Port-a Cath

My 6 year old has a port. It has been a lifesaver for her. She has very “valvey” veins & getting a good IV going was extremely difficult. It took up to 7 attempts to get a good one. NOT a fun time for her, me or the nurses.

She had the port put in Aug 2006 after having her Broviac catheter (tube hanging out her chest to administer the IVIG through) removed due to an infection. It was a fairly easy surgery. It took longer than I expected because the dr had a hard time getting the port in the right place since she’s so small. She didn’t really have much pain afterwards. She woke up crying because she had an IV in her hand & it was hurting her so the nurse tried to force her to take some pain meds. Well…you do NOT force Emily to do ANYTHING so she spit it back at the nurse. I think I may have given her some Children’s Motrin for the next or so. After that she was perfectly fine. The area was a bit tender for a few weeks but nothing unbearable.

She has a very faint scar on her neck & right above the port where the stitches were.

If you decide to go with a port then you have to make sure that you get a nurse who knows how to access it PROPERLY. The access MUST be COMPLETELY sterile or else you risk infection. After our scare with the Broviac infection we do NOT take any chances.

If my 6 year old (4 at the time of getting it) can do it then surely you can too. Honestly, I think it was the BEST decision we ever made.

Good luck,
Kelly

I have had a port since the end of Aug. I get my chemo and IVIG through it. Also blood draws are done thru the port. As Kelly said it has to be accessed and flushed correctly . When not in use it must be flushed at least once a month so it doesn’t clot off. For those of us with “crappy” veins it is a life saver!

I had a subclavian port installed and gave myself ivig infusions after being “trained” by a nurse. Not much they could teach me by then, but for insurance purposes and to let the doc of the hook it was a requirement.

Lisa

I have a port just below my right collarbone…it is the second one that I
have had. It’s the greatest thing…my veins were much too hard to access
and it just hurt too much.

I have a nurse that comes to put the huber needle in, flush with saline and
heparin…then leaves. She comes back when it’s finished to take out the
needle after flushing it again. This is approved in the state of Florida,
because the insurance companies won’t pay for a nurse to sit for 6 hours.
If the patient is elderly and incapable of comprehension, then a nurse will
be required to stay. Personally, I love not having a nurse sit here all day –
it allows me to do things that I want to do – without entertaining someone.

I am free to move around without having to worry about disrupting a tube
in my arm, or bumping it. After it is infused, there isn’t even a bandaid put
on because it isn’t necessary.

I am 200% for ports…after you get one, you’ll kick yourself for not having
it done earlier. I had mine put in outpatient surgery – left the same day.
There is a little bump, but it really doesn’t bother me at all.

Good luck…you will love it!!!
There’s nothing to be afraid of.

Miami Girl

my son had a port for about 6 years although his was put in because he had so many iv’s for antibiotics that his veins were getting weaker. I was taught to give his meds myself and that was one of the best things we ever did. his was just below his collar bone and was just a little bump. he had it put in out patient and came home the same day with almost no pain at all. My son does not have CIDP or GBS he was born with a couple of very rare conditions the docs said he would not see his 1st birthday and with alot of hosp. stays and over 50 surgeries and alot of arguing with medical staff he is doing well now and is 16. He sometimes when blood work is needed wishes he still had the port. I would recommend it and if i decide to go with IVIG i will probably request a port also because my veins suck. good luck.
sincerely
Jody

Lisa

One more thing…the doctor puts a little cut into your upper chest area under
the collarbone, tucks in the port, feeds a plastic, tiny tube into a vein and
then puts a butterfly bandaid over it to heal…that’s it. You have zero
chances of getting an infection because it’s under your skin…nothing is
exposed to anything. Unless the nurse uses a dirty huber needle, your
chance of infection doesn’t exist.

