Elise and I flew to the DC area on Sunday for a visit to NIH on Monday & Tuesday for a pre-apheresis exam and blood test. After watching the Bronco's give up a huge number of points to the Seahawks in the Superbowl Sunday night, we had appointments all day Monday. We met a bunch of different people that work on the transplant team. We also met with the social worker to discuss some of the logistics of temporarily relocating.
There is so much to learn and understand. Being a mathematician doesn't help me understand the process and medications very well - I took high school biology and that's about it. The drug names and uses that are everyday vocabulary to the professionals mean nothing to me. So its really hard to ask good questions. It doesn't help that I've never thought well "on my feet" - I do much better to read, research and then think a bit before I ask questions.
Elise will go through apheresis in a couple weeks to collect her own stem cells. It's the same process the donor will go through. Elise is going through it so that there is a back-up to reboot her immune system if the donor cells don't engraft. Since the process she'll undergo is nonmyeloablative (it won't entirely destroy her bone marrow) I think her system could possibly recover without the backup, but I guess its an added precaution. I'm told that they've never had to revert to the backup at NIH. I'm also told that other transplant centers don't take this added step. But it gives me some peace of mind to know that they're trying to minimize the risk for Elise.
In another week Elise will get 5 days of granulocyte colony-stimulating factor (G-CSF) injections which will migrate her stem cells from her bone marrow to her blood stream. Then they insert a catheter and hook her up to the apheresis machine for about 5 hours to harvest the stem cells. We visited the room where they do the apheresis process and the nurse showed us around. They measured Elise's veins and decided she'll probably need a jugular catheter since the veins in her arms are too small. Placing the catheter is a "simple procedure", but they'll sedate Elise during it. Hopefully they'll collect enough stem cells in one session and then remove the catheter. There's a chance that they'll have to do two sessions, but apparently that's rare/never happened.
I think she's actually looking forward to the G-CSF subcutaneous injections because they want us to stop her current Kineret (anakinra) sub-Q injections 2 days before the G-CSF starts and then hold them through the end of the apheresis process. Kineret is painful to inject: the serum is slightly acidic so it burns for 5-15 minutes after its injected. We're told that G-CSF is just a normal needle stick (no post-injection burning) and Elise doesn't care about needle sticks after having so many.
We also confirmed that Elise will likely lose her hair due to the pre-transplant conditioning protocol. Another interesting thing is that her current allergies might change due to the transplant. She got pretty excited when she found out she might end up not being allergic to cats anymore. But I warned her there could be a downside too (it would be a real bummer if she became allergic to creosote bushes!) I love that she starts to look at the positive side of things after the initial shock: she's already starting to talk about getting her hair cut short before the transplant process starts.
The appointments all occurred on Monday, so on Tuesday we had to wait for the 4:50 pm flight back to CA. We took the shuttle to the airport first thing in the morning, checked our bag for our flight, and then took the Metro to the Smithsonian museum area. Elise likes the Museum of Natural History because they have bugs. She held a giant grasshopper and a hissing cockroach. The butterfly walkthrough enclosure is also free on Tuesdays so we did that. It's nice to do something fun after all the poking, prodding and sitting around on Monday. After that, the trip home was long but uneventful.
So we'll be back to NIH on the week of 18 Feb '14 for the apheresis procedure.
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