I am getting a port ‘installed’…..

    • Anonymous
      November 7, 2009 at 10:03 pm

      IN less than two weeks? After 5 years of ‘sticking’ there’s little left to get into w/o hitting scar tissues.
      Does anyone have advice for me about this all? Such as when should my next IVIG be scheduled and all that?
      I’ve considered sub-que, and nixed that…as I HATE NEEDLES! I scrunch my eyes shut or I’d keel over passed-out watching a needle go in me….. I’ve been that way all my life. Doing it to myself? NO WAY NO HOW.
      Other CIDP, MMN and Cancer folks w/ports I’ve met in the past have loved them….and I’ve an experienced nurse to do the infusions… So port it is?
      I just want to know what to expect, especially as I’m going thru intensive PT to recover from a leg injury and am re-learning to walk again after several months of not being able to put weight on my leg… not to mention the overall muscle loss that goes with that. I want to do both, but not mess up either one.
      Any help is appreciated THANKS in advance !

    • Anonymous
      November 8, 2009 at 4:18 am

      I think you will like having the port. It is easier to use if needles are scarey because it is one spot to hit and so getting an IV started is usually not an exploration and digging exercise any more. I have several suggestions from working with lots of children with ports. First, regarding timing–it seems to help the kids with autoimmune processes to get immunoglobulin close to the time before the surgery so that they go into the surgery in the best state possible. We try to do surgery within a week or ten days of an infusion if they are on monthly infusions. Also the port with be tender (bruised feeling) for about a week after it is placed and so this allows it to heal before the timing of the next infusion. Since you do not like needles, ask for LMX4 cream with lidocaine the first few times the port is accessed. this numbs the skin. Also have an experienced nurse do the accessing the first few times. The first time is the hardest because there can be a little swelling in the tissue (usually gone a week after the surgery) and because you will not know what to expect.

      Usually the soreness of having the port placed is much better after three days. In the first three days, your shoulder and arm can be somewhat limited because this moves the upper chest on the side where the port is placed. You should still be able to do leg exercises, but you might not be able to “assist” with the arm on the side of the port for these first days–so make sure that PT knows that that shoulder/arm may need a mini-vacation to heal and the legs will have to have appropriate “isolated” exercises. Port in kids are more likely put on the left side of the chest.

      Ports are a tiny bit more challenging in ladies than in men or kids because ladies have more tissue in the upper chest–some more than others. (No censured words in that!). You want the port to be placed so that you can still wear clothes you like with the cleavage that you like, but would want the port to have a solid place behind it so that it does not turn or move in the tissue that makes it harder to find and access. You also want to be comfortable wearing the underclothes that you like to wear. This is more an issue for full-figured women and I say it in case you are because then it is important that the port be placed where access is readily obtained but it is not in the way of wearing supportive and pretty clothes. I hope that I said that clearly enough in trying not to embarass anyone.
      WithHope for a cure of these diseases.

    • Anonymous
      November 8, 2009 at 10:18 am

      I hope that I did not say anything sensitive regarding your past other medical concerns in the previous reply. I had forgotten that there were past concerns. Stay strong. WithHope

    • Anonymous
      November 8, 2009 at 4:17 pm

      Emily has had her port for 3 years & it’s starting to act up. We’re looking at replacing it anytime now. We don’t get a blood return anymore but it’s still infusing so we’re sticking with it for awhile. Apparently 3 years with a port for a little kid is a very good amount of time.

      That being said…

      The port has been a lifesaver for us. Emily was 4 (a few weeks away from turning 5) when she had it put it. 2 days after surgery she felt well enough to go to the Renaissance Festival. It seems to be a fairly easy procedure to recover from.

      I do have a few bits of advice for you. Try to schedule an IVIG treatment for right (a day or two) after your surgery. That way the dr can leave the port accessed when he puts it in. We were going to do this with Emily but the dr only had tegaderm’s available to cover it & Emily is allergic to them.

      Also, I think having a treatment right after surgery will help with the possibility of relapse due to surgery/anesthesia. There is evidence that either the surgery or anesthesia may cause a relapse in some people.

