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.


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.

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.

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.

This is not the post I expected to be writing today

So, for the last week to week-and-a-half, I fully expected that today I’d be posting something about how we’ve been sent home where we’ll be meeting with doctors and school officials and whatnot to establish the next couple of months’ worth of care.

Well, I couldn’t have been more wrong. The following is a little more detailed than it needs to be probably — but it was one of those days where all the details mattered — and we were left feeling like ping-pong balls bouncing around, so we might was well share a bit of that feeling.

The morning starts off with the us at the clinic visit waiting to talk to the person who’d be giving us most of the “here’s the nitty gritty” about that aforementioned establishing. Only to hear that she’s not meeting with us today, she’ll see us Tuesday. Which really isn’t how you want to find out that your plans have been changed on you. At this point, we’re annoyed — yes, we knew it was possible, but not probable; yes, we signed on for this and were game for whatever; but we want to go home, and it seems like the reasons for keeping us here are for a couple of tenths of a point on a lab result that we can get just as reliably back in Idaho as we can here.

Then the nephrologist comes in and she’s prepared to send us home today, assuming the labs look like she think they will and she didn’t know that wasn’t in the cards. So she makes a call and tells us that we’re staying because everyone wanted to be sure that a pain Machen had last week had been resolved. It was news to the nephrologist that it hadn’t been — news to us, too. What pain? Don’t worry about it, it was such a minor blip, I didn’t even bother to mention it here (and I was more concerned about it than the surgeon). So, we’re back to maybe thinking (probably wishful thinking) that we might get the green light today.

The nephrologist does her regular exam, tells us everything looks fantastic and starts typing her notes — at a couple of points, she stops and asks a question or two before carrying on. One of these questions, it turns out, was really important. She finishes her notes and tells us that she’d like us to get an ultrasound. To us, this seemed like something routine, and that it was one last thing we had to do before being sent off.

Machen gets the ultrasound — it takes 30-ish minutes and is frankly a lot more interesting to watch, but far less emotionally gripping and nowhere near as fun to listen to, than one of a pre-born infant. We’re sent back down to the other end of the hall to wait for the nephrologist to send us back to the Ronald McDonald House (which I haven’t mentioned before, and I should fix soon) or home. After longer than we anticipated, the nephrologist comes out and asks if she can speak to us in one of the exam rooms.

Two thoughts occur to me about the same time:

  1. That’s what we’ve been waiting for
  2. Well, this can’t be good.

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.” Which, coupled with our answer earlier that he’d never had high blood pressure before the transplant, got her to order the ultrasound. Essentially — and she showed us a lot of ultrasound pictures to illustrate this, and then decided to draw something which was a lot clearer on the exam table paper — the blood is moving through the artery at a rate of 160 something per second, but then when it gets into the kidney it moves at 280-330 something per second. That increase in speed may indicate a restricted or obstructed blood vessel in the kidney. What this means, she’s not sure. What the next step is, she doesn’t know — testing, more imaging, who knows. How serious this is, she doesn’t know. She’ll talk to the surgeon and call us later.

She stressed that the kidney is functioning fine, and actually the lab results from this morning’s draw were probably the best he’d had yet. There might be another tweak or two to the medication that we’ll be informed about this afternoon. Basically, we’re just supposed to go back to the RMH and not worry.

Yeah, no problem.

Now, about this time, someone returned a voicemail I’d left on Monday — it was absolutely the right time and a very pleasant distraction. I’ll tell you about it in a day or two, when it’s a complete story. It’s going to be a fun one.

Honestly, at this point, we’re not freaked out — the nephrologist has this incredibly calm and reassuring demeanor (she was the one who started calling the kidney beautiful). My wife and I are pretty sure that if it was any of the other doctors we’d dealt with here who’d said the exact same things she said, we’d be fretting, we’d be complaining that they hadn’t answered our questions more clearly or definitively. But somehow, she can get away with it.

We’re not happy about the delay, but this is one of the things we’re staying around for — making sure that the kidney is fine and working okay. Yeah, we were grumbling when it seemed like a misunderstanding was keeping us here, but for this? No complaints — just wondering what our next step is.

A couple of hours go by, and we get a phone call from the nephrologist. The surgeon and a different radiologist (one who spends more time looking at blood vessels, apparently) have decided that it’s not a concern at this time, and they see no need for further testing or imaging or anything as long as his blood pressure stays where it is. Nice little caveat, eh? She didn’t stress that part, but I’ve been ruminating on things for a bit. Oh yeah, and she made a tweak to the one medication getting the most fine tuning. Because, of course.

Anyway, assuming every thing is pretty much the way it was when we left the clinic visit this morning on Tuesday, we should be headed home then.

Stay tuned.

The Most Horrifying Illustration

Since the day of the transplant — Machen has had many, many things explained to him through illustration. This is a smart way to do it — too often, I think he’s missed out on what various medical types have told him through the years because they just tell him things — sure they go out of their way to define terms, etc. But you can’t tell an 11 year old a bunch of medical truths and expect it to stick too well.

Some of these illustrations have been helpful, others less so. Some have been best for kids younger than him (yet, those are super easy to remember). Some have even helped his mother and I grasp something better than we had before.

But at clinic yesterday, we got one that was truly terrifying.

