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Old Sat Aug 4, 2007, 12:55 PM
skoopman skoopman is offline
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Join Date: Aug 2006
Location: CA
Posts: 54
Location of BMT center

Hi Jill,

I hope you don't mind me throwing in my two cents here. I understand your frustration with the transplant coordinator. When we were looking for my daughter's match in the registry, the coordinator was great and kept me up to date (I saw her walking by most days my daughter was in clinic) but it seemed unbelievably slow to find the match. It turned out the issue was with the potential donors, not the coordinator. What happened was the donors are contacted, then have to reply if it was a message that was left, then have to make an appointment to go give blood, then have to make an appointment for a physical, etc. All those appointment can take a while if the donor doesn't feel a big time crunch. One of the potential donors for my daughter never did call back to give the first blood sample. I don't know what his story is, but it still bothers me a little bit when I think about it. Anyways, the point I am trying to make is if the coordinator is just a bad communicator, it is possible that things are happening on her end but the donor or donors are being slow.

The other thing I wanted to say was about your question of staying close to home versus moving. I agree with what Ruth said in that you want a BMT center that has experience with MDS. When my daughter needed a BMT we went to Milwaukee from California because there is a dr there who specializes in pediatric AA cases. I am a stay at home mom so didn't have job to worry about, my husband works from home so he was able to work a lot while out there with us, and my mom here in CA took care of my younger son and flew him out several times to visit. It was a hassle but she is doing great and I would make the same decision again. On the other hand I know people who stay close to home because that is where all their support is. Most people can't up and move for 6 months. Keep in mind your dad will need a caregiver with him at all times, especially in the first few months.

I hope you get some good news about a donor soon!
Suzanne
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Mom to Michelle, age 7, SAA 6-1-05, rabbit ATG 6-3-05, MUD BMT 11-11-05
www.carepages.com Page name, Michelle5
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