      The port will be tender & swollen for maybe a week after the surgery. For the first few days you’ll probably want to take a pain reliever pretty regularly.

      Ask for EMLA cream for accesses. We use it on Emily & it numbs the skin over the port. She doesn’t feel a thing other than a little bit of pressure. She does say sometimes she can taste the saline when the port is being flushed.

      If you don’t like needles make sure to turn your head or hold something up over your face so you can’t see the nurse access you.

      You will have stitches above the port & in your neck. Ask to have dissolvable stitches, that way you won’t have to go back to have them removed.

      That’s all I can think of right now. Dawn might reply to this – Kevin just had a new port put in over the summer. I’m sure she remembers much more than I do.


    • November 8, 2009 at 6:36 pm

      Hi Kevie did just have a new port. They put in a purple one I will try to remember the name later. The doc chose this one for a couple of reasons, first, it has three palpatation points for easier location and apparently the target area of this brand is the largest. It also has an advantage for contrast dyes, as it rapidly infuses contrast dyes for mris and cat scans. Also, if you are a little Pam Anderson up there, if you don’t wear any bikinis or mind a bump showing, you might ask that they not put it too deep. That was a problem we had with the first port. I would highly recommend that you ask the doc to leave it accessed provided you can schedule the surgery close to infussion. It is very tender and swollen for a few days. The first port that kevin had was very swollen even a week after, we had treatment on day 8 and the nurse had trouble, we had to go to the surgeon and it took him 4 tries. Leaving you accessed will aleviate all that worry. this next bit of advice is purely our opinion, but just giving you what worked great for us. i was apprehensive about general regarding autoimmune issues and all, so I asked if local and twighlight could be done. Coincidentally a neuro anestheaseoligist overheard me asking the regular anesth. and she interjected saying that she treats MS patients and ALWAYS does twilight/local when possible. She spoke with Kevin and felt that he was mature enough to handle it. I have had it too, much easier than waking up from general. Kevin was a whole different child with general. With the twighlight, when we came back to recovery he was joking w/the nurses and drinking apple juice. I assure you that DID NOT happen with general:D 😀
      As mentioned above, make sure you have emla for future accesses. Also, when you apply the cream, buy glad press and seal and put it on top of the cream to hold it in place instead of a tegaderm. It does not hurt or exfoliate or irritate the same way as tegaderm. It will be especially helpful right after surgery while the wound is healing. Something else i asked the surgeon was when he accessed Kev, I asked him to put a piece of gauze on top of the needle and tottally covering the incision so that when the needle was taken out and the tegaderm removed, it would not tug at the insicion. I will try to think of other things. PM if you like.
      Dawn Kevies mom BTW, Kevin’s swelling lasted for about a month, for the first couple of times you may want them to use a longer needle than the protocol 3/4 inch. You may be fine, Kevin was not exactly sittling still for recovery, bike riding and airsoft wars don’t exactly help.

    • Anonymous
      November 8, 2009 at 9:17 pm

      WH? Nothing was received as negative in your reply AT ALL!

      Yes I do have other immune issues and my neuro, who’s been in and up to date on all of them is the one ordering a ‘long term IVIG port’.
      I guess that my IVIG scheduled for 6 days after the port placement is good enuf? Had my last infusions at the very end of Oct. I had trouble training the ‘neuro’s nurse’ about the procedures tho….I KNEW there were windows of timing in which this all should be done… sure hope I’ve got it right? I suspect that my neuro…had to go and do a little ‘refresher of the memory banks’ himself too.
      Lastly, a silly but not so silly question? I’ve had a mastectomy LB for BC and would they put the port on that side? Couldn’t that cause lymphedema problems? I’ll have to ask, I suppose once I get there. It’s important to know as I’m right-handed and have been relying heavily on that side..to get me around and DO things while re-learning to walk! It is getting very complicated? :rolleyes:
      LMX4 Cream, Is that the EMLA cream? My IV nurse is well familiar with it and expects it to be used….I’ve just got to remember to get the prescript filled before I start my new Insurance Calendar deducible year! I understand this stuff is dear cost-wise!
      Dawn – Thank you for that Anathes./MS reference! That is something I’ve been aware of for ages, and some folks [docs, anathesiologists and others] do NOT respect it enough Unless you mention that ugly DEMEYELINATION word! That plus the fact one can actually spell it out? I feel more than ready to start swinging my cane to get thru to dense brains otherwise. I for one, am grateful for all the research MS folks have done in this area-work that WE benefit from!
      I [I][B]THINK[B][I][/I][/B][/B][/I] I’ve got all my ducks in line? Tomorrow I’m calling the Insurance Co about being sure I’m ‘pre-approved’. These days? Don’t want ANY more surprises! I don’t think I’ll be in that hyper state of pre-panic until the nite before…. The only time I wasn’t? Was this summer w/my leg surgery – too knocked out on morpheine! I hurt then, but, simply didn’t care! 🙂 ?
      Thank you both for your sound and wise advice. I am eternally grateful!

