Well I know everyone is different but I personally would not trade my port for anything! I spent 6 years and so many blown veins and sticks that I could not even tell how many! My home care was being jeopardized because the nurses had no back up when they could not stick me.

I have had my port for almost 5 years and never 1 single problem. I am accessed anywhere from every week to once a month for IVIG at home. It was sore for about a month or so after being put in – but everything hurts for me! Know I don’t even know it is there. I normally put on some lidocaine cream before it is accessed and feel nothing!

I have CIDP and use the port for IVIG but have also used for other illness and infusions.

Hope that helps!

LIsa

As someone who takes care of children with cancer, most of them have a port (portacath) and the rest have an indwelling (tunnelled beneath the skin) central venous line (CVL; Hickman, Broviac, etc). Ports are better for outpatient IV medications. They sit under the skin and you can shower or swim and do almost anything with them when they are not “accessed” (do not have a needle through the skin into them). When there is a needle through the skin into them, one has to be careful about infection (so most places taboo showers or advise occlusive dressing to keep all water away from the site that the needle enters the skin). When accessed with a needle, one also has to be more careful about possibly getting hit over the port (which is why people said they cannot ski or play soccer then). Ports are pretty sturdy, so it would not break them, but the needle getting dislodged from the port would hurt and might cause bleeding or a tear in the skin. The pain part is the reason do to do it and it makes sense to be careful with needles. For IV IgG, you would be expected to get your infusion and then have the needle removed the same day or likely, in maintenance, at most have about two days in a row. Ports can be accessed for a week at a time, but you would likely only need this is you ever needed another IV medication like IV antibiotics, for example.

The downside of ports is that it requires surgery to place the port although this is minor surgery, but any surgery is something to think about with CIDP because body stress can affect disease/manifestations. There is a risk of infection with placing the port (or removing it) since this is surgery through the skin (although the risk is very small). The port site (skin over the port) is typically sore for at least a week after it is placed. EMLA or LMX4 are the numbing creams mentioned and they are great to reduce the pain of a needle being stuck through the skin. We use it for virtually all kids with ports all the time–the only exceptions being those that have had their port for a long time and so the port sites are less sensitive and the kids less scared. Ice over the site is another way to help reduce pain with access through the skin. The second downside of a port is that there is a risk of infection whenever a needle is placed through the skin. This is the same risk as with an IV BUT the difference is that the needle in a port goes into tubing that connects right into large blood vessels–so any infection can be a lot more serious–potentially affecting the port or disseminating through the body in the bloodstream. For this reason, one wants the nurses to be especially careful to wash the site well with betadyne or chloroprep (the latter is what we use now, both are antiseptic washes to clean the skin of bacteria before the port needle is stuck through the skin). The third potential downside is that there is a risk of blood clotting associated with any “foreign body” in the bloodstream. For this reason, the ports are flushed with heparin at least once a month. Blood clotting in the port can stop it from working; blood clotting that extends centrally (toward the heart) can cause swelling of an arm or the face sometimes (rarely) and/or be a reason that the port might have to be taken out.

I do not say downsides at all to discourage you from getting one-ports are great, but just so that you are informed about risks and benefits. If you were someone really at risk of infection (because of a weakened immune system) or really at risk of clotting, you should talk with your doctor because there are additional ways to reduce infection or clotting and the risk/benefit needs to be individualized. BUT getting stuck up to 14 times every two weeks is a real downer and is a lot more risk of infection than being stuck once to access a port.

Although this is long, it is also worth saying that the port access area is typically about the size of a dime in adults (there are smaller ports for children and small adults) and when one is reaccessed, it really is not into the same place. The reason is that whenever one has a needle going through the skin, jiggling or pressure can possibly stretch the hole a tiny bit and so increase the risk of bleeding (out) or infection (in) through this hole. Reaccess through intact skin at a slightly different area (even a millimeter away) helps reduce the risk of infection.

I hope that this helps a little in your decision. I know that you are a tough guy, but getting stuck so many times has to still be a stress (hard on body and mind) as well as a major challenge. Having a port could reduce both. WithHope

I’ve had a port for 6.5 yrs, and it has made a lot of sense for me. I have don’t physically anything I have wanted, though I was not allowed to ski black diamond slopes when accessed. I think having a port is a good option to having easy IV access.

