So the ultrasound showed pretty much what the CT did last week — but did eliminate the primary concern related to the vein. I still have some questions, and am hoping they’ll be addressed Thursday at his clinic visit.
But the focus now is that the kidney seems to be laying on top of the major veins underneath it — and this could be causing the edema. This was noticed on multiple tests and the nephrologists have passed it onto the surgical team to see if they have any ideas.
No idea how long that’ll take. But after the last time, I’m not feeling incredibly optimistic.
We finally got the call today that we expected Thursday — the surgeons aren’t convinced there’s a problem, but it seems likely. So — more tests. Specifically, a CT scan, which can be done locally.
I did appreciate this — they took our location into consideration, they didn’t want to bring us to Portland for some other test (it wasn’t named) just to turn around and say that “Yes, he needs surgery, so come back next week.”
The OHSU nephrologist (his former local one) did stress that this kind of thing is incredibly rare. Which is good to know, I guess. He also said he doesn’t expect this to be fixed without surgery. Which is also good to know, I guess. That’s not what we’d hoped for — still hoping that the CT scan will give us different news. But it’s better that we go into this with open eyes.
I asked Machen what he thought about going under the knife again. He told me that he wasn’t really nervous last time until just before they got to the OR (and suggested that nervousness might have been due to the anesthesia — ahh, to be 14 and immortal again) and feels like that now — his thinking is it worked fine last time, so it should be fine this time.
I hope he stays this nonchalant about the whole process, for his sake, anyway.
Last Friday, I mentioned the potential problem the nephrologist was concerned about and described it as:
During the exam she’s heard something in the kidney, roughly equivalent to a heart murmur. I can’t remember the term she used, I think it starts with a “b.”
Machen’s old pediatrician (er, not old. Former, I totally meant former) told us: “FYI B = bruit, for your learning pleasure. . . . it is pronounced ‘Brew ee’.”
According to MedicineNet:
Bruit: A sound heard over an artery or vascular channel, reflecting turbulence of flow. Most commonly, a bruit is caused by abnormal narrowing of an artery.
Based on some input we received, we decided to get an email address setup just for this page — we’d give you Machen’s, but we don’t want them to get lost in the mix with his video game notifications, memes, and other silliness that 14 year-olds fill their inboxes with (also, he’s a kid and I’ve watched more than one SVU episode). It is thebackupkidney at gmail dot com. Not really clever, but should be easy to remember.
The messages will go directly to Machen and his parents, but primarily Machen will be receiving them.
(if I really cared, I’d have put in the claps…)
Today’s the Day! Geronimo . . . . .
Stay tuned for Updates. We don’t have a real schedule yet, but we’re looking at something before noon.
Machen’s nephrology check-in was yesterday, and his status is by-and-large unchanged. His kidney function is down 1 percent — which sounds bad, a decrease is a decrease, and 17% is less than 18%. But he’s been bouncing back and forth between those two numbers for months, and we’re a long way from troubling numbers* Everything else in the blood tests was fine — the word “perfect” was used a couple of times, otherwise, things were on target for this point.
I think it’s possible that his Nephrologist is getting as impatient as we are.
Now, a little bit of follow-up from the last post. We got a few questions about the particulars, and a few people expressing interest in donating. A couple of these bowed out due to family concerns — which absolutely makes sense to us. One person was quite upset to learn that they wouldn’t match up with the requirements. Thankfully, however, there was one person who seems to match up and is taking the first steps with the donor coordinators for testing.
The thing is . . . in this last round of potential candidates? We knew none of them. Not a one — they were simply people who read/heard about the need and stepped up. Sure, maybe all they did was ask one question — but that’s more than most. Some spent days thinking about it — and the one who’s started the process has spent more than that considering it, but I’d never really met her until last weekend.
Mind-boggling doesn’t really express it, gratitude seems like an insufficient word to express what we’re experiencing. Our God is good to us and this gracious display to us of His care for Machen brings us to our knees. We have a long way to go, no matter what happens, but He has got us this far, we can trust that will continue.
Speaking of gratitude, thanks for your prayers, expressions of support and encouragement. They’re a tremendous help.
* And yes, I’m fully aware the “long way” could vanish in a matter of days.
Let the record show, I’ve started each entry in this series of posts a number of times (at least 4 each) over the last months. Let he record also show, I’m easily distracted and pretty lame, because I should’ve been able to actually post them weeks ago.
We’re going to start with the easiest — and most important update. Machen’s now listed on another list — one for paired exchange. I mentioned the possibility of this last year. After months of tests — and a nice little scare that turned out to probably be nothing, definitely nothing that’ll stop a kidney donation — my sister was approved to be a donor in a paired exchange.
What’s that? “When blood tests reveal that a donor is not compatible with their intended recipient, both the donor and recipient may choose to enter an exchange or ‘swapping’ program with other incompatible donor-recipient pairs” (from OHSU’s website).
Now, my sister’s got a rarer blood type, so we’re told that this isn’t likely to bear fruit. The metaphor they apparently prefer to use is that she won’t get a lot of people asking her to dance — but the way we think of it is that given the rare type, there’s someone out there who really wants to dance with her. We just have to hope that they know someone with an O blood type. Because, again, a Live Donor is so much better than the alternative.
Anyway, that’s another hope for us. The best thing, of course, would be for us to stumble upon a matching donor. One more time, the basic requirements for that would be:
- blood type O
- 21 to 55 years old
- BMI of 32 or less
- not diabetic
- no history of high blood pressure