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.

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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.

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

Another Tip of the Hat and Thanks

I mentioned this a year ago, but I wanted to talk about the graphics we’ve been using here.

Both:

the Old, Sick One:
and the Shiny, Healthy Recycled One:

are the handiwork of my work proximity associate, VX Blackthorne, and I wanted to give him another public Hat-Tip and Thanks for the nifty graphics. If you have a need for something to be drawn for your website/shirt/whatever, you should look him up and give him some work (and money).

The Transplant Department here has a very similar set of graphics on their educational material that we were given last week. I had to laugh when I saw the cover. Theirs is like 5% more anatomically accurate — but Blackthorne’s is at least 47% better artistically.

Anyway, thanks again, man, I love your stuff!

One more thanks due

I’m keeping this separate because I don’t want to accidentally taint it by any levity from the other.

In the midst of our joy and celebration, I can’t stop thinking about the family on the other side of this – they’re going through one of the worst weeks of their lives now, because someone who was hale and healthy just a few days ago, has met with some sort of calamity and is dead. It’s ugly, it’s wrong, it should not be the case.

Yet, we are here in the hope that a little bit of good can come from this.

We’re praying for this family – that the God of all comfort will grant them peace in this time. Actual peace – the peace of the gospel, the peace of the Spirit.

From what we’ve been told, they know a tiny bit about Machen — we’ll get the opportunity to tell them more and express our gratitude in writing in the future. Maybe we’ll hear back, maybe we won’t. That’s up to them.

I do know that if we could put our son back on the waiting list if they could get their beloved back — we would. I do know that things don’t work that way, so it’s easy to say. Still.

The best we can do now is to be grateful and to take care of this kidney. For us as parents, and Machen, to do everything we’re supposed to do to keep it healthy and productive. We cannot — dare not — waste this gift. It’s not much, it’s not enough, but it’s all we’ve got.

Some words of thanks…

Been thinking a lot today about everyone who has helped us get to this point — especially this last week, and figured I’d publicly thank a bunch of those people. I know I’ve left off too many. But I tried to get everyone. If anyone’s offended that I didn’t name you, I assure you, I’m more embarrassed by the oversight than you are offended.

Mega (and very sincere) Thank Yous to:

Doernbecher Children’s Hospital and OHSU, who have some amazing medical and support staff — and even the less-than-amazing ones are top-notch. We’re keeping a list so we can do something for them later. But just in case they’ve got someone checking teh InterWebs for mentions of their institutions — we love the people here.

My sister and the fellow church member (anonymous per request) who were ready to participate in a paired exchange on Machen’s behalf. We owe you so, so, so much just for doing what you’ve done so far in this process. We don’t have the words — or any other ability — to express our gratitude enough.

Machen’s siblings and grandparents back home for taking care of so much for us — not to mention their texts/calls/etc. helping us through the last few days (plus the 14 years and change of help getting us to this point).

The rest of our extended families — cousins, aunts, uncle, great-aunts, great-uncles, grandparents, late great-grandmothers — who have helped in all sorts of material, psychological, spiritual ways.

Machen’s school for their support and encouragement (and the work they’re going to have to do to accommodate Mr. No Immune System in the future).

Our brothers and sisters in Christ at Nampa URC — you’ve asked questions, offered assistance, helped with funds, encouraged us and (most importantly) prayed for us for years. Thank you. (Same for the brothers and sisters in other congregations and literally around the world who have done this — for example, I’ve been reminded recently of one brother in AZ who spent more than a few late nights/early mornings talking all this out with me 14 years ago, and got me through a couple of dark nights)

Our super-supportive bosses and coworkers for allowing and putting up with the disruption this has caused — sure, they’re technically legally obligated to do so, but we’re pretty sure they’d have done it anyway.

Everyone who has/is/will contributed to the GoFundMe. Seriously — you made this possible.

The nephrologists and pediatrician who’ve got us this far (and the pediatrician who will watch over things in the future) — I’ve already talked about you in previous posts, so I’ll keep this short. Wow. You set the bar pretty high for medical care when it comes to Machen. When people fail to meet our standards in the future — it’s your fault.

Kinai — just because.