Sound and Fury, Signifying . . .

So part of the boilerplate warnings they give parents/patients before a biopsy is that bleeding can occur. Well, Dr. Bender catches herself at this point to say, of course bleeding will occur — a needle is being stuck into an organ. It’s just that bleeding might happen after the biopsy. Kidneys don’t always clot like they’re supposed to, apparently. But the odds of it being bad are small, and they know how to deal with things post-biopsy to reduce the risk — and even if it happens, they can take care of it.

It’s worse, actually, we’re assured after a biopsy of native kidneys. You should know, in case it happens to you. There’s a protocol for it like there is for a transplant, but given the location of a transplanted kidney, they’re easier to deal with.

But I digress.

After a couple of days of rest and care, the possibility of the wounds not healing properly is almost nil. Catch the almost. Now, Machen had no signs, really, of anything afoot. He was tired. Really tired, a lot in the two weeks after the biopsy — and we did talk to Dr. Bender about that, but no one thought much of it. He was also paler than usual, but not horribly.

Until his regular blood test results came back 2 weeks after the biopsy. And Dr. Bender calls right away, leaving me a voice mail saying that she’s ordered an ultrasound that afternoon and needs to talk to me about the blood test. That tends to get your attention, I’ve gotta say. His red blood count, hemoglobin levels and other things are low. Seriously low. Low enough to indicate internal bleeding.

His mom’s not available, so I’m able to get out of work for the day — so I grab him from school (I had to call the school right after I talked to the doctor to keep him from getting lunch and ruining the test). Oddly enough, but Machen tells me this is Standard, they spent the first half of the time (maybe longer) scanning his native kidneys. I guess I kind of understand that when they’re getting an ultrasound to check on kidney health — but when they’re looking for bleeding, maybe focus on the thing that was stuck with a needle?

Anyway, they made us stick around for a bit while they got an quick read of the results and then let us go home — which he and I took as a good sign. Doctor Bender called a couple of hours later to express a lot of shock — no bleeding. So we got to go back for more blood work. Three various tests within 23 hours — that’s almost post-hospital numbers.

It turns out that Machen picked up a viral infection, probably one that is preventing the production of Red Blood Cells. Which sounds bad, but is better than bleeding. This is what happens when you take a handful of immuno-suppressants a couple of times a day.

He’s still weak, still tired, and his blood tests don’t show that he’s bounced back in the two weeks since (we haven’t heard an official word about his most recent tests, but my uneducated eye isn’t impressed with what I’m seeing). I was hoping to have something more definitive to say about this virus and his recovery, but that’ll have to wait for a bit, apparently. We’ve got another clinic visit coming up Thursday, so hopefully by then we’ll have answers.

By and large though, the short version is this: the new kidney is doing great, the kidney’s host could be doing better.


Stuff has happened. Finally. (An overdue update)

On the one hand things have been incredibly dull and uneventful since my last update (almost 2 months ago — sorry about that). But on the other hand, what happened has been pretty big.

So, let’s start with the edema — the Achilles’ heel, and attention stealer, of the last few months. It’s decreased significantly, first of all. Which is great. But it’s still there. After a lot (we assume) of discussion and deliberation (none of it was shared with us — who knows, maybe it was a couple of text messages), The Powers That Be at OHSU decided to do nothing about it.

Which sounds snarkier than it should be — I don’t mean to sound ungrateful. I do know that they received regular updates from Dr. Bender. But I only know it second-hand (from Dr. Bender). It would have been nice if the people who were making the decisions about his health — about whether they were going to examine him for themselves — had kept us in the loop. Or even checked in with us once.

Anyway, the theory is as he grows, the kidney’s moving into a new resting place. With a little time, and a possible medication tweak, the edema should resolve itself in a bit.

Meanwhile, his blood work continues to be good. Dr. Bender has massaged some of the nutritional supplements, but everything else has been pretty constant for quite some time. Machen has started to take less of the steroids he’s been on. Thankfully, most of the side effects associated with steroids have not been seen — we’re all grateful for that. Best of all, Machen hit a record low for creatinine, which has been the major indicator we’ve been tracking of his kidney function. The last time we were at Dr. Bender’s and she showed that he’d hit a level that we’d only known was technically possible? It was awesome.

Back in October, I said the biopsy was pushed back a little. It had been scheduled again, and then two days beforehand, Dr. Bender scratched it again. Just to be sure about the edema. Now that the dust has settled on that issue, we were able to go forward with it Wednesday.