Good luck

Miami Girl

Hello, three comments since it is port discussion day.
1. You can ask that the port be placed while you are asleep under anesthesia in outpatient surgery that you go home from after it is over. Sometimes ports are placed in adults without general anesthesia (just using local anesthesia), but this may be a good time to be treated like a child!
2. Personally I have seen a lot of reactions to IV IgG including severe allergic reaction to IV IgG (anaphylaxis with trouble breathing, low blood pressure, and swelling of the airway). It makes me really nervous thinking about IV IgG at home and I think there is too much danger with administration without someone able to act if there is an allergic reaction. People can do well for a long time with IV IgG and then react. As well, due to the national shortages, sometimes the brands change and there is a larger chance to react with changing brands because there are definite differences in them. It may be nice to not be stuck at a clinic or have a nurse stick around, but there are dangers with IV IgG that should not be treated lightly nor should insurance companies take risks with people lives just because it is cheaper.
3. There are risks of infection with a port-a-cath. It is not zero, but also is not as great as with a broviac/hickman/central line or PICC line in which tubing exists the skin and flushing is more frequently needed. Any time a needle goes through skin to the bloodstream or a medicine is given IV, there is a risk of getting an infection in the bloodstream and that the infection may settle on the portacath. Most of the cancer patients with ports that I work with also get antibiotics before dental procedures (like SBE prophylaxis) to prevent infection (from the teeth that gets transiently into the bloodstream) settling on the port-a-cath. There can be an infection that smolders under the skin along the pathway of the tubing for the port. I have seen a number of people with ports in which there was excellent care with sterility that still got an infection. Having a “foreign body” in ones body has a risk you have to respect at the same time as appreciating the benefit of having an easier time getting IV medications.

With hope for cure of these diseases.

Withhope

I do understand that with “anything” there is risk involved…but the ratio for
Lisa to have an infection with a port is quite small as opposed to those that
have had it done. Yes, with a Picc line, I would worry, a little about that.

With any procedure done, there could be a multitude of problems, in or out
of the hospital…the nurses that do my infusions are LPN’s not RN’s and I have
had great successes with their accessing the port. I used to use lidocaine
before the huber needle was used, but hated the acidic feel of the solution,
then I had ethyl chloride – the freezy-stuff – but the majority of hospitals
here have banned it because it can easily be contaiminated, but my LPN
stretches the skin over the port and I feel nothing.

In the hospital – I’ve had nurses trip on the tubing…ripping out my IV, I have
had nurses unable to access my port so they call oncology to do it…No
thanks, I’m more than happy to have it done at home. As for going into
shock, my nurse has told me about it and what to do, if I get the symptoms,
which hasn’t happened…it’s all about asking questions until you feel that
you can take care of it.

If the homehealth nurse uses alcolhol swabs, iodine tips and you personally
are clean, the access should be no problem…if you worry what if all the
time, well, you just won’t get things done. Lisa seems a little apprehensive
in getting a port and by telling her how easy it will be and that she should
not be afraid – is the real issue. Telling her she could get an infection does
seem important, but her psychological feelings are more important than a
possible remote infection. Heavens, everytime someone has any invasive
surgery there is risk…but if it’s needed you do it. That simple. There are
so many positives of having a port…I focus on the benefits, not the negative
aspect…driving can kill you, but we still do it. I’m not trite on the possibility
of ever getting an infection, but again, the chances are slim. It could happen
but I doubt it.

I have never had an allergic reaction to IVIG, that seems really tough to
deal with…I can imagine the feeling. It is good that you know that so you
won’t have to go through it again…it really is so different for every person
here, it never stops amazing me the variants, residuals, the meds, side effect
of drugs that we all go through.

Have a great day.

Miami Girl 🙂

If you have taken ivig for a long time without any reactions, the chances for you having a reaction are almost nil. The best scenario is having someone close to you, a family member perhaps, trained with the port and ivig.

i’ve had a couple of picc lines with little sucess, infection would set in. i’ve been thinking on a port if the suggestion of a picc is brought up again. i’ve never had a reaction to ivig, i would be quite comfortable administering it myself, but since it is considered a “blood” product where i live, a nurse is required to stay with me. this is usually an order out lunch and movie day for the two of us.
infection is always a risk for us no matter what, that’s part of the terminology “auto-immune”. for what ever reason our immune system has gone haywire.
i’m glad i read this thread and glad to see that so many other have a port and like them.

Lisa
It is possible to have a port implanted in your upper arm if the chest placement seems daunting.

