Friday, February 13, 2015

Bob's state of the port photos

I haven't done a personal check-in for quite a while. There's lots to report (like, about two years' worth) but I've been too busy to do it. However, I have a few photographs here that I'll share about the recent goings-on with my Lyme disease and Parkinson's treatments.

You may recall that my last port got infected, I got infected blood (sepsis), and had it removed. I have the whole removal surgery on video (thanks to my friend Marlene who is a filmmaker and doesn't sky away from grossnitude nor blood). But even I haven't watched it yet because I know the surgeon was hacking around in there for about 20 minutes, trying to free up the darned port from all the connective tissue that had grown around and into it.

Anyway, here's what my new port looks like now. Seems to be in pretty good shape. I am using minimal bandaging. Where the line goes over the top of the clavicle it seems to bruise, so the skin is a little bit yellow there. Sometimes it hurts at that spot. That can happen if I wear a heavy coat or jacket with my phone in the pocket, applying pressure at that spot.

This port seems to be working fine, no clogs for the last two or three weeks since it was installed. I didn't want a double lumen I wanted to the single, so that's kind of annoying to have the extra gadget there that is not necessary. I use the red one mostly and leave the purple one alone although I do have to flush it occasionally and put heparin in it so blood will not clot inside the line. I am much preferring this kind of port to the Porta calf that I had last time. Even though it's a hassle to have it always hanging off of my chest, I didn't like using the kind of port where I had to impale myself with a needle in order to access it. With this one there's no pain ever, and although I can't go swimming, and have to be careful in the shower, it's worth the extra hassle.

The bottom two photographs are of the two "punch biopsy" samples that were taken by Dr. Silva (neurologist) a couple of days ago to determine nerve fiber density. Although a local anesthetic was used, taking the samples really hurt! Think cookie cutter. Or imagine a pencil with an eraser. The eraser held in by a metal thingy. You know, your basic #2 pencil. Pull out the eraser and you've got pretty much what this tool looks like. The doctor rotates it while pushing against the skin, and it cuts a round hole. Then he removed the tool slowly and it pulled some flesh with it. Then he cut that off with a scalpel or scissors (not sure which, as I wasn't looking). 

Just above the left, outside ankle. Hmm. This photo looks upside down. That's my foot at the top of the photo.

They seem to be healing well. The doc said it would fill in and look fine, though a little white, due to lack of melanin.

I don't have the results yet. If the results are positive, this will help me to procure IVIG (intravenous immunoglobulin) at a reasonable price. IVIG should help on the immune system front and perhaps assist the body begin to naturally fight off and reduce the bacterial and viral load that tests indicate are present.

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