The procedure was interesting from the cheap seats (seriously, his mother and I got to watch) and fast — if you don’t count the the 40+ minutes it took to get the IV in. Less than 20 minutes from the time they got serious about set up and everyone was working to everything cleaned up and everyone out of the room. The IV thing is probably because he had a blood test the night before and had almost nothing to drink so he could have the biopsy (a real “The Gift of the Magi” moment).

Anyway, there we were sitting along the wall of the PICU room with 5 medical professionals (PICU nurse, Anesthesiologist, Respiratory Technician, Ultrasound Technician and Nephrologist) around Machen, and periodically we’d hear this sharp snap (like a mousetrap) and Dr. Bender would put the sample on the table. We thought about taking pictures of the process and samples (seriously, how often are we going to get a chance to see actual bits of kidney?), but it seemed gauche (and we were afraid of getting kicked out). Afterwards, Machen took a nap, got lunch and we left.

Really, after all the build up, it was nigh-anticlimactic.

We got the results Friday — no scarring, no damage, no signs of any problems. The technician who did the testing reported to Dr. Bender that Machen’s kidney was probably healthier than his own. Which is pretty much exactly what we want to hear.

We’ve got another appointment with Dr. Bender this week — regularly scheduled, and probably entirely uneventful. But I’ll try to post something either way. It’ll be shorter than this one, for sure. Sorry about the length, by the way. Oh, and Machen doesn’t have Celiac Disease, incidentally. A long story I’ll spare you from. Still, good to know.

Closer to Answers

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.

Some Answers, but More Questions

Sorry for the lack of updates — I really don’t like writing “So, X happened, but no one knows what it means,” or worse, “X happened, and people have ideas about it, but they haven’t shared them with us.” Thankfully, the latter isn’t a real problem for us.

So, despite not having anything definitive (or approaching definitive) since the last update, Machen has had his regular clinic visit and a CT test.

The clinic visit initially focused on his most recent blood tests — all of which were within normal/acceptable ranges. But seemed to be trending outside of those. This trending, coupled with his continual higher blood pressure (even after increasing his blood pressure medication), edema and whatever is/isn’t going on with the bruit left all the nephrologists involved with him scratching their heads. Edema? I haven’t mentioned that before — 1. well, yeah, it wasn’t that bad before, and no one seemed to be paying it much heed, figuring it’d resolve on its own, and 2. it hasn’t and it’s worse. Dr. Bender had some ideas about treating the edema and tweaking the meds some, but didn’t want to try anything until the CT scan gave some answers about stenosis or anything else.

The CT was a bit of an ordeal — the first IV they inserted to get the contrast dye in his blood blew before it could be used, and then they tried several times to get one inserted. In the end, it took 4 separate RNs 5 following tries — 3 of them using an ultrasound to find a vessel to insert the IV into — before they got it taken care of, all in all taking more than an hour. All for a test that took something like 3 minutes. An ordeal to be sure — it’s like he’s having his vessels tapped at least twice a week for the last couple of months or something.

But is was worth it — the CT shows no stenosis in the artery (I’m hoping to ask some questions about that at our clinic visit Thursday, I’m not 100% sure we’ve taken them off the table), but suggested something hinky with the vein, but nothing definitive. So that’s two tests pointing at that. We seem to be closing in on something. Not only that, his regular blood work on Friday was great — all the things that seemed to be trending in a bad way the last few visits, were off that trend and in a better place within that normal/acceptable range. In fact, she cut back one medication a little bit. Dr. Bender was very encouraged by both the CT and the blood work (especially by the blood work to my ears).

Still, questions remain — we can breathe a sigh of relief as we prepare for more tests. At the next clinic visit we’ll go over these blood tests in more depth, plus Tuesday’s draw; as well as looking at the CT Scan for ourselves (not that we’ll see anything the experts didn’t, it’ll still be cool to look at).

But first, on Monday he’s going in for an ultrasound focusing on the vein — and those results will govern the next steps we take — Dr. Bender has some theories, but until we get more data, I’m not going to try to explain them (because I’m only vaguely aware of some of them, and am in no position to evaluate). Hopefully, we’ll have something by Monday night to tell you. If not, I’ll try Thursday.

Finally . . .

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.

Trouble Bruit-ing?

Okay, that’s a stretch. But, you get what you pay for, right?

So, first — sorry that I haven’t updated you on anything since we got home. There’s some stuff I should have said, but mostly it’s “things are getting back to normal (normal, plus meds and a lot of blood tests) and he’s doing fine!” Still, I should have. I will try to get better about that.