We’ve been told for over a year that he’d have to drink a lot with the new kidney — the dietician even told him to start drinking 2 liters a day then so he’d be used to it. An adult kidney needs an adult amount of liquids a day to stay healthy, is essentially what he was told.

At clinic, the Nurse Practitioner gave us a new illustration to explain why she wanted him to get 3L a day in. It’s like a plant, she said, when you water it regularly, it’s nice and green and grows. But if you forget, the leaves start to droop, it gets a little brown . . . but if you water it again, it gets back to green. But if you end up on a cycle like this, eventually, the leaves still droop a little, even with water. It doesn’t bounce back as green as it used to. And so forth. The kidney is like that, you keep it going with 3L in the heat, a little less during the rest of the year, and it’ll be fine. Forget that a few days, it’ll get worse, then bounce back, etc. just like a plant — eventually, this will hurt the kidney.

Good illustration, easy to wrap your hands and brain around, etc.

But here’s the problem — do you have any idea how many plants my wife and I have killed? The three non-grass plants in the front of our house have survived by sheer force of will (I think one of them might technically be a weed, but it’s big enough that it passes as a weak bush) — not because of our work. Every other plant we’ve come across is dead. We can’t take care of plants, we’re the equivalent of Jeffery Dahmer and Aileen Wuornos to plants. Shrubbery, evergreens, flowers, vines, flytraps, cacti, philodendron — you name it, we’ve killed it.

If taking care of Machen’s kidney is the equivalent of taking care of a plant? He is so doomed.

I’m just going to throw this out there, because sometimes people I’m related to worry that readers may not understand my sense of humor. The two paragraphs are me having a little fun with the illustration, just joking.

Mostly, anyway. I mean, we are that horrible with plants. We have black thumbs, no hint of green at all. But kidneys aren’t shrubbery, or houseplants, or anything. We know that.
Continue reading “The Most Horrifying Illustration”

The New Condition

One of the helpful things that Machen’s Hospital Social Worker and/or his Transplant Coordinator said* was that in many ways we’ve spent the last 14 years learning to deal with the disease of kidney failure, and now we have to learn how to deal with a new medical condition: Transplant Recipient. It’s an entirely new skill set, different rules (many that are flat-out contradictions of the previous ones), different stakes. We’ve been trying to keep the failing one going, now we’ve got to keep a healthy kidney healthy.

Which, for the next few weeks anyway, means not going into overly-populated places. Wearing a face mask while in public (which means no restaurants, etc.), washing your hands more often, using antibacterial lotion like a wanna-be Adrian Monk, etc. There’s a whole host of physical activities he can’t do for a few months (including vacuuming, he’s so not depressed at all) — and a smaller list that will be permanent no-nos. At the same time, as the Social Worker reminded us, “We don’t transplant you to live in a bubble.” It’s just a little bubble-ish at the beginning.

We’ve got diet changes to make — for the first time ever there are actual foods to avoid. There’s a nice side to this, many people have tried to be nice and hospitable and take into account any special dietary needs he might have, and have always seemed confused/nigh-disappointed when we said he didn’t have any (I get it — and always felt kind of bad that we couldn’t inconvenience them). We have some now!

  • Grapefruit/grapefruit juice
  • Pomegranate
  • Mandarin oranges (includes tangerines, clementines, satsumas)
  • Starfruit
  • Sushi or sashimi (unless cooked like California Roll), other under-cooked meats, eggs, poultry, etc.
  • Unpasteurized anything
  • Probiotics or probiotics containing foods (no kombucha for him, which is a debatable loss)

Not that we had to say a hard no to some foods, but he was supposed to limit his phosphorus intake before — now, he needs extra! We’re also dealing with something new along the lines of his food — he wants it. He has an actual appetite on a regular basis now (this may be partially a side-effect of some of his medication, we’ll see).

The biggest change (so far?) is in the realm of medication — in the past he’s been on just a couple of regular medications — plus a supplement or two. That’s another thing that’s surprised people (including some medical professionals, mind you) — he really never required that much. A couple of things to help his body process certain types of food. But now? Well, here’s his pill container for this past Wednesday:

Not a bad haul, eh? The morning is on the left, evening on right. The number of pills will fluctuate a bit for the next couple of weeks, and then start tapering off — hopefully, nine months from now, it’ll just be a couple of medications. Essential, twice a day, until this kidney stops working, medications. He’s learning all about his medication, what they’re called, what they’re for, and is starting to work on what the side-effects will be — he’s going to be an expert on them before we leave Portland.

Which is what we’re here for — to fine-tune the medications, give him a bubble-ish atmosphere, and to make sure that things are looking good for the kidney before we head back home. We’re not just laying around working on our tans (actually, he’s more likely than most people to get skin cancer now, so he’s under a thick coating of SPF2000 anytime he goes outside).

I started this post thinking it would be more amusing, but I forgot what anecdotes I had in mind. So hopefully it’s a little informative anyway. It’s hard to chronicle a lot of this — 0830 had blood drawn; 0900 took pills with a small snack; 1000 returned to the hotel room; 1330 got a call adjusting the dosage on pill X; 2100 took pills with a small snack. But I also know that we’ve got a lot of people wondering what’s going on with Machen. So hopefully, this is a start.

If you have any specific questions, by all means — email us, or leave a comment. Would enjoy getting to respond!

* They both said many helpful things, and we’re honestly not sure which one said this one — quite possibly both of them said a variation on this