It's been awhile since I posted anything about where we're at, medically.
This past week we had a meeting with the head of the Hematology team. I've been wanting to ask her some very serious questions but I've been afraid of the answers. One of the questions involves what our future is likely to look like, where Brian is concerned. I realize they know very little about the form of HUS Brian has, but I want an idea about what to expect, so nothing surprises us. Well, she didn't give me a very encouraging answer. Basically, she's sure his disease will follow the pattern of his cousins, whose case they are "investigating" so they have an idea of how to treat Brian's case. This answer means a few things for us. It means Brian's kidneys will eventually shut down, and he'll end up on dialysis and some point. And it means that even if he DOES get a kidney transplant, the disease will still run rampant in his blood and it will just attack the new kidneys. It means a very, very long and discouraging road for us.
The other question I asked was about the possibility the disease is genetic. Meaning: Is there a chance my kids will also have the same genetic disposition to the disease. The answer: yes. There is a very high chance that this disease is hereditary, given what's happened so far. So my kids will have to be tested at some point if Brian's. As a Mom, the nightmares of having sick kids started the instant I heard that. I have been in a constant state of panic since hearing that. Of course, we don't have the genetic test results back yet so we don't know for sure, but her thought is that the test will come back positive for familial HUS. It's a very, VERY scary thing for me and I haven't done very well at handling it.
Brian had a "Vortex" placed in his chest. It's an uncommon type of a portacath that has two "tubes" (I don't know the proper terminology) coming out. The nurses have struggled so much with his veins that they had to do SOMETHING to make it easier. Every three days he has to get the line flushed so infection won't occur, so we've added that to our "medical calendar". At least he only has to go to the local hospital, not an hour and a half away! And so far he's seeming to do quite well receiving a PLEX treatment every 7 days. I don't know that we could handle any more than that (the week where he had three PLEX treatments in one week was brutal!!). But we'll do what we must.
This is getting long and I'm finding myself distracted, so I'll end it there!