But here’s something else. That bruit that caused all the hassle just before we left is the subject of our focus right now (see this post and then this post about the term for reference). So after the doctors and surgeons at OHSU decide that it’s nothing to worry about (but we should get another ultrasound to verify that soon), we bring it up with our home-base nephrologist. She’s game to do the ultrasound, but isn’t sure she hears anything initially. A week later, she hears what all the fuss was about herself — apparently Machen’s bruit isn’t where she expected to find it, but once she did, she wasn’t just game for getting the ultrasound, she worked to get it done quickly.

That happened this past week, and there are two notable places where the blood velocity changes around the kidney — one in an artery, one in a vein. This is what the bruit was pointing us to. Stenosis. Which is to say, that the artery affected is narrowing before it reaches the kidney. Renal Artery Stenosis causes blood pressure to rise — not a good thing in anyone, a very bad thing for transplant recipients. Machen’s been dealing with high blood pressure since the transplant (not uncommon), and has even noticed this BP rising after increasing his medication for it. Long-term, this can lead to kidney failure.

As you can expect, those last two words kinda freak us out.

So, what are we going to do? Well first off — we’re not panicking. We’re not getting excited. We’re not afraid. We are very aware and are working on getting some answers.

Secondly, we’re waiting for the transplant surgeons at OHSU to weigh in on this. This is their bailiwick, it’s going to be them in the driver’s seat for treatment. Our nephrologist is consulting with the kidney specialists at OHSU, but says that this isn’t a medical treatment issue. No medication will help, it’ll be surgery. And since our local hospital doesn’t have transplant surgeons, we’ll be headed back to Portland for this. IF they decide that this is something that needs intervention.

Thirdly, and this is mostly what we’re doing — is trying to be patient. We got the word about this on Thursday (Dr. Bender got the results Wednesday and started the ball rolling). As of this writing, we haven’t heard anything yet. Patience is hard.

From all that we’ve read and heard, this isn’t an urgent situation. I want to stress that, because when people read this post or have a chat with us and we use terms like “surgery”, “kidney failure” and “back to Portland” they focus on those phrases and not on the rest of what we’re saying. So, this isn’t urgent. It may be serious, it may be really serious. But it’s not an emergency. By the same token, when/if it’s decided we’re going to address it, we’ll be doing it soon. As Dr. Bender said, “we’re not waiting until he’s off school for Christmas.”

Machen’s feeling fine — he’s in no pain because of it, doesn’t feel this at all. We only know about this because of stethoscopes and ultrasound tests with doppler readings. He’s feeling fine, is in good spirits and is eating like a 14 year-old boy (which is its own brand of trouble, don’t get me wrong, but parents of 14 year-olds all over know this trouble).

That’s all that I know right now. We’ll update the blog within hours of news — and maybe have a post or two about the good stuff going on, too.

Hit the Road, Jack

Okay, we’ve been given the proverbial Green Light (not the one from The Great Gatsby, the other one) to go home.

We will have to keep an eye on the potential bruit and there’ll probably be an ultrasound in a month, and who knows what from there. I’m feeling more secure about that now and the likelihood that everything is fine than I was Friday after the details we were given.

Then he’ll have a kidney biopsy around the 3-month mark — it sounds like that’ll happen in Boise. And . . . well, we’re a little murky as to what happens after that, actually.

But first, a little drive across Oregon, greeting our dog (who is elderly, and I hope her heart survives the joy at seeing my wife — she’ll be happy to see Machen and I, too — but it won’t be a health risk) and our other kids (priorities). Then we have a few things to take care of — getting the Lab here used to our new protocols and testing, meeting with the local nephrologist and setting up a new schedule with her (no more of this every 6-8 weeks nonsense for awhile — we’re guessing, anyway), meeting with some people from the school to get him going there.

Here’s the best part — Machen in particular has to be looking forward to this. We will spend some time in separate rooms. Maybe even out of earshot of each other. Since July 17, with the exception of his surgery (pre-op and post-op, too) and a few hours last weekend when my mother, sister, niece and oldest son pinch hit for us, Machen has had one or both of his parents within a few feet of him 24/7. Generally, the same room/vehicle. Can you imagine spending a month and change like that when you were 14? Somehow, we haven’t gotten on each other’s nerves too much, which is fantastic, but I think all three of us wouldn’t mind a little time on our own.

Once we’ve enjoyed a change of scenery, gotten the ducks in a row for the next couple of months of recovery, etc. Then the three of us will work on rejoining our regularly scheduled lives, already in progress.

Thank you all for reading, for your support, for your talking to us via social media, emails and otherwise — about our time here and your lives (it’s nice not to think about transplant stuff all the time). We’re not done posting here or anything — I just wanted to be sure to say it while we change gears.