Down Day: Day 8

Hi everyone-

Today is a down day in terms of doctors and tests. We’re just trying to plan, and make some decisions – mainly, do we call Paquette right now and tell him to start the admission process, or wait until after the Monday morning blood test to erase the magical thinking.

Lisa’s feeling in some ways worse today. It’s hard to say how much is emotional ( to be expected) but also her blood is dropping. Her platelets have been boosted by the transfusion not her own body. So when she hit 50k it was artificially inflated. She’s lost 30k in a week, and at 23K two days ago (so let’s say averaging her drops 20k today) she only has 10k to go to the 10k level, which is where spontaneous bleeding starts to be a concern.

One thing we did learn is that often one of the three blood parts fights harder than the others in AA patients. In Lisa it’s the hemoglobin (red blood cells) which is the piece that really regulates her energy. So, that kind of explains why she’s still looking so strong. That and well, she is fucking strong.

Also, The Guy explained to us that she’s no doubt been in decline for some time, and would have been at 10k platelets by the time the bruising started, so that’s the end of Alaska. Amazing all she’s done in that time.

So, what’s to come? Well, we considered going straight to a bone marrow transplant, which is the action in someone younger, but have decided to try the immunosuppressive course of action first.

She will go into the hospital for 5 days to administer something called ATG. She’ll get a pic line into her heart. Lots of people get repeated transfusions after treatment.

After the 5 days she goes home and onto crazy heavy steroids. Will she lose her hair? (she asked?) No! In fact, she’ll grow more hair. (Wait, what?) Not something a middle-aged woman wants to hear – that there will be more to pluck. But okay.

There are fears of allergic reactions, and there are tremors, and joint pain and… as Lisa says in her best moments… “bring it on. I just want to live.” I think we can all get behind that sentiment.

We won’t know for 3-6 months if the treatment worked.

If it doesn’t we could try another round of ATG, but unless she didn’t have a bone marrow match by then, we’d probably go to the transplant. Her sisters are lined up to get matched. We’ll see what happens. The doctor feels confident she can find a non-related match given time.

Shout out to long time reader, first time contributor Ben B. for finding the AA book online. If anyone wants to understand this more:

http://assets.aamds.org/aplastic/fi…aGuide.pdf?q=understanding-anemia-and-fatigue

BEN B: I read this part of the brochure (yes, I’m reading it too) and I’m so happy you’re so on top of all of this:

“For me, diagnosis took three months. I went from doctor to doctor, trying to fi nd out what was wrong with me. I fi nally found an expert on blood problems who was able to pin down a diagnosis. So although I’m bummed about the disease, I’m relieved to fi nally know what I have.” —Kaitlyn

We would point out, look at the credit page. This national organization in Maryland has one doctor listed… and it’s The Guy. He literally wrote the book.

So, we’re grateful that in one week we got the diagnosis, we got the doctor, and we have the insurance piece worked out. We know we are lucky to have access, and money, insurance, jobs we can drop without being fired… at least not yet… and we know how to be advocates. Lisa for herself, me for her. The system isn’t set up to work this kind of diagnosis on its own, and we feel for people who don’t have the resources we have. But damn we’re gonna use ’em.

That’s what we’ve got for today. I’ll soon be browbeating everyone to join the Bone Marrow registry, which works by reaching critical mass, but after I talk to UCLA’s transplant specialist on Monday, I’ll be able to say for sure which organization is the best. Hopefully the one I’m already registered with.

I’m learning some people nervous clean, I nervous write.

Love
Chris

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