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.

A Dream Drive for My Kid

Last Friday, I described the unexpected delay in our return home. In between the time when the nephrologist and radiologist had found something and the time when they decided how much of a thing it was that they found, I mentioned that I’d received a phone call, and said the timing “was absolutely the right time and a very pleasant distraction.” Then I promised to tell you the full story when it was complete — I’ve put that off for a few days, hoping to get some better photos than the ones I’ll be using. But those haven’t shown up yet, and I want to post this while it’s still fresh-ish.

Earlier in the week while waiting for something in the lobby area for the Ronald McDonald House, I’d seen an advertisement for something called, Dream Drives for Kids. It’s this non-profit that “provides sick and medically fragile children access to amazing exotic cars for an hour-long experience we hope they won’t soon forget. Our goal is to create joy by taking the focus off of doctors and disease … and putting it on Ferraris, Lamborghinis, Porsches, Mercedes, and more through a two-hour, fully interactive sports car experience!” I went back to the room, forgot about whatever it was I was supposed to be talking about and told Machen about this — naturally he was interested, so we called and left a voicemail which led to the aforementioned call.

Before I continue — isn’t that just the coolest idea? It’s also a nice justification for someone to indulge in car collecting — I say that without cynicism. Hey, if I had the means to collect cars, I’m not sure I’d be nice enough to do this. But really, when you have a medically fragile or sick kid, so much of their life can be wrapped up in their condition — giving them any kind of a break is a pretty great thing. This? Well, it’s just all kinds of great.

Now, they’re in the middle of a move — which sounds pretty complicated (I think moving books is difficult, books you can put in stacks). So Machen didn’t get the full experience — no tour, for example — he got plenty, though. After a brief discussion with them on the phone, Machen selected a Lamborghini to ride around in, a 2002 Lamborghini MurciĆ©lago to be specific.

Sure just saying “a ride in a Lamborghini” is pretty impressive, but when you can say “a 2002 Lamborghini MurciĆ©lago,” it’s much better. It’s in the details, no?

We make arrangements and meet up with them (I don’t see their names anywhere on their sites, so I’m not going to name them). They are about the friendliest people we met in Portland (which is saying something — 94% of the people we met in Portland were tremendously friendly), They took some photos of Machen and the car, talked to him about the car and one of the scandals associated with that particular model (apparently, many Lamborghini stories involve some sort of scandal), some of the features it has, etc. Then he started it up.

Sorry for the annoying beep at the beginning, I cut most of it out Note the contrast between the plane taking off nearby to the engine starting. Am told (wouldn’t know…) it’s about as loud inside. My wife’s video looked better, but the sound on mine is better — and I don’t move the camera around during this (sure, she blames the wasp that crawled into her sandal and stung the bottom of her foot, but whatever).

Naturally, after the starting of the car, came the driving of the car — I’m not sure what all they talked about on their drive — the car, obviously; Machen’s health, school and whatnot. We followed along with the family of the driver — in nothing fancy, but very comfortable, and watched the Lamborghini in action (by the way, it was still pretty loud even when there was a car in between us. Not loud in an annoying way, just a not-so-gentle reminder that an engine more powerful than yours is nearby).

I’m not a car guy at all — this is not news to anyone who’s spent more than 14 minutes talking to me (less than that if the topic is automobiles). But it is impossible to stand near this and not become one temporarily. It’s tantamount to standing next to the original The Starry Night and shrugging. It’s really a fantastic machine, and it’s no wonder that my son, the aspiring car guy — smiles like this while sitting inside.

It was a great experience all around — definitely the most enjoyable experience Machen had while in Portland (not saying that he’s not grateful for the kidney, not thankful for the care or anything like that — but on the whole, it wasn’t a fun time for him). But this? Dream Drives took his mind off of everything for a while and let him experience some joy.

Here’s a couple of other pictures — when we get the others (taken by someone who knows what to do with a camera, and not just a couple of parents with cell phones), we’ll share some of them. I think she got some good shots.