It’s a much smaller port made of titanium, with a catheter running from the port, up a vein in your arm and into your chest just like a PICC line.

It’s implanted by a radiologist in a radiology lab, and you are sedated but stay awake during the procedure (conscious sedation). It should be less expensive to implant compared to a chest port since it’s done in a lab and not the OR.

I’ve had one for over five years and have had no problems. There are several members of this forum that have gotten one. I get IVIG every six weeks, and have found it easy to keep the dressing dry when the port is tapped.

Ask your doctor about it, or actually your hospital radiology department – they should know!
mark

Lisa – I’m glad to hear that you got the port & it went well. Sorry about the soreness.

I don’t think your body is going to reject the port. Don’t even worry about that. Honestly, I think I’d have to agree with your old school nurse. I really feel that people who receive IVIG should be monitored by an RN. The home care nurse should teach you & your husband how to care for the port & access – in case you need it in for a few days. It’s really quite easy. I usually flush Emily’s port & pull it at the end of each infusion.

Kelly

Dear Starli:

I’m a CIDP patient and I’ve been receiving IVIg since September 2005. I decided to have a port (because of my new IVIg protocol – hopefully, only 2 more years) in March 2007, and it’s been a “lifesaver”, but a real pain too. When they placed it I got a Pneumothorax, so they had to place a chest tube and I had to stay in the hospital 🙁 Then, when I thought I was ready to use it, it got clotted (make sure it gets flushed with Heparin before and after every use), so they hospitalized me for a venogram and a thrombolytic therapy 🙁 A month later, an inexperienced nurse placed the needle incorrectly and my chest cavity got infiltrated with the IVIg, Saline and Heparin and guess what? YES! They hospitalized me because of the risks of skin necrosis. Last, but not less important, my port got infected (I still don’t know how, because I consider myself an OCD person, joking 😉 ) and I got a nasty bacteremia (pseudomonal sepsis) that kept me in the hospital for 16 days and not only did I almost lose my port, but, I was close to not been able to write this letter. In September I started my Mayo Clinic protocol. I finally found a company whose nurses are experienced in ports. Now, I’m able to enjoy my port and I have to tell you that it’s been great, but every time I use it I cant’ help but think about everything that has happened (bittersweet).

With all due respect to the persons who have contributed with their opinions I believe:

1. Getting a port should be a well thought out decision. The pros and cons should be measured in order to make your decision based on usage, the condition of your peripheral veins, and the medical care available to you.
2. The port should only be used for your IVIg or other medication (approved by your primary doctor) in order to minimize the risk of clot and infection. This is why I believe it should not be used to draw blood. And, yes, it can get infected even though it’s under your skin.
3. I have been receiving my IVIg at home, for the last 2 ½ years and I would never receive it without having a nurse present. You’re blood pressure and body temperature might drop. You might start vomiting uncontrollably. Diarrhea and migraine headaches are not uncommon. I have experienced all of these symptoms in the past and have been lucky to have a nurse beside me. An experienced nurse will also be able to recognize the symptoms of an allergic reaction.

I hope my experiences help you in making an informed decision. God bless you!

I am a nurse and I have a mediport for my IVIG. I have poor venous access so I opted for the mediport. If a sterile technique is used than there is a slim to no chance of infection as compared to other options. There are central lines that are only good for about six weeks. There are PICC lines that are only good for a short time also but if you have bad veins a PICC line is not an option. There are also Groshong catheters but those carry a higher risk of infection. The mediport if not in use has to be flushed once a month with heparin but if you are receiving IVIG treatments which are usually 2 times a month then they don’t have to be because they are in use.
To answer the other question I do my own IVIG every two weeks. I have my aunt who is an IV therapy nurse or the IV team at the hospital I am at access my port and I do it by myself at night. It is so nice that way because its on my own schedule. I can deaccess (remove the needle from the port) my self. Liane

I receive IVIG every three weeks for my CIDP and just recently had a port placed under the skin. It was a very simple procedure. VA Hospital where I had it done treated it just the same as if I were having major surgery. The only thing I am sorry about is that I didn’t have it done sooner.

