A Statistic of One

“But, that’s too high!”

That’s what we heard The Guy say from the hallway as he was getting our blood results before coming in to talk to us. That’s too high. And I thought to myself, can he be talking about us? And is ‘too high’ good? Or bad?

And Lisa was thinking to herself, was he talking about us? Good? Bad?

Then he bounced in, as he has a want to do, all coy and happy, and whatever was too high seemed like maybe it was good.

And oh boy was it good.

So, a rewind. In the past two weeks Lisa’s platelets had continued to surge upwards, while her hemoglobin has lagged behind. During the 2 weeks we were supposed to be sans Doc-time, her nose bled and we went in for blood tests. Her platelets were 33k and her hemoglobin had dropped to 6.9, very low.

All of which begged the age old question, ‘what up, hemoglobins?’

So today Paquette walks in and asks confused, “Did you get a transfusion last week?” Yeah, we totally got a back alley transfusion on the Venice boardwalk. Bad idea? No! No transfusion. “You sure?” “Yes, we’re sure!”

“Then this is big!”

And he lays it on us.

Her hemoglobin is 8.3! Waaaa? From 6.9 on Thursday?

And… her platelets are 50k! The magic 50k! She can have surgery! She can drink alcohol (which we shall do tonight!). She can engage in somewhat risky behavior!

The Guy said that this was the trajectory her reticulocyte count had indicated, but the last two weeks had been so strange. “Well, you know she had the stomach flu, right?” THE STOMACH FLU! That explains it! That’s what happened with her red blood when everything else was pointing towards a meteoric rise!

So, I keep mentioning that pesky PNH. It is very complicated, and there’s no question she has a small population of it.  Most AA patients don’t have it, but some do. It’s a whole other syndrome. She has about a 5% population of it. It’s a biiiig deal if it grows and hits 50%, but at 5% her body can deal with it. And the very stupid layman way of saying this is PNH clones eat red blood cells. And their fear looking at the numbers not knowing she was getting sick was that the PNH cluster had grown, and although the reticulocyte count was showing baby red blood cells, they were getting eaten before they could grow… like a bad post-apocalyptic game of hemotologic Pacman.

What they now think has been happening over the past few weeks is that she was getting sick, got sick, and was getting over being sick. And while her other blood parts were being distracted by the stomach flu, the PNH fuckers were sneaking in a eating the red blood cells. (If I were giving notes to this disease I would really be recommending a simplification of the storyline). Anyway, now that the body is getting stronger the PNH clones are back in check.

It is all in indication that for a long time to come, like forever, Lisa will need to be more careful than the average bear about getting sick. She should never be around sick people, and should always be a handwasher. Because on top of getting sick more easily, and having a harder time getting well, sick is a Trojan horse for those PNH clones to get in there and chow down.

Blah blah, her numbers are remarkable! In less than 3 months, she’s having an incredible turnaround.

A few weeks ago when I was talking statistics with Dr. Josh, we were reminded that 40% of people relapse from ATG. But then he looked at us with his Baby Blues (Lisa referred to him as Grey’s Anatomy to Paquette today, and he looked puzzled for a half a second before saying “Josh?” and if he sees it, you know it’s cute), anyway Dr. Josh said, “But you’re a statistic of one!”

True ‘dat. Good overall life lesson really. We’re all a statistic of one.

And in that conversation he’d said that one thing he did know is that people whose numbers rose slowly, or never made it back to the full amount, were more likely to relapse, but the patients he’d seen who really had pretty much full recoveries were the ones who just shot like a rocket all the way up.

Lisa in on that trajectory. So let’s all cheer her on! Go baby go!

The caveats: Not much today except to remind you that she had 50k platelets instead of 150k. I’m not sure about the adult scooter she wants for Christmas. I’m not even joking.

At 8.3 hemoglobin she’s above the transfusion level for the first time in over a month, but if YOU had 8.3 you’d be severely anemic and all bitching and complaining and using it as an excuse to bow out of every holiday party you didn’t really want to go to in the first place.

She still needs to be careful. She will tire easily. We can see in the last two weeks that when her body is preoccupied bad things happen.

Enough of that. I had a great trip to NYC, where I met Robin Roberts, the host of Good Morning America who had a Bone Marrow Transplant when she had bone marrow failure. She was amazing, and such an inspiration for how far back Lisa can come. It was also nice to have a break, and to see so many of my closest family and friends.

Huge thanks to everyone here for holding down the fort with Lisa and Theo.

Now, go buy a bottle of Scrumpy (or any other hard cider), which is Lisa’s favorite drink and raise a glass tonight. Because for the first time in a long time, I won’t be drinking alone (wait that didn’t sound right).

So much love and thanks for all of you on this long march back to health!!

Chris

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5 thoughts on “A Statistic of One

  1. Well my day has been made!! Thank you for sharing good news !
    I’m sending More healthy vibes your way!

    Ps (I do agree with your notes to the disease. Verrrry complicated !)

    Like

  2. Way to go on the upward trend! Wishing Lisa gazillions of red blood cells, kajillions of platelets, and shitload/butt load/motherlode of whatever else she needs. We’re here if you need us.

    Like

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