Roller Coaster of Kidneys

One thing that I’ve learned about kidney transplants in the last two weeks is that there isn’t just one approval, there’s a zillion of them.

Two weeks ago, it was the approval from the Kidney Transplant Clinic’s board deciding to take on my surgery after reviewing about a dozen different tests from both myself and my donor.

Then a few short days later, it was the financial authorization from my insurance agreeing to actually pay for the half a million dollar, lifesaving surgery … which almost threw a hiccup when they said they wanted me to redo a bunch of testing as well as some new testing, only to go ahead and approve it anyways a day later!

Today’s round of approvals were in the form of pre-op testing where I had to redo a select handful of tests to make sure that nothing has changed that could impact the surgery … and thankfully, nothing has so far.

The next two weeks are kind of a quiet period where theoretically nothing should happen, but I have to be on high alert and let them know immediately if anything at all changes with my health. It’s also not the time to go out and get a shiny, new vaccine or change my meds because everything hinges on the snapshot of me in this moment.

And then one week prior to surgery, my donor and I will both go in for one last blood draw to verify that we’re still a match with tissue typing and a bunch of fancy biology stuff that was well beyond my aptitude in college.

Then comes the transplant itself.

It’s definitely starting to get all the more real the closer we get. Today I met with several different doctors and nurses on the team and went over everything from what to expect from the surgery, recovery, and beyond. It’s … alot … to the point where I think it’s important to quantify it not as reaching a goal, but instead getting over one hill with another new one to challenge me right on the other side.

One described the recovery process by saying, “I don’t expect for you to feel better on day four than you do today, however by week four I expect you to say that you feel much better than you do today.”

And I can accept that – in essence, I’m trading one set of challenges with dialysis and fatigue and exhaustion for another set of my body learning how to use this new organ without trying to kill it, while also physically recovering from having my belly split open.

It does sound like they will not be removing my giant, old kidneys at this stage – namely because it’s too dangerous to do everything at the same time, however I’m still hoping that we can revisit the topic once I’m healed so that I can give exercise and good health a real, honest shot this time. Baby steps…

I’ve been thinking more about the impact and what this transplant means to my future so that I can try to put it into words for my donor before the actual surgery. No idea how my wife or I are going to get through the time leading up to the OR without crying, but I think in truly profound moments such as this, that’s to be expected. If I can hold back my tears while I’m saying goodbye to the kids so as to not spook them with the inherent risk of surgery in general, that’s good enough for me.

We also desperately need to get this house cleaned before then so that I don’t have tripping risks every three feet when I come home, so that sucks!

Passion & Emotion & Art

I stumbled across Yungblud about a week ago when I was listening to some of the acts from Black Sabbath’s farewell tour. He did a show stopping rendition of Changes, which eventually led me to download his latest album, Idols, which in turn I’ve been pretty much listening to non-stop since…

One of the things that really appeals to me about his music is how you can hear and feel the emotion that went into the songs. I’ve listened to a handful of interviews with Dom (the artist) and he’s refreshingly upfront in talking about his mental health and trying to improve himself, and it really comes through in the music, too, as he takes on some tough topics like child abuse and depression and one of my personal favorites – change.

I guess I relate to this song as I feel myself facing some pretty big changes in my life with the kidney transplant, among other things. I love how the words talk about welcoming change and what it brings to our lives instead of dreading it like most of us do. It’s a really upbeat rhythm that I find myself listening to in the car a lot as I drive back and forth to dialysis.

It takes a lot of guts to put yourself out there like this album does, scars and all, to say this is how I felt yesterday, and this is how I’m feeling today, and that’s ok because I’m a work in progress.

I haven’t dove into his back catalog yet because I’ve heard that the music is much different than this one and I’m so in love with it, but I’m still looking forward to seeing what else is out there even if it doesn’t wind up in my general rotation.

Kidney Progress!

It’s official – I now have a date for my upcoming kidney transplant!

Right now I feel all sorts of emotions, which I suppose I have the next month to do my best to sort out…

I’m nervous about the surgery because this is by far the most complicated and longest procedure I’ve ever had done.

I’m anxious about processing those fears and setting my kids’ expectations without scaring the shit out of them … or myself.

