In the darkness the trees are full of starlight (henwy) wrote,
In the darkness the trees are full of starlight

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Every new beginning comes from some other beginning's end

In my mind, it is certainly much nicer to end on a high note rather than on a Stout Pig.
-Dave Blood

Went to see another Nephrologist this past Tuesday and it's pretty much a case of 3rd verse, same as the first. There doesn't seem to be anything that can be done as far as treatments or even interventions at this point. It seems clear enough that this guy didn't even feel a followup appointment was necessary. I guess it's not like I really expected anything different but I guess you should check all the bases and he is one of the tops in the field so it's like running out of appeals. Time to face the music. At this stage, full kidney failure is inevitable and the only uncertainty is how long it'll take for the full slide. He did say that my progression is unusual....this process should have taken years but I seem to be barreling down this path to organ failure without any of the other symptoms that should have come along for the ride. It's unusual, but as he put it....'everyone is different'. Lucky me.

Of course, the greatest irony of this is that I haven't felt this good in 15 years. I'm more mobile and with less pain and aches and all the plethora of negative symptoms than at any point I can remember clearly. My trip to Gamehole Con pretty much went without a hitch and I went through a full volunteer shift each day with no issues. In actuality, I ended up doing more hours each day than I was scheduled for, mostly as a player coach but anywhere I could find something useful to occupy myself with. I had been scheduled as Props Assistant whose main job description I was told was to try not to fall asleep while sitting in the dark for 7 hours. Once or twice during that period it would have been my job to hear a call on the radio and then be a gopher, running items to various room DMs or otherwise carrying things about. Frankly, I can't think of many jobs I would be less suited for with 1) my audio processing problems (I fear that radio) and 2) my inability to find my way around in the dark. Chances are good I would have been trying to decipher gibberish while wandering lost, looking for rooms I couldn't find. Jeff suggested that I bump someone at admin desk and take over that role but I couldn't knock someone else out of their position. So basically I just went AWOL more or less. I ended up taking coach shifts in both dungeons and it actually worked out pretty well since they needed the help due to various snafu's and then a very busy Saturday. So if nothing else, I was able to make myself useful.

I ended each night one Thursday and Friday with a run through the last dungeon of the night with Laz, his family, and others who decided to jump in. It was actually a ton of fun and I was surprised I made it through without any problems. Usually, by the end of even a single dungeon run, I'm dragging with aching feet and back and all sorts of other issues but it all went pretty great. There was even an impromptu sing-a-long on Friday as I got to play the Bard and we closed out the dungeon as every NPC, bluehand, and DM pretty much joined the caravan. I got to belt out some Les Miserables with other people and that was a ton of fun.

So back to the kidneys....this nephrologist told me that with how fast my deterioration has been, I should consider putting in an access port now. They basically cause an artifical fistula in the vein, making one segment of it distend and enlarge artificially so it's easy to stab when it comes to hemodialysis. The process takes around 3 months to heal and given how my creatinine is rising, he felt I should get it done now so it's available just in case. He also told me that he doesn't think peritoneal dialysis would be a good option for me. This is the option where you can use the lining of your abdomen to filter your blood and it would be done each night as you slept, It was also the only option for me to not have to be chained to a dialysis machine 3 days a week for 4 hours at a time and made travel, whether it be for conventions or whatever, still a possibility. He said that it seldom works very well for large people and the clearance/cleaning isn't as good making hemo the only real choice. I'd been thinking about this quite a bit even before now but that might have been the final straw....I don't think I'm going to do dialysis.

I know that sounds sort of insane. I mean, when the time comes, it'll either be dialysis or death. I don't know if I'm simply whistling in the dark, as if I could somehow play chicken with fate, or if I'll be able to go through with it in the end, but I don't think it'd be a terrible end to the story. I can't help but even wonder if this is some sort of blessing from an inattentive and very backlogged higher power. It's not like I haven't wished at times for a nice, gentle exit and this might be about as good as it gets. Besides, it might seem sort of ironic but I kind of like the idea of going out on a high note. Things have been various shades of terrible for most of my life and it could be nice to go out on an upswing rather than the reverse. Not that I'm sure things won't start to get pretty crappy in the end when the poisons in the blood start to accumulate, but god knows that I've probably experienced worse. All in all, I might have wished for better but I never really thought it would come about. It could very easily be argued that this is better than anything I had a right to expect.
Tags: death, gamehole con, kidney failure, true dungeon

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