Tuesday, April 16, 2002

Transplant update

Well, this is getting to be some serious s**t!

First, what everyone is waiting to hear. There are two HLA types back and they match...each other. But not me. He didn't have the papers (they'd been sent out to be scanned into the computer system) but I have to assume they were Deb and Diane, who are perfect matches for each other. Doug's will presumably be available by the end of the week or by next week at the latest. Dan's should have gotten there by today and be done by about ten days to two weeks from now.

Come on guys, it's up to you!

Now, if one of you guys match, the transplant will be done, not in Denver, but likely in Seattle, but not before the fall, at the earliest. It will take time to thoroughly test me to see if I'm healthy enough to try to withstand the transplant procedure before we set it up. If we end up doing a transplant, the stem cells from the donor will be collected from the circulation, not from digging the cells out of your bones; a much more palatable option.

Now, this is also what I learned today. If we do a transplant, there is about one chance in four that it will kill me! But if it doesn't kill me, I can live to die of some other disease process (the stroke I've always worried about?) some years later. But I'll be on immunosuppressive drugs, like any other transplant patient, the rest of my life. Which, of course, will make me more susceptible to multiple other diseases.

Geez, I thought it might be simpler than that. Of course, if I don't do anything, the CLL has a 100% mortality rate. We just don't know when it will take me; six years, maybe ten years, maybe a couple of decades.

I've got to decide after the other two HLA typings are completed!

Man, and I thought I might be able to retire some day. I may not live long enough to do that.
If there is no match, chemo is the next option. I may end up at M.D.Anderson in Houston for some new stuff they're trying. There are some short term ( one to two years) studies which show great promise.

In any case, with whatever therapy, I'll probably be in the hospital a month, then have to stay in the area (Seattle or whatever) for a couple of more months. Then, they don't let me go back to work for a year!

I wonder if I'd remember how to deliver babies after an absence of that duration. Or do surgery. Or even pap smears.

To answer a couple of other questions folks had:
1) If, after being HLA typed, you want to be put in the marrow bank, the folks here that are doing the typing (Bonfils Blood Bank) can enter your data into the national registry. 2) There are, to Brian's knowledge, no restrictions on folks who have lived outside the US in terms of marrow donation, but it may vary from bank to bank. 3) If there is no sibling match, they will not look at unrelated donors as the chance of a match is too unlikely.

So, I have to decide if I want to partake of some potentially lethal therapy for a disease that is not even making me feel ill, for the moment, and may not kill me for a decade or more, in the hopes that I may be cured, but disabled (in terms of being immunocompromised for the rest of my life), or whether I want to wait around to see how long it takes to get sick, hoping some new therapy comes around, knowing that I'll likely be weaker if/when that happens and therefore be a poorer candidate for the therapy! Whew!

If I think of any other stuff from today's discussion, I'll add it in a subsequent note tonight or tomorrow.

So, looking at the worst case scenario, who in the family would like to be the caretaker of all the family pictures? The genealogy files? The Valiant? I'd like to find good homes for the stuff in case I don't make it out of the hospital, and, as you guys all know, I've got a lot of stuff. Seriously, let me know who might be interested in what (no, Kathy will get the 401-K, you guys can't have that!).

That's all the cheery news for now.