To Port or not to port, that is the question…

    • Anonymous
      December 25, 2010 at 2:36 pm

      I am now scheduled for IVIg every two weeks at our local hospital. Most folks from nurses to doctors have a hard time getting an IV started. The record is 14 tries!!:( Needless to say this add up to two or so hours to the IVIg treatment. It’s been suggested that a port may make thing easier all around. I don’t mind the needles, because I can’t feel them most of the time. It’s just not knowing how long it going to take to get “hooked up” that get to be a pain in the…:rolleyes:

      Has any had experience with a port? What is the down side? Are there any restriction? I don’t expect to do any mountain climbing, but I’m going to try and be as active as I can. [racing snails across the driveway, for example] Is there anything that I need to discuss with the surgeon? Thank you for taking the time to read this.

    • Anonymous
      December 25, 2010 at 8:33 pm

      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.

    • Anonymous
      December 25, 2010 at 8:57 pm

      It’s outpatient surgery, and relatively painless compared to other outpatient surgeries! Sure beats the many attempts to get a good IV catheter in and get stuck to the point where you feel you are scarred. [Actually, you get scarred from each stick, especially with larger IV catheter needles.]
      There IS some maintenace to having a port, as they have to be flushed out every 4-5 weeks, but IF you get infusions-it’s part of it all.
      I learned about ports because of cancer patients who receive chemo thru them. Some get replacement ports over time, others keep going with one…
      With the port, they stick a special catheter into the port and you are good for the #of days you are infused. Also, there has been very little bleeding after the needle is taken out. Do ask for ‘Emla’ cream or other numbing agent for your first dozen needle insertions tho. As it’s always in the one spot. After a while there is enough scarring from the needle insertion that you don’t feel the needle going in later on.
      And, I’ve found the rates can be a bit more consistent in terms of administering IVIG. Where it used to take 3-5 hours for an infusion? It now takes 2-1/2 at the most!
      IF you are having to get that many pokes to get IVIG? It could be easily justified for insurance issues. AND? It could help save your life in an emergency. Hope this helps. Good luck!

    • Anonymous
      December 26, 2010 at 1:26 am

      homeagain, I PM’d you a question about your port. Don’t want to hijack the OP’s thread!


    • Anonymous
      December 26, 2010 at 6:43 pm

      Emily has had a port since she was 4 (almost 5) years old. It has been a lifesaver! I highly recommend it!

      She too is a difficult stick & would require up to 7 attempts per hospital admission. It was insane!

      You can get a return blood flow on a port (usually) so you won’t have to be poked for any blood work. Just have the nurse draw the blood prior to your infusion & you will be good to go.

      There are some restrictions – like you can’t take a shower while accessed or you can’t play soccer, but I think you will be able to live with them.

      Emily has done everything with her port…even jumped off the high dive multiple times this last summer. And she plays baseball. So it doesn’t really impact her life at all.


    • Anonymous
      December 27, 2010 at 1:23 am

      Jim, I had a port inserted and it worked out very well. It was inserted at a hospital—was basically painless and I had mine removed about 8-10 months later. The only drawback was that my husband had to wrap plastic wrap around my upper arm and tape it before my showers. (thankfully, my home care company provided all the tape as a courtesy). Also, I never was given any numbing agents- I did get saline flushes regularly— even though I was told the type of port I had inserted at the Mayo Clinic didn’t require them. Removal of the port was also done at a hospital—That too, was painless. I was getting several I.V.’s each week for SoluMedrol infusions. Plus- multiple blood draws (which they just used the port for). It has risks- talk to your Dr. before deciding what is right for you. For me- it worked out wonderfully.

    • Anonymous
      December 27, 2010 at 2:06 am

      Im on my third one. They last me between 3 to 5 yrs. I got ivig every 2 weeks for about 14 yrs,plus hospitalizations. Got SCT last june and still have my port even though I dont get ivig anymore. Have to flush it once a month if you dont use it. Will keep it until Chicago says it s ok to get rid of it.

      It saves you a lot of headache if you dont have good veins. or good nurses.
      Go for it.

    • Anonymous
      December 27, 2010 at 5:42 am

      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

    • Anonymous
      December 27, 2010 at 12:31 pm

      My thanks to all of you who took time to respond especially during this hectic Christmas season. [funny what materialism has changed this joyful and peaceful remembrance into] After reading all your replies I now have a few questions to ask the surgeon next Wednesday. I need to know how much of a problem coumadin (Sp?) [blood thiner] will be.

      Again, thank you all. I hope and pray the Lord will grant you a blessed and hope filled New Year.

    • Anonymous
      December 27, 2010 at 3:34 pm

      Before having surgery you would need to stop the coumadin. It has a really long half-life and so usually people stop it about 10 days before major surgery. Some people use LMWH shots when stopping coumadin to keep from getting a blood clot as you stop it since this has a short half life and one can stop the LMWH the day before and start back for effective anticoagulation faster while the coumadin builds back up in your body. Being on coumadin makes surgery a tiny bit more risky because it can lead to more bleeding if it is not all out of your system at the time of surgery ( a blood test will check for this) or a little risk of clotting (for the reason that you are taking it). All this can be worked through though.
      WithHope for a cure of these diseases

    • Anonymous
      December 27, 2010 at 6:42 pm

      [QUOTE=Jim C]My thanks to all of you who took time to respond especially during this hectic Christmas season. [funny what materialism has changed this joyful and peaceful remembrance into] After reading all your replies I now have a few questions to ask the surgeon next Wednesday. I need to know how much of a problem coumadin (Sp?) [blood thiner] will be.

      Jim, would you mind posting back after your appt. with the surgeon, and also mention what the plan is for your Coumadin if the port is placed?

      I am in a somewhat similar situation.
      Your thread has been helpful to me also!


    • Anonymous
      December 28, 2010 at 12:45 am

      Jim, I was taking Coumadin when my port was placed in. I was not given any general anesthesia. It was like having an I.V. inserted. It just took a little longer. I was in a lab unit. It was a sterile procedure. Seriously, I would not hesitate to have another inserted.

    • Anonymous
      December 28, 2010 at 1:49 am

      [QUOTE=jeanbell1]Jim, I was taking Coumadin when my port was placed in. I was not given any general anesthesia. It was like having an I.V. inserted. It just took a little longer. I was in a lab unit. It was a sterile procedure. Seriously, I would not hesitate to have another inserted.[/QUOTE]

      Did they have you stop the coumadin before the procedure and restart it, or did you just not take it for the day of the procedure?

      Is your port located in your upper chest area, like most insertions? One thing I am doing is looking into alternative sites for the port. We use several different ones in the hospital and I am not wanting in my upper chest area. My surgeon uses quite a detailed analysis of a person’s life style, etc before deciding on a location. Did you go through that or have options?

    • Anonymous
      January 6, 2011 at 8:27 pm

      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!