    • Anonymous
      November 9, 2009 at 1:11 am

      My IVIG nurses are trying to talk me into a port as well.

      Right now I have IVIG every month so I don’t really mind the needle in my hand but they are having trouble finding a spot to put the IV into.

      Guess I ‘ll have to revisit this.

      I hope the insurance company pre-approves you and you have no “surprises”.

      Thanks for sharing,

      Rhonda from Canada

    • Anonymous
      November 9, 2009 at 3:04 am

      My surgeon drew a line 2 inches above my bra in his office so that way the port wouldn’t rub against it. He said when ladies are on the surgery table its hard to figure out where the right area is cause we’re not wearing anything to give him the best location indicator. I kept re-doing the black marker line myself after a few pre-surgery showers so it’d be there for that day and very visible.

      One thing I found that REALLY helped is having a simple non-under wire sleep/sport bra with hooks in the back (NO pull over the head bra”’) to keep on 24/7 for 4 or so days.This kept the whole area from moving/laying on side in bed.I put small bags of ice in the bra cup and it helped relieve the swelling/pain. Took several months for scar tissue to grow around area and secure the port.My port is very visible-small bump protruding from the surface. The nurses said one of the best they ever accessed.

      When my port is being accessed I pull my shoulders back to arch out the port for easier IV insertion.We’re using a new type of tiny white gauze cover over the area when infusing instead of tagerderm. Some nurses put a little bit of gauze over the needle under the plastic cover to protect against any bumps/overnight wearing. Mine has a bright robin egg blue rubber end and it can show when out-people sorta look and those in the know have even asked if I’m having chemo.

      I have general anesthesia for the surgery. My ride and I went out to dinner later but by that late night I was hurting and glad I had strong pain meds here for that.Some folks on this Forum said having a port put in felt like being kicked by a mule-some didn’t feel much at all.
      Just be careful of lifting/moving anything heavy for a few months. I couldn’t bring in the 10 pound bag of cat litter and had to remind myself not to strain physically.As with any surgery have what you need ready/in order/groceries.

      I got a BARD (right side) port since July 2006 and I love it. I do notice the port when I’m laying on my right side as its titanium. I push a small pillow underneath that breast area.
      Best of luck.

    • Anonymous
      November 10, 2009 at 4:47 pm

      I’ve had my port since Sept 2007 and its still going strong. I would advise them for anyone….I only needed Tylenol after my procedure so again just like everything we are all different. I had breast cancer (actually the reason for my port but they put it in on the opposite side of the cancer.) Mine sits right under my bra strap so it isn’t visible unless my bra is so that has worked out well for me. I would think if per chance your infusion happens to go sub q it wouldn’t be advisable to have it on the mastectomy side where you have no lymph nodes to help with the reabsorption of fluid. The last thing you want out of this is lymphodema too That’s just my opinion. I never used the Emla cream after my first infusion as I didn’t feel it was worth the time to do it. The insertion for my infusions and lab draws has fortunately only been one poke and its much less than starting an IV in regards to the sensation….again this is just my experience. Mine was also put in without a general anesthesia…same day procedure. I had it accessed after 5 days. My opinion is they are the way to go if you get frequent infusions. If you don’t get an infusion approximately once a month they do have to be flushed and heparnized at least monthly. At least that is the recommendation from my manufacturer. The only other advice is that I hope your surgeon stitches it in place. I have heard of 2 folks ports “flipping” due to their arm movements and then the little rubber stopper side is down when they attempt to insert the needle and its impossible to access once this happens, the backs of the ports are metal so it requires another procedure to flip them back over. I hope your procedure goes well. Take care,

