as small as a world and as large as alone

2:05am April 18, 2015

So those three bumps you can see between my pointer and middle finger tips, are the bumps they use to tell where my port is so they can access it.  One of the bumps is very prominent no matter what, but I had to pull on the skin s a bit so you could see the other parts.

I’ve had a few small complications with this port.  Namely, it’s a little harder to access than it should be because of something about the way they put it in the location, or something.

But even so, I would far rather have this port than not have it.  I was telling an IV nurse how wonderful it was, and she asked my permission to tell my story to patients who might be getting a port.  Of course I said yes!

Basically…

For years and years, I’ve been in the hospital more often than I ought to be.  Less often than some people I know on tumblr, but still way more often than most people are.  I have a lot of very complicated medical problems that have only come to light over multiple hospitalizations, some of which I’m told I was lucky to survive.

(Yes, that means you, Mr. Hospitalist who said “You came in for pneumonia, so I’m only treating the pneumonia” when other people suggested that maybe I belonged in the ICU.  Later we realized I was probably dealing with adrenal and myasthenia crises at the same time, and got very lucky indeed.  And the pneumonia was caused by the gastroparesis, which was only diagnosed later in a five-week stay where I was delirious the entire time.)

But back to the need for a port.

The more I was in the hospital, the more IVs they had to make.  The more IVs they made, the faster they infiltrated.  An infiltrated IV is when the IV catheter get dislodged and stuff leaks into the surrounding tissue.  This happens to me within 1-4 hours of getting an IV.  It’s very painful.  I can always tell when it’s going to happen, but nurses always tell me I’m just “sensitive”, so they don’t order the IV nurses to come and replace it until it’s too far gone to put meds through anymore, and by that time extremely painful.

Sometimes they gave me a PICC line, which is where they dig down into your arm (or other place) until they find a very deep vein, then they follow that deep vein to your heart.  I had blood clots as a complication of this, and yet it was still far better than an IV.  It was very painful getting it put in, though, because I under-react to local anesthetics.

The very last straw was a hospital stay last year for meningitis.  They ran out of good locations for IV sites, so someone tried to put an IV in my finger, and then they tried to push vancomycin (which requires a thick vein, not a finger vein) through the finger vein.  The IV nurse was so angry that she took all the IVs out and said that she wasn’t allowing anyone to torture me anymore.

When I came home…

I guess I’ll back up and say that nearly every hospitalization, multiple IV nurses recommended a port or demanded to know why I didn’t have a port yet.  It was just logical to them that I was a prime candidate for a port, and they didn’t understand why I didn’t have one.

I didn’t have one because my GP is very conservative medically.  He does not like to do surgeries, give meds, etc. unless he has to. My body has pushed him way beyond his comfort zone, though, because so many times I’ve needed something he wasn’t comfortable with, and he had to recognize that.

So when I got home, he didn’t even let me talk. He just said, “I give in, you need a port, I’ll put in the order.”

A port has some similarities to a PICC line, but it’s more permanent.  It’s basically a little thing that resides underneath the skin, and is connected through a vein to your heart.  In my case, it’s under the skin near my chest, it goes through the jugular vein to my heart.  Then when someone needs to access it, they put a certain kind of needle into it, cover the whole thing with a dressing, and after that they can either draw blood from it, or put IV meds into it.

The other cool thing about a port is that you can put more meds into it than you can put into a regular IV.  And I think you can do TPN through a port as well (that’s basically being fed through your veins) although that’s quite dangerous however it’s done and I hope I never need it.  My particular port (Bard PowerPort) is specifically designed, additionally, for dye that’s used in CT scans and the like.  Since I get more than my fair share of those, they figured it was a good idea to get this port.

The port has been wonderful, especially after they worked out how to access it.  I’ve heard from some people that accessing their port hurts, but it doesn’t hurt me.  It certainly hurts a lot less than all the continued and repeatd poking lo get an IV in.  And then it’s ridiculously simple to put meds, fluids, etc. into it.

I remember when PICC lines gave me panic attacks just to think about it going near my heart – that was when I got my first one.  Now I’ve got a port that’s permanently near my heart and I barely think about it at all.  

I really love having a port because it makes my life in the hospital so much easier.  I do have to get it flushed once a month.  But that isn’t too hard.

I do still have to get blood drawn from my hands sometimes, because there’s a difference between a central blood draw and a peripheral blood draw.  But that isn’t too awful.  Blood draws were always easier for me than IVs anyway, because you only have to get it once.  You don’t have to have it continuously working for hours at a time.

Anyway, I love my port, a lot, because I remember what life was like before and after and there’s no comparison.  It’s so much better now than it used to be.

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