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, by the way. A long story I’ll spare you from. Still, good to know.

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So much for that last update . . .

So the doctors have decided to postpone the biopsy for a bit — the kidney seems to be healthy enough that they can push back the date to confirm it. Mostly, until they get to the bottom of the edema thing, they’d rather not take any chances with Machen’s over all health and why do something that could cause bleeding when we’re not sure what’s going on with his blood.

Essentially, they’re taking a “don’t poke the bear” approach. Which, while frustrating, is understandable. Honestly, Machen’s mother and I would prefer a “find out what kind of bear it is and get rid of it” approach. But that’s not on the table for the moment.

Meanwhile, his edema is looking great. Not because they’ve figured anything out, or because of the med tweak (it was as effective as they expected). But because he came home with a cold Thursday, and has been pretty much laid up with it all weekend. Personally, I think there’s a pretty big diagnostic clue there, but I’m not Gregory House (I’m not even Lawrence Kutner, for that matter), so I’ll leave that to the professionals.

Given his weakened immune system, we’ve got to keep a close eye on simple things like colds, because they can turn into something else pretty quickly, as I was reminded a couple of times last week by his doctor’s nurse. Even before he came home sick. So, we were on pretty high alert Friday when he developed a fever — that thankfully went away. And then came back a day later, and didn’t go away as quickly.

Actually, it got worse. Which led to a phone call with the on-call nephrologist, which led to us hanging out in the ER for a couple of hours last night while they could run a basic blood test and do some tests for strep and influenza. Everything came back looking fine — but we can’t be too careful.

Mostly, we spent the time being bored. He just laid in the bed, and his mother and I killed time playing with filters on our cameras. He didn’t find this nearly as diverting as we did and kept insisting we owed him a modeling fee for every shot we kept (nothing outrageous, I think the grand total might have been $10).



All in all, a slow night. So far the cultures they took have come back as clean as the original tests — and the fever dropped right about the time we got into the ER last night. So . . . probably much ado about nothing, but you never know.

We’ve got a clinic visit tomorrow, so I might be backtracking all of this. Or not — I don’t know. As soon as there’s something to report, I will.

Not Much More to Report

Since my last update, we’ve gotten very little news. We finally heard that the surgeons don’t want to do anything at the moment because they’re not sure they need to. Which makes sense to us (and, frankly, we really don’t want them to unless they <i>have</i> to). But there’s not a lot of progress on diagnosing what’s causing the edema, and if it’s something to fret about.

Last week, we had two doctors in the clinic visit — in addition to Machen’s regular nephrologist, his former nephrologist/OHSU nephrologist was in town, so he joined in the fun. They spent a little more time talking to each other than to us — but did remember to check in with us enough to not be annoying (especially when the OHSU nephrologist stepped out). They decided to tweak his BP medication, because it can tend to exacerbate an edema — but they were unwilling to attribute all of it to the meds. We’re waiting to see what that does. If this doesn’t clear up between time and medication within a month they’re going to get aggressive about it — but it’s unclear how. Or if there’s a giant need for it, but there’s no reason this kind of thing to happen.

Other than that, he got fitted for a belt to act as protective gear for bicycling, etc. It’s generally a good idea, we’re told, for transplant patients to prevent bruising the kidney doing sporting-type things. His kidney is apparently a little closer to the surface than others, so it’s really recommended for him. It was nice to do something a bit forward-looking, rather than just focusing on “is everything okay?”

Speaking of forward-looking — he’s got his 3-month biopsy coming up in a week and a half. Three months already! Various transplant centers, if they do them at all, do the biopsies at different schedules, but ours does the first at three months. I’ll talk more about that just before it, or the day of — but assuming things go the way everyone expects them to, we should start to scale back the medication, clinic visits and everything just a tad after this biopsy. Which will be nice for all of us. There’s a little bit of testing they’re going to do prior to the biopsy to make sure that it’ll be safe and they know what to expect as far as location/size/etc. Nothing major, really.

So that’s that — he’s still feeling fine, his voracious appetite is still pretty active, but it’s leveled-off (phew!), school’s going well (when he’s able to be there — thankfully, the school is being great to work with about that). Overall, things are going well as far as we can tell, and that’s just great 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.