Tuesday, March 10, 2009

Waiting and Aching

As wonderful as it is to be free from IV tubes and all-night prodding, it certainly isn't a panacea.

The platelet roller-coaster continues along its up and down course. When Krista went to bed last night she had medium-sized blood clot and another a few hours later. After all the activity with the transfer, we weren't surprised by it. The clots are due to low platelets, but unless there's other signs of bleeding (which there weren't) it can wait until after the office visit in the afternoon.

Krista woke up in the morning feeling "disconnected" from her body. There was pain all over, especially in her stomach, but somehow it felt like she couldn't "feel" the rest of her body unless touched. Pills and breakfast were forced down, but the strange feeling continued until almost noon, along with a strange nauseous feeling like there was something near her gag-reflex in her throat. It took almost an hour to get ready for our 1:30 pm appointment, but we managed to wheel out and catch the shuttle to make it with five minutes to spare.

Our promptness was not rewarded, however. We waited to get in. We waited to get to the blood samples. We waited for the results which never came, so they took another set of samples. And we waited again for the results, which showed that there was more waiting to do since Krista's platelets were down to 6,000. So waited for the platelets, which ended up being another A-positive, dark-colored, patient-directed bag (yeah donors!). Then we waited for the platelets to transfuse, and by the time it was all over, it was almost 7 pm! Did I mention that Krista was in and out of the disconnected/pain/gag condition the whole time?

During all that waiting, Krista had one bright moment: a visit from Bindu, the stem-cell wing coordinator who has been such a source of encouragement. Krista got to share with her how much pain she's been in and how strange she feels. Apparently, this is common with stem-cell transplants, and it may be a sign of Graft-Versus-Host Disease (GVHD). The doctors want to see a little of this, because it shows that the graft is working and it will kill off any leukemia that might have slipped passed the radiation/chemo assaults. But too much GVHD can be really dangerous, and the doctors are going to be monitoring her daily in case they need to make some further corrections. Krista was feeling like she didn't know if she could make it through this level of difficulty, but Bindu reminded her of the progress she has made, and how others have made it through it as well. That cheered her up, but I can see that this is going to be a really steep hill for her to get over.

Getting out of the transfusion so late put us in danger of missing the last shuttle again. We made the call at 7:10 pm, and practiced waiting again. There was a lady there that I recognized from the shuttle ride last night, and we discovered that she was out here from Phoenix with her husband, Larry, who was supposed to have a brief visit but ended up in the liver-transplant ICU because of pancreatitis. You can join us in praying for Larry, as that could be a very dangerous problem. After sharing our reason-for-being-here stories, keeping an eye out for the shuttle all the while, we began to realize it was past 7:30 pm, when the last pickup is supposed to take place. Our new friend called for the shuttle again, and around 7:45 pm the shuttle finally showed up. And guess what... I got reprimanded again for keeping the driver there late.

Tomorrow starts early... we have to be at the doctor's office at 9:00 am this time so that we can get another platelet transfusion and make it back to the hotel for a 4-5 hour IVIG dose in the afternoon. Is this supposed to be easier?

Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against the anger of my foes,
with your right hand you save me.
The LORD will fulfill his purpose for me;
your love, O LORD, endures forever—
do not abandon the works of your hands.
(Psalm 138:7-8)

1 comment:

SB-Gal said...


I attend CCSB and I don't think we've met I'm praying for you and your family. Your pain breaks my heart by your spirit is so wonderful, even from a far.

I would love to donate platelets but I just spoke to Jaime and got turned down. I wasn't a perfect match but...

So while I can't physically help you I can and will continue to hold you and your family in my prayers, especially your children.

Your sister in Christ,