This update isn’t going to be as clear as most of them. Because Immunology is super hard, turns out, and I don’t fully understand all of it.
So we saw immunology at the request of Transplant. We’ve seen Immunology in the past – when he was having all those blood infections from his central lines, and then right before and right after transplant – and they said he had some immune deficiencies but some IVIG should take care of it, get him through the post-transplant period, and he should be fine.
And he was, for the most part. In fact, he had low IgG at that time, and now he doesn’t.
But then the CMV kept coming back. All the respiratory infections. Bunch of other infections. All mild, nothing super big, but just constant. Which I had assumed was just… normal. But when you make a list of all the infections, it’s a really big list. Big enough that Transplant was shocked when we really listed them all out. And then include the mystery fevers and the UTIs that aren’t UTIs… it’s a big list.
So back to Immunology.
They ran some labs. And I don’t understand most of them. I mean, they’re all numbers and random letters. And Google is absolutely no help. I can Google the individual things, for the most part, but putting them together to make some sort of picture that makes sense…. nope. Can’t do that.
The one thing I could definitely tell on my own (and later was explained by Immunology) was that he has issues with his NK Cells. To call it NK Cell Deficiency, this has to be the person’s only immune issue, and that’s not the case here, but I’m still hiding in the NKD groups anyway, because I don’t know where else to go. Regardless, as of the present time, it seems evident that not only does he have too few NK cells, but the ones that he does have do NOTHING. The actual result was “virtually no activity.”
NK Cells are the cells that are supposed to respond quickly to viral infections and cancerous cells. Teddy’s just can’t be bothered. I’ve been looking for a link to put here of what happens when your NK cells don’t work, but I could find basically nothing. Because basically nobody really knows much. Whoohoo. In fact, most articles start by acknowledging that, essentially, we don’t know much about NK cells but we know they’re important based on looking at people whose NK cells are either too few or too lazy. There’s this, but it’s just a lot of long words to say, “well, who the heck knows, anyway…” and then a bunch of majorly depressing shorter words about all the things that destroy the people who have this.
He also has impaired T-cell function. That is from the immune suppression, probably. The “probably” part makes me giggle a little. Like I said, immunology is hard. (A study published in 2015 says, “But the immunoregulatory mechanism of FK506 is still largely unknown.” (FK506 = Tacrolimus, one of the two immune suppressants T takes.) So we’re doing this to him on purpose. Probably.
Then he has antibody deficiency. To determine this, they look at whether he responds to and maintains a response to the immunizations he’s gotten. He hasn’t. We’d previously determined that the MMR was essentially a waste of time (man, remember all the bellyaching I did over that one? Those two, really? So close together like that to squeeze them in before transplant? Shoulda skipped it.). I can’t remember which other ones we’ve checked, either around transplant time or more recently, but every one we’ve checked has come back as not immune. Not immune despite, in some cases, extra doses. More reading here.
And then there’s the rest of the effects of immune suppression.
So I don’t think this is the end of the story for T immunologically. I don’t know if having two or three things wrong with his immune system means there’s one over-arching immunologic diagnosis… it’s certainly not specified in the clinic notes and is one of my questions for our next immunology appointment. It’s also possible (I want to say likely, but we’re not going there) that the results from Genetics will shed some light on this.
Teddy started SCIG and will continue it until the end of time.
Subcutaneous Immunoglobulin. It’s an infusion of immunoglobulins that goes in under your skin. Once a week, Teddy’s going to get an infusion that will last for an hour or so. The medicine goes under his skin in a big lump and then is slowly absorbed over the next 24 hours or so. We did the first one last week at UI and it was fine. We’ll either go back again this week or we’ll start doing them at home this week. We’re still waiting to hear one way or the other. (Because, you know, we don’t have anything ELSE on our schedule, right?) This is what he’s getting. We’ll do this every week for all time.
And it’s fine. I hate it. I hate it a lot. I super hate it. I hate it. We may not see any improvement in infections for SIX MONTHS!! I hate that, too. We have to do this every week. EVERY WEEK. But it’s fine. I mean, I’ve given him injections. Daily and weekly injections. This is better than that. Right?
It’s better than dialysis. Dialysis was nightly. And it was awful. This should be OK. But it’s just one more thing, you know? One more thing. One more thing for us to have to do at home. One more hour and a half of his life every week that we have to devote to medical things. 78 hours a year. One more thing I have to do to him. One more thing I have to force on him. One more time I get to be his nurse AND his mom all at the same time. One more thing.
I don’t want to be misunderstood here. I’m happy to do it. I would do anything he needed. Gladly.
But I’m so tired of one more thing.