Myasthenia and Ports

decisions

So there is always the option of getting a port catheter for your treatments if you get plasmapharesis. There are pros and cons. I can tell you that you have to decide what will work for you. It all depends on your lifestyle and how your body responds to treatments.

PORTS:

Can be semi-permanent (can stay in for several months). However, the require maintenance by professionals or yourself. They cannot get wet and they need to be re-dressed and flushed weekly. So no swimming or showers… You will need to wrap in saran wrap and/or use a spray handle shower rod. I had to do this for months. The ports work a bit easier in treatments though when they are working properly though because they are a larger access point so the treatments go faster. It’s also a plus when you are tired and need to sleep or rest when tired. But a down side is if you are active and start to sweat you have to change the dressing more often and clean the wound site more often to prevent infection.

The port is also an eye sore and annoying because it can be seen ‘around’ some of your clothing. If you like to wear tank tops, boat neck tops, or anything off the shoulder forget it because you can see the bandages. You also have issues with the tubes slipping out of the bra area. I tried to wrap them in gauze and tuck them so they didn’t swing and annoy me when I had one. I also hated the port because when I exercised and did front lying things it was uncomfortable to the point of pain some days and I teach fitness classes so I was just too active for that thing. LOL.

NEEDLE STICKS:

Needle sticks are tough to deal with but if you can muster them it may do wonders for you. There are several down sides with this method as well too; however, this is the method that I prefer. You cannot move your arms in this method because you have 1 inch steel needles in your BOTH antecubital (front of the elbows) simultaneously like you are giving blood. Then you are have to squeeze a little stress ball the whole time which sucks if you are fatigued too much with your MG symptoms (no sleeping or resting there because the machine will cut off). The needle sticks can run almost as fast as when you have a port but it depends on the quality of your veins and your hydration levels. If you veins are bad the you should stick to port because otherwise a 90-120 minute port treatment could turn into a 3-6 hour needle stick. You and the nurses will dread your appointment. In addition, after your sessions you may have some bruising sometimes at the stick site. Just like when giving blood you get wrapped up and then in a few hour take the bandages off depending on if you are blood thinners and the gauges of your needles (i use 16 so I leave mine on for 3 hours) then put on band aids. That night I free myself of all wrap and band aids and I’m free to go and you can go on about regular hygienic care at any point in the day.

With both you will have scarring as with anything that cuts into the skin. So choose wisely if you have a choice. When you are in the hospital you may not always have much choice as they will give you what is best so they can get the best access and the least amount of resistance and give you the best rest. You may not want it but it will be what it best saying this leads into…

CENTRAL LINE PORTS

I have had several of these and they are like tunnel ports that I spoke of early but they are VERY temporary and go in the jugular and stick out of the same area. The different between that and the first one I spoke of is that the other is tunneled, goes in the jugular and sticks out of the chest about 2 inches under the clavicle. Everything I mentioned earlier is true of this model as well, except when you are discharged from the hospital they take this one out.

I have gained a healthy or rather UNHEALTHY phobia of neck surgeries, strangulation, and lying on my back AWAKE for surgery thanks to this particular procedure! I have several scars up the right side of my neck and anxiety galore from the mere mention of needing a port, central line, or neck related surgery. be warned though it is quick if you are in crisis or at a learning hospital it will do a number on you (I will just leave you with that thought). Since then I go to my preferred hospital and they give me anxiety meds and I at 30 years old take my stuffed animal that looks like my dog and endure. Laugh if you must because I do often but I do not care, it gets me through that trying moment when I wish I could black out at will, LOL.

Choose Well!

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