Stem to stern

At about 10a on Friday, the SCCA realized they hadn't scheduled an appointment with me, so they called me as I exited the parking lot from my blood test and said "Can we see you at 2p?"

Whatever! I hope this series of stupid moves doesn't continue beyond this week. I know that a complete change of staff can do that to an organization, but this is out of control.

Regardless, the 2p meeting was interesting. Again, they decided to do nothing and change nothing based on the latest results and my new symptoms. Here are the primary issues:

1) I still have an upper respiratory infection of some sort. No fever, but there's a lot of clear discharge from my nose and throat. All of the assays show I have no infection.

2) I get stunningly short of breath. Walking a block makes me see stars and pant like a marathoner. Breath sounds are normal and X-rays are normal.

3) I bruise at the drop of a hat. It's so bad that I jokingly said, "If I push right here, I'll probably get a bruise." Sure as hell, I had a bruise right there in about 2 hours. Mind you, I'm not on blood thinners and my blood counts have been lower than this in the past. We have no idea what's going on.

So, if you couple these new developments with the results of Wednesday's spelunking expedition. You come up with.......

GVHD from stem to stern. No CMV, just plain old garden variety Graft V Host Disease. The donor cells are trying to kill me.

Now remember, that's not a completely bad thing. We have to have GVHD in order to get Graft V Tumor (GVT). So part of me is saying, "Yipee" and the other part is saying "Please get me off these damned steroids!"

Meanwhile, the SCCA is saying, "We need to get you off the steroids, but we're not going to do anything about it yet." They've been procrastinating for weeks.

Yesterday they said they'd make a decision on Tuesday at the regular clinic meeting. What they don't know is that I'll be making the decision for them. If they decide they're going to do nothing again - make no decisions and make no changes - I'm simply going to tell them I'll be putting myself on a prednisone taper.

That will give them three options. They will have to:

1) Allow their patient to do something that's not in his best interest. (If that's their belief.)
2) Offer a suitable taper schedule because they might as well control the inevitable.
3) Have a serious conversation amongst themselves about what to change.

I might not have the best poker hand at the table, but I'm not scared of a good bluff.