's disease it puts me at a higher risk for infections and so eventually both ports were removed bc of infection. IF you only need IV therapy for a few weeks or months, then i'd recommend a PICC (though i highly recommend, and will now ONLY have the PICC nurses place them), BUT if you need longer term therapy and have the support medically and with family then i really do think ports are great. i mean if i wanted to go swimming with my friends than i'd just deaccess and go, i didn't have to worry about infection. i've ALWAYS been told than i am NEVER to go swimming or in a hot tub with an accessed line, EVER! and i'm super careful and paranoid about my lines always and in the shower, its harder to cover an accessed port than a picc, with the picc i first tape a washcloth around my arm (just in case some way did get it, it'd go into the cloth, which never once has been wet), then i take a plastic zippy bag which i cut into a tube and use lots of tape to secure it around my arm, then i get a second bag and repeat, just in case the first one leaks...i've never once had the wash cloth or dressing wet. i hate pulling off soo much tape, though after it being wet, it can be slightly easier, its much better than getting an infection!
when i first started TPN i was going to a university full time and living on campus, so unlike most college students, i brought my TPN with me and i had friends to help me tape myself up (i had a picc at the time) for my nightly shower, since it can be hard to tape ones are one handed. ;-) i even took my TPN to my 8am calculus class. and unless u noticed a thin tube coming about of my sweatshirt going into a backpack, it wasn't noticeable...in some ways i felt proud, that i was (at that time) still able to go to school and had found a treatment that was working for my crohn's and that was getting me off the steriods. though the bowel rest part really sucked! ALL my professors knew about my medical issues and that i was in the hospital for a weekend (which turned into a week) when i first started TPN and were all very supportive. i was even taking a tap dance class (though i got my stares then, the TPN was off, but its very hard to hide a picc line in a tank top...it got very very hot in the afternoons and in the dance room). the only embarassing part was when the alarm would go off in class from the cadd prizm pump. i'd just slip out quietly from lecture fix the problem or usually its bc i'd be done, i'd flush, hepren lock, take the batteries out of the pump to turn it off, and slip back into class like 2 min later. until my health deterated to where i'm now completely wheelchair bound, though i'm working everyday to get stronger (MRSA sucks btw)...i really have tried to live as 'normally' as possible. not many college students tote around an IV pole...but i'm not many college students. anyways, i did love my ports when i had them...and i'd recommend (if its suitable) a low profile port...there are newer ones than the models i had...if you have any other questions or if there is anything i can do to help please let me know! i wish the very best for you, your daughter, and your family.
*take care*
turtle

momto2girls

Thanks Turtle! As everyone else here you seem to be dealing with you situation admirably! I really appreciate you taking the time to write your experiences!

daviandsteve

Carol,

Having a port really makes sense for me, since I am only on PN three times a week, plus hydration as needed. I generally deaccess when I finish an infusion.

There have been times when I have had to infuse daily. What I generally did then was to deaccess a couple times a week so I could bathe or go to my pool for water exercise.

It is my understanding that a port should be reaccessed at least once a week.

I don't use ethanol locks. I came home from the Oley meeting all excited about doing so but, after discussing it with my pharmacist, I've decided to wait. She said there are drawbacks to it, such as an increased risk of occlusions since you are not using heparin. She was going to get me some more information, but hasn't done so yet. Since I've had relatively few infections, but have had problems with blood clot occlusions (not with my present line; the surgeon did angioplasty on the vein before installing the line - this has made a huge difference!), I've decided to wait.

Davi

cp20855

thanks for info. jack has ethanol 3x/week and heparin 4x/week. he does access every day. do you do your own access? where is your port exactly? (someone wrote that it was easier for him to reach himself if it was a bit below the nipple.)

carol

Novagrad

I totally agree with your doctor that a hickman is the best for daily TPN. Your daughter might be at more risk of infection if she has to have her port accessed each day for TPN. It does not make much sense. However, if it is only your goal now to make your daughter enjoy as much as possible, then I would think your surgeon could put the port in instead. So many people on this site have ports and are on TPN. I have a hickman but I understand why you would want a port.

Mimi

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