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.


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.

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.

Vials and Probes and Wands . . . Oh, my!

The main point of the trip this week was the testing — and Machen went through plenty of it.

Wednesday, the first appointment was in the Lab. A very nice phlebotomist grabbed a very long list of pre-printed labels to check the name and DOB for him — a very long list. I joked to Machen that I wasn’t sure he had that much blood in him. At this point, his eyes were so large, I wasn’t sure he heard me. Did I mention that the phlebotomist was nice? Because she really was, she pampered him and fussed over him a bit as she got him ready. I tried to distract him by joking around a bit, but he was too intent on counting the vials as she filled them (think of the Count from Sesame Street without the accent, thunder and laughter). 22 vials was the grand total. Another phlebotomist saw the pile of vials and joked that Machen probably was a 10 pounds and an inch smaller than he’d been when he came in. The nice lady taking care of him kept fussing, making sure he drank some juice and tried to get a graham cracker into him, and wouldn’t leave for her lunch break until she was sure he didn’t pass out in the rest room after filling his sample cup.

We then met with a dietitian, who did a pretty thorough interview about his eating habits and talked a little about how nice things’ll be after the transplant, if not downright strange. For example, now he’s supposed to avoid phosphorus in foods, and afterwards, he’ll need a little more than usual. Basically, he’s supposed to focus on a heart-healthy diet.

Then we had an examination by The World’s Quietest and Most Encouraging Pharmacist. He was really cool, and assured us that Machen was really healthy and was going to do a wonderful job at this. And then gave a very insistent mini-lecture to Machen, that never for a second sounded like anything other than a pep talk, about how essential it will be for him to take his medications.

The former director of kidney transplant services was the next Doctor to see us — his exam was very thorough and careful. He seemed very encouraging and positive about the whole process and Machen’s prognosis. A running theme for the two days, I should add.

Then we went for an EKG. It took almost no time at all — sorta the opposite of the blood work. I have no idea how it went, other than fast. Fast is good, right?

Day 2 started in the lab — this phlebotomist couldn’t believe that he had anything left to give, but since I assured her that we were supposed to be there, she checked again, and apparently there was one more vial to give. A lot of fuss and bother for that measly amount.

We then got an X-Ray on his hand — to show his “Bone Age.” By the way, it’s about his chronological age — which is not usual for someone with kidney failure. Then, after we insisted that he was supposed to have another one, they double checked and got him a chest X-Ray. This was thankfully not a trend that continued — and was actually the result of them being speedy and efficient.

Next was an ultrasound — he had to fast for this, which was hard for him. Actually, he really didn’t eat less than usual during this time — but knowing he couldn’t was a first for him. Anyway, I never expected to see a pancreas, liver, spleen, etc. looking as splotchy and blurry as a pre-born child. Someone looking at a baby’s ultrasound once asked, “What are we supposed to be seeing here?” and got the reply, “I don’t know, but I think it’s about to attack the Enterprise.” Well, Kirk and Picard together couldn’t save the Federation from this invasion fleet. I only had a clue what was on the screen thanks to the labels the tech typed.

After a large (for Machen) breakfast, he watched the first 30 minutes of Diary of a Wimpy Kid during an echocardiogram (I heard it and got a little reading in). I have no idea what happened during it, but the tech seemed nice — although she only had minimal interaction with him.

After an eye-opening session with a Social Worker (I’ll talk about that in a separate post about what we learned), we met the clinical director of pediatric nephrology at OHSU and our transplant services coordinator. The latter is the only person in the world that I never let go to voice mail. She calls, and I answer, no matter what. It was great to meet her as she sketched out the next week (see my last post). The clinical director gave him a quick, but thorough, exam and then went through all the same steps that we’ve heard through the week about what’s to come. Which was great, because we needed the refresher to better remember everything — and because somehow she made it sound almost new. She was also very encouraging, very positive about Machen’s prognosis, and very insistent that we make sure he takes his meds.

I appreciated her voicing something that had been in the back of my mind — that while a lot of us want to make things like taking medications a way to teach kids responsibility, and that we and his school might be wanting to take that tack — the anti-rejection meds are not the thing to do that with. We need to treat these as utterly essential, maybe even more so than air (that’s my take away, not a quotation from anyone at OHSU).

Okay, that’s the first post on our trip, Step 1 in this particular leg of Machen’s journey.. I’d planned on it being short, and then forgot about that. Hopefully it wasn’t too bad for you 🙂 A lot of poking, some prodding, and more of that ultrasound goop than anyone not named Duggar should be exposed to.