    • Anonymous
      November 10, 2009 at 8:41 pm

      The better prepared I’ll be for ‘this’!
      I am looking forward to it in a way? As my arms get and stay sore for 2-3 weeks after an infusion…at the catheter point. Worse yet? My skin’s gotten so thin that when the catheter is taped on to me? Skin layers come off w/the tape. Not fun at all! It takes about 3+ weeks for the skin to heal….then another round. I also suspect that I might be sensitive to some of the tapes and patches used in adhering the catheters, as sometimes I get a rash from them. I don’t think I’ll miss that!
      I pretty much nixed the sub-que after talking long and hard w/my IV nurse…she’s had folks who’ve loved it? But many more who didn’t–tho she did say that since you get it and do it weekly you wouldn’t have too many of those ‘peaks & valleys’ we get in-between. I got the impression that about 60-70% drop using it after six months or so. For ME? It’s the whole needle phobia thing. And, I’ve used it on my pets and livestock when necessary…but only with a lot of shaking-quaking-deep breathing and a few prayers! For the sake of the critters.
      Limecat? Fortunately I’ve not felt the need to wear underwiring! Sports-soft attire is my preference. And, my cancer docs [surgeon, plastic surgeon and oncologist] all approve of my choices, so I’m good there.
      Jan & Limecat – I was afraid you’d say this! As it’s been my RIGHT side that’s gotten me around in relearning how to walk and just MOVE following extensive leg surgery. Plus, I’m going to have to work in a LOT of PT in walking just to get around! I do not like wheelchairs and I’m not too steady in the walker as I’d like to be! But, I DON’t Want Lymphodema either! Definitely. I’d had the bc surgery on my left side… ergo – worries?
      I do know about caution lifting tho…I’d had cataract surgery ages ago [young for my age at the time?] and lifting more than a loaf of bread for the first week wasn’t allowed! Then I popped two stitches in the eye just talking on the phone! Fortunately no damages done, but believe me-those were teeny tiny stiches…. Looked like dust on the gauze the surgeon showed me…they felt like boulders in that eye before thhey were removed tho!
      Again thank you all! It’s giving me courage to know that my thinking is on an even keel and that I’m going in the best direction for the long term. Scary stuff, all this at first? Not so bad in the long run I am believing.
      Good thoughts and super things to all!

    • November 10, 2009 at 10:38 pm

      Regarding your comment about sensitivity to the patches used on you, there are special patches for people with allergies. BE SURE to tell them this BEFORE surgery, as you will have the tegaderm on for a while. Be sure to tell your nurse to ask for those patches at home for infusion. The press and seal when applying the emla will be one less layer to have to peel!! Honestly, you seem to be adjusting to the idea, I think you will be fine and it will probably be uneventful Kevie played with his friends the same day (xbox) and within a week was running around. We did refrain from vigorous gym activity for a month. Be sure to ask the healthcare company to send you a couple of sizes of needles. Especially for the first time if they do not leave you accessed after surgery. You also will have to flush with salene daily until the infusion. That is what we were told to do, so make sure between now and your surgery you ask the nurse to order a few e3xtra if you are low. See you later.
      Dawn Kevies mom

    • Anonymous
      November 11, 2009 at 11:43 am

      Emily has sensitivity to certain adhesives as well.

      We use a skin protectant on her before any covering is put over her port. You can ask your home care company for them. Ours come in a green & white package & are swabs…there are other kinds out there too. Some are more stinky than others…be forewarned about that. The brand we decided on isn’t stinky (smells slightly like alcohol).

      Emily uses a bandage called Primapore. Apparently it’s used often on people with adhesive issues.