AnonymousJune 6, 2008 at 5:29 pm
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. 🙂
AnonymousJune 7, 2008 at 4:30 am
You have my sympthies for having myasthenia gravis!!! Do you take mestinon and/or Cellcept along with the IVIg? For awhile they thought I had MG as well due to the bilateral facial drooping but the single fiber nerve test ruled that out. Anyway, you might want to post your question in the Main Forum as most people head there. I don’t have a port but for awhile there my veins were super-irritated from monthly IVIg infusions. We were leaving the needles in over night and by the second or third day my arms were killing me. We stopped doing that, we take it out every day now, and I’ve had no more problems – no more inflammed veins, no more veins shutting down or blowing out. I know there are several kids who have ports so if you post on the main forum I’m sure someone will answer.
AnonymousJune 7, 2008 at 9:47 am
I have a port a cath and I love it. I didn’t have good veins anymore so it is the answer to my IV prayers! 🙂 I don’t think it sticks out or gets in the way of the “old bra strap” They can be placed on either side. As soon as it heals you can do whatever you like. Its just the insertion incision that has to heal. The port itself is ready for use once its inserted. The only thing to remember is it must be flushed at least once every month with heparin to keep it open. There aren’t any restrictions to movement that I know of. A friend of mine also had a port and her surgeon didn’t suture it down and hers flipped over. When they went to use it the rubber part was upside down and the metal was on top so they had to flip it over under her skin but I asked my infusion nurses and they said they never had a patient have that issue and they had never heard of it happening. Another positive is that they can draw your labs thru it as well. The only issue with this is that it has to be a nurse that does it not a phlebotomist. They need to know how to flush it properly. I have had mine since last August and it works great. They are supposed to last at least 5 years. My Dr. prescribed a numbing cream to be put on before the port is accessed but I don’t even use it as its just a little poke when they stick the needle in. It hurts less than an IV start. Hope this gives you some reassurrance. If you have any more questions feel free to ask. I say go for it!
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