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BMT Consult Report
Thursday, August 17th, 2006 09:17 pm This morning we met with the BMT specialist, Dr. Longo at UW Hospital. It was interesting, disturbing, bracing...
So out of 6 possible hits from the donor bank, 5 were a total no-go. The remaining one, #3, is a match in 7 out of 8 criteria or "locations." The A, B and DR locations all match perfectly, but the C location only matches by half. (I have no idea what this means medically or scientifically, I just know they'd prefer 8 of 8 to match). The problem with this type of mismatch is that there will definitely be Graft vs. Host complications. An 8/8 match will have a possiblity of no G v. H. If the G v. H is severe (that's a big, important IF), there's a 50-50 chance that it will be fatal. For the 8/8 match, the odds are better, only 30% risk of mortality. Of course, not proceeding is 100% fatal, eventually (within a couple of years). Heh. Life is 100% fatal eventually.
Anyway. For a second opinion, we're going to be checking with the U of Minnesota Hospital. They're doing interesting things with cord blood. No one cord donation produces enough stem cells for an adult transplant, but because cord stem cells are so immature, they don't have to be perfectly matched either. Only 4 major locations have to match up, and UM is doing this thing where they combine 2 or 3 cord donations into one transplant. The recipient takes much longer to develop a new immune system, and apparently, over time, one of the donor parts will establish dominance in the recipient's body, and the other two will fade away. So recovery from this experimental procedure will take at least twice as long - up to 2 years. And that's assuming our insurance would be willing to pay for it.
From the research we've been doing already, we believed that B would be in the hospital for a minimum of 100 days before coming home to near exclusion for at least another 3 months. Today, we learned that if we go with the UW procedure, the hospital stay would only be 5 weeks (plus the 3 months at home still). And, UW doesn't need us to provide a full time caregiver during the hospital stay. If we go to UM, we're back to the 3 in and 3 out scenario, plus it's 5 hours away from home. If he goes to UW, he'd be in by Oct. 1 and out before Thanksgiving. We've got no idea when he'd go in at UM.
We got to tour the unit today, and yes, it's definitely a hospital, but they've done a lot to make it comfortable for a longer stay. B can totally bring in a laptop, and all the TVs have DVD players, and there are nice gathering rooms with windows and views. If you're not totally sick, you're encouraged to leave your room (but not the wing). Bridgett Flynn, the coordinator who gave us the tour was wonderful. We didn't have an appointment to see her today, but she dropped everything to spend time with us. Dr. Longo sent her in at the end of the consult to bring us some info, and she offered to sit with us and answer questions. Once we had our chat, she offered the tour. The appointment was at 10:00, we didn't leave until 12. My mom will be happy to know we got a copy of B's DNA work for her geneaology project.
After that, we went to World Buffet on South Towne for lunch. That's a pretty good buffet. Came home, napped on the couch, continued the conversation and the processing. That's where we are now - processing. Tomorrow, he'll go in for labs in the morning, and we'll probably snag a minute with Dr. Hei even though it isn't our week to have a consult. B will probably also need a transfusion this weekend, and that always brings Dr. Hei by for a chat. So we'll get his opinion too.
I guess I'm looking for input here. I've never been shy about asking people to weigh in. I know I never consider all aspects of a situation on my own. I need other POVs to make good decisions, and I go looking for them.
So that's the update from my side.
So out of 6 possible hits from the donor bank, 5 were a total no-go. The remaining one, #3, is a match in 7 out of 8 criteria or "locations." The A, B and DR locations all match perfectly, but the C location only matches by half. (I have no idea what this means medically or scientifically, I just know they'd prefer 8 of 8 to match). The problem with this type of mismatch is that there will definitely be Graft vs. Host complications. An 8/8 match will have a possiblity of no G v. H. If the G v. H is severe (that's a big, important IF), there's a 50-50 chance that it will be fatal. For the 8/8 match, the odds are better, only 30% risk of mortality. Of course, not proceeding is 100% fatal, eventually (within a couple of years). Heh. Life is 100% fatal eventually.
Anyway. For a second opinion, we're going to be checking with the U of Minnesota Hospital. They're doing interesting things with cord blood. No one cord donation produces enough stem cells for an adult transplant, but because cord stem cells are so immature, they don't have to be perfectly matched either. Only 4 major locations have to match up, and UM is doing this thing where they combine 2 or 3 cord donations into one transplant. The recipient takes much longer to develop a new immune system, and apparently, over time, one of the donor parts will establish dominance in the recipient's body, and the other two will fade away. So recovery from this experimental procedure will take at least twice as long - up to 2 years. And that's assuming our insurance would be willing to pay for it.
From the research we've been doing already, we believed that B would be in the hospital for a minimum of 100 days before coming home to near exclusion for at least another 3 months. Today, we learned that if we go with the UW procedure, the hospital stay would only be 5 weeks (plus the 3 months at home still). And, UW doesn't need us to provide a full time caregiver during the hospital stay. If we go to UM, we're back to the 3 in and 3 out scenario, plus it's 5 hours away from home. If he goes to UW, he'd be in by Oct. 1 and out before Thanksgiving. We've got no idea when he'd go in at UM.
We got to tour the unit today, and yes, it's definitely a hospital, but they've done a lot to make it comfortable for a longer stay. B can totally bring in a laptop, and all the TVs have DVD players, and there are nice gathering rooms with windows and views. If you're not totally sick, you're encouraged to leave your room (but not the wing). Bridgett Flynn, the coordinator who gave us the tour was wonderful. We didn't have an appointment to see her today, but she dropped everything to spend time with us. Dr. Longo sent her in at the end of the consult to bring us some info, and she offered to sit with us and answer questions. Once we had our chat, she offered the tour. The appointment was at 10:00, we didn't leave until 12. My mom will be happy to know we got a copy of B's DNA work for her geneaology project.
After that, we went to World Buffet on South Towne for lunch. That's a pretty good buffet. Came home, napped on the couch, continued the conversation and the processing. That's where we are now - processing. Tomorrow, he'll go in for labs in the morning, and we'll probably snag a minute with Dr. Hei even though it isn't our week to have a consult. B will probably also need a transfusion this weekend, and that always brings Dr. Hei by for a chat. So we'll get his opinion too.
I guess I'm looking for input here. I've never been shy about asking people to weigh in. I know I never consider all aspects of a situation on my own. I need other POVs to make good decisions, and I go looking for them.
So that's the update from my side.