Ron

Hello! I have to say I have managed to drive my self officially crazy. I do not have GBS or CIDP but I suffer from another autoimmune disease called MG – Myasthenia Gravis. I have been diagnosed with this now for over a year and have been getting IVIG treatments sense January 08. Since then every month has become more painful. So, my neuro doctor has decided to put me on a port. Though I have heard nothing but wonderful things about this, my stomach is in knots over this. I meet with my surgeon this afternoon for my consult. I do not even have the slightest clue as to what I am getting myself into. (I have done some research but not enough) I am afraid of so many things. I am hoping maybe someone can put my questions to ease.
SO, for anyone that has a portacath – does it always stick out a lot? Can it be seen easily? Does your bra straps effect it? Can you choose the size of your port or what side it is put in? How long are you sore for? Can you swim and bath normally? How soon afterwards can you resume normal activities? I know this might seem crazy but these are flooding my mind.Thanks so much everyone ahead of time. Dena

I was totally chicken about getting a port. My dad was a Cardiologist and told me not to ever get a port because of infection-no family support what so ever but they were NOT the ones getting poked all the time. I was blowing so many iv’s for IVIG the nurses didn’t want to give me another stick.For two years I held my stubborn ground-no to any port.Now I have so many ruined veins from 150 infusions without a port.

The surgeon put a pen mark just above my bra so the port wouldn’t rub against it. He put in an excellent port-it’s pointing straight out-easy to access. The nurses all very excited about mine being put in so well.

Wear a wireless sports bra 24/7 after the surgery-the kind that you can hook not pull over your head.The sports bra keeps (excuse me, guys) your breast weight from moving around and causing any possible extra pain. I even put tiny ice packs in it. It was a real life saver-believe me. Go buy one or two before the surgery and wear in bed at night too.I lived in mine for a week and remember-it is surgery so don’t over tax your side where port is.Rest/take it easy till you feel up to resuming activities. Any surgery takes time to heal.

I was given pain pills and needed them. I live alone so I did way too much too soon. No one can see your port when dressed and about going swimming-after a while.
I am so glad I got the port. I am. It will take a while to get used to and good luck.

Thanks for posting all your experiences with ports everyone! I’ve often wondered about the pros and cons and after 12 years of IVIG with difficult veins, it might be an option for me one day. It’s great to come here and be supported with great information and kind words!
Thanks again!
Kristen
cidpandme.blogspot.com

Hi all, It has been a while since I posted. I had a powerport placed a year ago in my right chest wall. I had it placed in radiology using conscious sedation. The biggest advantage to using a radiologist is that they generally use a jugular approach. Meaning the catheter goes from the port in its “pocket” up to the jugular and down to the SVC. You actually have 2 suture lines. Sometimes when surgeons place the port in the chest, they get it down into the breast tissue, so no one can see it. That can be nice, however, it can be difficult to access if there is a lot of tissue ( it you get my drift- sorry guys). Also, there is a problem called “pinch off” where the catheter can get pinched against the clavicle. This can also cause a potential for catheter breakage. Jugular approach makes that potential complication non existent. Power Ports came out a little over a year ago. They are a little bigger and have three little “nubs” around the septum that help the nurse find the septum. It also can be used for contrast for CT scans. The port is actually triangular in shape. As with any central line. make sure the person who is accessing it knows what they are doing. Make sure they WASH their hands, clean the skin for 30 seconds ( if using chloroprep instead of betadine) and allow to DRY. Make sure they wear a mask- and you too! Make sure they use a non coring needle when accessing your port. If you are not comfortable in their knowledge of ports, get someone who does. I have seen too many infected or non functioning ports due to inexperience or sloppy accessing. No excuse!
AFter the initial placement of the port, the chest will feel like a horse kicked you. VEry sore, tender and the first access hurts. Some will have steristrips over the incision, some will have “liquid sutures” Let these come off on their own. Try not to pick or pull. Monitor your suture line until well healed. Call your doctor if you have open, red or draining suture line. You will have a period of time til your body feels right with this thing in it. Get a fuzzy to put on your seat belt to keep it from rubbing. Do all those things/ activities your body will allow.
Ports can last for many years. I hope we all have that good of luck with ours. We deserve a break!
Anyone know about the SQ IG? Sounds very doable in the home. Might be a good option eventually.
Thanks for reading my 2 cents,
Charliegirl
CIDP 2004

