Monthly Archives: September 2014

Sailed through

They did the procedure this morning, I’m back home. They found dilated ducts, but…no stone. And my liver enzymes were back to near-normal this morning, suggesting that I may have passed it sometime in the last few days without noticing. Guess there’s some advantages to my long-standing policy of staying in a drunken stupor… 🙂

Back on my back

Well, actually, I’ll be flipped over on my front, kind of suspended from the table, for surgery in the morning – an endoscopic procedure to find and remove a blockage in the bile ducts near my liver. It’s normally an outpatient procedure, but the hospital may hang on to me for a day or two just for observation since I’ve got a more complicated profile than most people. smile All expectations are that it’ll go smoothly, however.

That’ll pave the way for treating the more serious problem, the FSGS infection that’s damaging my one working kidney. The liver blockage needs to be dealt with so that in a couple of weeks they can start hammering me with heavy doses of steroids. Now, I’ve been on low doses of steroids as an immunosuppressant for 20 years, with a number of odd long-term side effects – steroids are powerful, and very odd, drugs. But a concentrated dose like this is a whole ‘nuther matter. Hopefully I can tolerate them without too much trouble (eg, getting very sick, having severe hallucinations, and other various strange risks). We’ll see. My hope is to be able to recover from tomorrow’s procedure quickly enough to have a couple weeks’ window to line up housing. That would be a huge relief.

On that score, many thanks to the folks who’ve PM’ed or left messages with suggestions. We’re following up as best as we can between the medical traumas. It’s been that kind of month. October’s gonna be better, though, right?

Oh, and: I love the rain!

An update on me

I’ve been AWOL posting on this blog – as well as not in very good contact with a lot of my friends over the past month – due to some pretty serious new developments in my health. So I thought I would use this space to bring anyone interested up to speed, and also to ask for some help.

As some of you know, I’ve been living on borrowed time for a very long time. I’ll skip the gruesome details, but I had a then-experimental kidney-pancreas transplant in 1994, and the transplanted organs have lasted much longer, with a much better qualify of life, than I or anyone else could have imagined. There’ve been plenty of complications along the way, but over the past 20 years I’ve led a remarkably active, ambulatory life, all things considered.

For the last year, however, my health has been trending downward. And a biopsy two weeks ago uncovered not only significant damage to my transplanted kidney, irreversible and apparently progressing, but also an infection, called FSGS, which itself could lead to kidney failure.

On top of it, I’ve had an apparent liver infection as well, and will have a minor procedure next week that will remove a blockage in a bile duct (it’d be a gall stone, if I had a gall bladder – that’s one of the complications I mentioned above, it came out some years ago). They have to do that in order to start giving me a steroid treatment for the FSGS infection. Which may or may not work.

It’s unclear how much of the ongoing kidney damage is due to the FSGS (perhaps reversible) and how much is just long-term wear on a transplanted organ (not reversible). Regardless, I expect I’ll almost certainly be listed for another transplant soon, perhaps by year’s end. The current wait time for a new organ is 3-4 years, so the likeliest scenario is that I’ll be in a race against time between kidney failure and needing dialysis – which I’d likely do very poorly with – and getting the new spare part. Or, I could stabilize and be OK for however many more years – there’s an outside chance of that, too.

Short version: I have to treat this as life-threatening. Survivable, I think, but it won’t be easy. And I’ll need your help.

The change in my health prognosis has forced a number of other life changes. Most significantly, as Facebook friends know, last week I got engaged to Revel Smith. It wasn’t something we had exactly been planning on doing this month – I’m sure the suddenness surprised some of our friends – but we trust each other completely, and committing in this way is a pragmatic move designed to help with health support and to offer us both logistical and legal advantages.

The other immediate change is that the rather nice one-bedroom, second floor apartment I moved into in the U-District just last month isn’t going to work out. Should I become (more) seriously ill it simply isn’t accessible enough, as I’ll need to be living in a place with no significant steps (someplace either at street level or with an elevator).

This is where I could use the most immediate help. I need to find someone who can take over my U-District lease (which runs through August 31, 2015), and I need a reasonably central, accessible place to live, preferably a studio or 1 BR space I can share with Revel. Please leave a comment or contact me privately at geovlp(at)earthlink(dot)net if you have leads on either front.

Otherwise, my spirits are good, and I have a number of projects I’m still wanting to be active with, especially around radio and writing. More on those shortly. I’m also hoping to use this blog to update people on my personal health issues (as well as the inevitable politics, and fun things as well!). When I went through my health struggles in the early ’90s the Internet didn’t yet seriously exist, and I wasn’t nearly the publicly visible figure I’ve since become. This seems like the simplest way now to both keep friends and well-wishers updated, and to exchange ideas and support with whatever community might emerge. I’ll post brief updates on Facebook, but this format offers (I think) a tad more privacy and space for getting into detail.

Thanks for reading this far, and, again – if you know of a place to live, let me know!