A port looks like a cylindrical disk about the size of a quarter across and about half of this in height. They make pretty small ones. The ones make for adults are a lot bigger and getting one made for a child is a lot more important than the manufacturer. Adult can get double lumen ports. This would be way too big for Selah and you do not need but one lumen. We use “low profile” ports on little children meaning that they are thinner. the port will make a bump under the skin that can be easily felt so that one can find the place to put the needle very easily. Usually they are put on the upper chest in children and under the skin. Medical personel use special needles to go through the skin (after it is well cleaned) and into the port. Typically, we use a numbing cream (LMX4) over the port so that the stick of the needle is minimized. It is a lot better for a young child to have one “stick” than multiple “sticks” and having to search around with a needle near a vein to start an IV.
Usually a pediatric surgeon puts it in. There are few pediatric vascular surgeons at all. You want a pediatric surgeon to do it because Selah is little.

WithHope for a cure of these diseases

Calling for input guys. What kind of port do ya’ll recommend and where do you recommend that it be placed? I assume that a pediatric vacular surgeon would put it in. Thanks ahead of time.

Kelly,
I looked up the Rosewellpark site and got the information on the port. It was very helpful, so I printed it off to take with me to my next doctors appointment. Perhaps he will now agree that there are alternatives to central lines. Thanks for the help.
Fred

Hi,
I have had a port for abt 4.5 yrs… actually, I’m on my second port…

I agree with both of the other posters that a good surgeon and port placement are essential to sucess. Additionally, always accessing with the utmost care to sterile procedure.

Things that have been less sucessful for me, and required the placement of a second port:
1. The first port was put in by a general surgeon. The first port was too large for my body type, I’m a relatively thin person. It was a subclavian placement, which allowed the catheter line to get compressed between my clavicle and subclavian muscle and have line stoppages.
2. The surgeon and infusion co working with my first port insisted that there always be a blood return and to do my routine blood draws through the port. A blood return is NOT necessary to the function of a port. Blood return techniques and blood draws into the cath line create the possibility of fibrin build up at the end of the cath or within the line. Blood in the cath line is very sticky, and can be a place to attact bacteria if sterile proceedures are compromised.
3. I lost my first port due to fibrin build up.

Port #2 has been a jugular placement, which has worked out much better for my anatomy and lifestyle. I learned how to access the port myeslf, and I know if things are working correctly instead of having someone else telling me.
Port#2 has never had a blood draw, or blood return through it. It always flushes easily, and administration of substances into the port have never been a problem.
Port#2 is a “mini” port. It is less visible on the surface of my body than my first port, more stable and easier to get a correct access. It was placed on muscle abt 2 inches below my clavicle, and 2 inches medial to my bra strap making arm and shoulder movements totally comfortable without irritation. It is also a bit lower than the shoulder strap on an auto seat belt.
Another bonus to me, is that when wearing a halter style bathing suit top, the port bump is completely covered.
Port#2 was placed in a larger hospital under x-ray guidance with a local ansethesia by an interventional radiologist. I was also given oral medication for relaxation and fell asleep as soon as the procedure was over. Upon awaking, there was a wonderful ice pack on the site, which went home with me. The ice packing right after and for 24 hrs post surgery as well as the limited medication minimized the side effects of the surgery and I recovered much more easily than after the first round.

I have monthly blood drawns by a wonderful phlibotomist who can find my small peripheral veins with a thin butterfly needle.

I feel like I have blabbed on… I hope my experiences will help you to make the best decsion for you.
Oh, yes, I am very, very grateful for my port… It makes infusions much more comfortable and reduces stress.
Best of luck,
Erin

Linda they can put IVIG through a port. I have a port-a cath. I started with neurological lyme disease and had the port put in for IV antibiotics. After the dx progressed to cidp I chose to leave the port in place because my peripheral veins were very scant.

While my veins have improved significantly since starting IVIG 17 months ago, I still need a good phlibotomist(sp?) to get a blood draw without bruising.