Hubby has a port, has had it for 3 years. Our nurse uses sterile technique t access it every time. Way to close to the heart to risk an infection. We had a home health nurse suggest doing his IVIG ourselves (she didn’t like sitting so long). We decided not to with all the risks. Hubbys IVIG brand has changed 3 times, we know there are risks with a new brand. Also, having a nurse around for hubby to visit with for a few hours while I am at work is good for him. Somedays he sleeps thru the treatment, but most he has a great conversation with someone about all kinds of things.

Make sure you get a nurse you like and trust. If one doesn’t fit for you, request another. We didn’t know that we could do this at first, and had a nurse that was stealing his pain meds. Now, I “interview” a nurse before we let them stay on. The drug companies will send someone if you can’t find a nursing agency to do the treatment. We have had the best success with a nurse from the actual drug company, not a home health agency.

Best of luck to all

OK – So, I wrote in just prior to me getting my port scared to death. I have to say those first few days where horrible to me. I was in a lot of pain. My surgeon knocked me out and I woke up in tear in horrible pain. My husband was no where around so that did not help. It was not till middle of the 2nd week when I finally got used to it and comfortable again. The surgeon placed it under my right collar bone and he too went through my jugular. Though more effective it is more uncomfortable I think. You have to make that choice. So, here I am I have already had one IVIG treatment with it and an ER visit. Both where able to access it and use it with ease.[url]http://www.gbs-cidp.org/forums/images/smilies/smile.gif[/url]
🙂 How happy am I. I can barely tell it is there. The scar is bigger then I like but hey as long as I am not getting those needle pricks I will be OK. I am looking into my husband getting trained on accessing the sterile method so in the situation I need meds he can do so instead of an ER visit every time. This gets costly very quickly. About the sports bra thing, That was the best thing ever. Great advice. So, now my next question. Does anyone know how my husband who is a biology major can go about getting trained on my port so he can access it? He is great with this stuff and I think it might be worth saving the 100 bucks a pop we are spending on the ER. Everyone you have been great and very comforting. I knew exactly what I was getting into and well, that just helped so much. Thanks Ya’ll….

The new port can hurt-oh can it. I myself was in awful pain and no one here to help me. Scar tissue/collagen will grow in the area over time and support it better-so the nurses told me.It will take a few months to adjust as it’s a foreign object in your body.
It’s amazing how different each port is inserted.Mine is very close to the skin and easily accessed.So the cat always seems to jump right on it every time””
Glad the sports bra worked-sometimes I wear mine after I’m done too much-the added support keeps the pain down.Be careful of carrying heavy groceries/stuff like cat litter too and watch out for any gardening work.
When you try to swim again-do it slowly and see how you feel.

I know my nurses said they would teach/watch me using the saline/etc.syringes through the tubing to clear the port. Once I’ve learned to do this they can “sign me off” as capable for any medical/insurance reasons if/when they have left my house.This will be for hydration fluids THEY started for a later unexpected IVIG reactions-NOT for the actual IVIG infusion. In my state a nurse must be present for the whole infusion.
I don’t know about your husband being able to give IV’s by your port (for reactions to IVIG.) Consult your neurologist.

What is it that you need to go to the ER to have done? If you have a home care company then they should be able to handle all of that at home. If you need fluids or pain meds they can leave your port accessed & teach you & your husband how to hook the medication line up to it.

I’ve been through a central line infection with my daughter and it’s SCARY & life threatening. If I were you I would not want anyone other than a nurse to access the port. I am super strict on that sort of thing. Even if your husband is capable, he’s still not a trained professional & he could still forget a step or mess up. Personally I think it’s too much of a risk.

Good luck,
Kelly

I had one put in on Jan 29, 2008 for the prime reason that I receive IVIG every three weeks and to make it easier for blood draws. It has worked out perfectly for me, especially two weeks ago when I dislocated my right hip that I had replacement surgery on in Nov 2007. I again had to have surgery to replace a piece that had broken. It was a godsend not to get stuck again and deal with blown veins etc.

Ron