Blood is Thicker Than Water … Faster Too!

Hi everyone,

 

It’s been about two months since I sent y’all an update. But we saw Paquette today, and I’m trained to update everyone as soon as we’ve seen The Man.

 

The last two months: we went to Hawaii, which was fab, but did tire Lisa out when all was said and done. Maybe all the scuba diving, and the trip up the volcano to 12,000 feet above sea level weren’t the best ideas for someone without full oxygenation of her blood, but hey, we had fun. And Lisa’s desire to do everything is the same drive that will bring her through all of this. It was great to spend time away together:

Over all, when she isn’t sick, her energy is better than it has been since this craziness all started.

 

She has been sick a lot. By that I mean, and this is a big distinction, sick with illnesses that you and I would get, but not “aplastic anemia” sick. This distinction is something that Theo feels strongly about. He calls her blood illness a disorder, and colds and flues are her being sick. When I tell him that she’s not feeling well, he always stops to ask is she sick, or is she disordered. Of course, she wouldn’t be sick if she weren’t disordered, but these are the semantics we live in these days.

 

So yeah, she has continued to pick up every little bug going around. So far this winter she’s had the stomach flu 2x, a couple of bronchial viruses, staph infections and… well, you get the picture. For someone who used to never get sick, it’s a bummer.

 

The last month have also been heavy heavy with headaches/migraines. We don’t know if it’s related to her drugs.

 

And yes, the drugs. A lot of what’s bugging her now are side effects from the 10 cyclosporin pills she takes a day. She’s been dying to start to taper.

 

So… here we are. Brush up on your blood counts… We seem to have pretty much leveled off with a new top.

 

WBC 3.7 – up a tick

HgB 9.8 – down

Platelets 107k down from one higher spike, but basically this seems to be her new top. 150k is the low end of normal.

ANC – .8

 

While not normal, these are totally livable, and pretty great for someone with Severe Aplastic Anemia.

 

And… he’s finally ready to start the taper on her drugs. From 10 cyclosporin pills a day, she now gets to take… 9 (really, just 9?). Okay, 9. Yay! Still the taper won’t be fast.

 

Her blood pressure has been high, so she may have to go on something for that until we can get lower on the cyclosporin.

 

I know, that all sounds… like a lot… but we feel pretty good. Lisa always wants it to be a pure win. And we both thought her numbers would be higher… but that just means, when she isn’t sick (Theo sick) she’s feeling pretty good.

 

We will get another blood test in 6 weeks, and (hopefully) won’t see Paquette for another 3 months.

 

Paquette did use ‘remission’ a few times to describe Lisa right now. I think that for someone will SAA, these numbers, if they hold steady, are considered remission even if it isn’t normal. So that’s a big-assed thing to hear from him.

 

Let’s hope lowering the drugs doesn’t change anything.

 

Now, if we could only get the pool moving as quickly as her platelets we’d be good…

Soon! Hopefully, soon!!!

 

Next big adventure – we’re going to Iceland in August – checking off another place on our list. Someplace clean, with good healthcare, and a reliable blood supply. I might become a very nitch-y travel agent when I retire from Disney.

 

With lots of love—

 

Chris, Lisa and Theo