How Low Can You Go? Week Five

Well hi there everyone,

End of another week here. There is a reason that a roller coaster is an overused metaphor in a situation like this.

We started the week with low platelets, a dropping hemoglobin count and… we ended the week with low platelets and low hemoglobin. Wait, that’s a pretty sucky roller coaster. Anyway, it’s been a three-transfusion week. So, let’s see…

Monday was a long day at UCLA. Paquette, who has never said anything less than positive, sat on the exam table with her and told her these were not good numbers.

Lisa had 10k in platelets, but since they’d double transfused her on Friday (she had 22k and they still gave her a bag) the 10K didn’t count as being… well, 10k. So, they transfused her. It was also the beginning of us seeing that her red blood was in decline. It was 7.9 – now, 8 is the automatic transfusion point for any other patient than an AA patient. But, an AA patient has a future of potentially endless transfusions ahead of them, and there are complications to too many bags of red blood. So, Paquette wants to know… how low can you go?

In this world, 7.9 is no big deal (or as Paquette said, if it was 8.0 we wouldn’t be talkin’) so we agree no transfusion.

That said, poor nurses got it backwards. Normally a 7.9 is an automatic red blood transfusion, and a 10k is no platelets. Which is what the nurses ordered. We had to send back the blood, which is way more badass than sending back wine, and order up some platelets. ‘Cause that’s how this AA patient rolls!

Fun fact: when she has a bag of platelets that seems to hold longer, then drops again, the anomaly is the hold and probably due to that donation of platelets having been more compatible with her system.

Monday was also out first meeting with the transplant coordinator. Wow, you haven’t lived until you’ve had an appointment with a transplant coordinator. Really, that meeting was a mindfuck. None of it is an indication that we will end up having a BMT (bone marrow transplant). But it is an indication that her case is so severe that if the ATG doesn’t work she will need a BMT, so we have to be ready. So, insurance has approved her for the initial stages. Sisters will be tested. If they don’t match, then Lisa will officially become an patient at Be the Match. So, hold off and we’ll sign y’all up then under her name.

Wednesday her platelets were 6k – transfusion! But that’s not the big news – her hemoglobin was 6.75. Really, go look up with living with that is like. And it was decided… not to transfuse. Because she’s badass. How low can she go? (Um, let’s not find out, kay?)

I’m not gonna lie, Wednesday was not for sissies. She was white, and had zero energy, and a raging headache and was short of breath. It was the sickest she’d seemed since the hospital. But still, we laugh at those leukemia patients getting transfused at a measly 8.0! (We don’t really. Those guys are tough mothers.)

Today, she was 9k for platelets and 7.2 for hemoglobin. Up a touch, but still below the norm for someone having to get rushed to the hospital to get some mother-f’in red blood!

So, three platelet transfusion, no red blood.

Life? Let’s see… not coming to Theo’s birthday party was really hard for her. But a huge thank you to my Mom for being a great wingman. And everyone who came and endured the rationing of pizza slices. You new Wildwood folks have no idea what kind of spread we usually put out. Next year.

Thanks to my Mom for all her help, for JD, and Audrey. Everyone who has made food – thank you, it makes a huge difference. I take that time to spend with Theo.

We started with the new person we’ve hired to help. She covered Wednesday and will do Lisa’s UCLA day on Wednesday and probably Friday. And Norma, thank you for taking Lisa today, and helping out with the hospital next week.

Theo’s been a little angry this week. We told him we were angry too.

Lisa goes up and down in terms of energy and attention span. She can’t really return calls to most people, but text and she’ll text back eventually, and all the cards have been placed on our mantle. She appreciates hearing from people, just know you might not hear back. But it means so much.

And me, yeah… please forgive me if I haven’t returned emails or texts or calls. I’m trying to keep up, but definitely drop the ball.

More than anything we know that we are so lucky to have such an incredible group of people around us. And she is a tough mamma. AA will not win.



Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s