I’m grateful for the generosity of my donor for gifting me something that I could never possibly repay.

…not that it’s expected, but it’s still a massive concept to wrap my head around – the idea that this person is willing to give me a part of themselves in order to give me a better future with my family.

WOW.

If the tables were turned, I’d like to think that I would do the same, but I don’t know. There are plenty of people in my life who didn’t offer to donate and I can’t fault them for that at all because ultimately it’s an immensely personal choice that one can only make for themselves.

Like I said, lots of emotions swirling around my head right now, but that’s what time and reflection and therapy are for!

Only 14 more dialysis sessions to go…

Dude, Where’s My Gallbladder?!

As of Monday afternoon, it’s no longer in my body. I don’t want to jinx it, but so far my infection symptoms haven’t returned and I’m officially one step closer to my transplant!

My middle is pretty sore and I’ve been relying on pain meds to sleep at night, though as much as I groan, I’m sure this is nothing compared to the recovery from when they fillet me open to play with my kidneys.

Still, I’ll take it if it means moving closer towards normalcy – at least for a little while.

I really miss swimming with the kids, namely because it’s getting hot and it’s such a great way to both unwind and enjoy some time with them at the same time. Lately they’ve been bugging me to let them go in the pool and I’m sure I will eventually, but it’s just not the same sitting on the patio (and sweating!) while they’re splashing around, having a good time.

Believe it or not, I also want to exercise again. Well, sometimes. My body has gotten really sore just doing basic things and I want to start working on that, but there are so many barriers right now between time and having a clear floor to do it and having the energy to do it. I’d like to start with just some basic stretching for now because I know that swinging kettlebells will be a ways off between this surgery and the big one, but I need to get past this place where I just groan and have to take a minute whenever I go to stand up!

My goal is to repurpose some of my dialysis time for an exercise routine after my transplant, even if it just means walking around the neighborhood or spending time on the elliptical. I’ve even thought about getting one of those walking pads for my office, though I don’t have a standing desk so it might be a waste.

All in all, I’m trying to maintain my calm and take things one day at a time, but I’m also really anxious for the next step so I can feel like I’m truly moving forward with all of this! That said, I’m grateful that I even have the options that are in front of me … I still haven’t wrapped my head around another person giving me one of their organs, and maybe I never will, but I know that it’s a big deal and one that I’ll spend the rest of my time trying to live up to and be grateful for the sacrifice.

Things I Did This Weekend, 4/5/2025 Edition

  • Got about halfway through 3 of 99 tasks around the house…
    • Have I mentioned how much I hate cleaning?! Probably more times than anyone can count, and it’s only gotten worse as my health has made it harder for me to go without frequent breaks and whatnot. I made a list of everything that needs to get done and admittedly, it’s very big! I’m trying to include the kids wherever I can because if we can train them to actually throw things away and clean up after themselves, in theory it should only make things easier in the long run!
  • Spent way too much money on auto repair parts.
    • Seriously, a new set of wipers for both cars set me back, like, $90! I mean, sure, the shop wanted $75 for one car, so I saved money there, but I still have to muster up the ambition to actually install them … which is easy, if I get around to it. After dropping two grand last week on new tires and brakes for the van already plus another $500 expected for the airbag replacement (stupid pothole), I’m trying to find little things like changing the wipers and air filters that I can do myself. It’s just a pain when everything ends up taking longer than you were expecting…
  • Case in Point – Exhibit: Sprinklers.
    • I hate dealing with these every spring because there’s no good way to fix them without getting dirty and soaked, but I also hate the local sprinkler repair guy because last time I hired him, he only did half the job and when I called him on it, he said he’d be back in a month to finish it when he was less busy! Admittedly I’m learning more like paying attention to the orientation of pipe connections that I’m buying and trying to replace just the broken parts without swapping out the entire head. Still, it drives me nuts how much the whole system has sunken into the soil because it’s a pain in the ass to raise them back up. I read a post about someone fixing this by burying a brick underneath the pipe connection, but that sounds like a next year project at this point!
  • Watched Captain America: Brave New World.
    • I didn’t really care for it, namely because I think the whole mind control concept is about used up in the MCU and I didn’t really care how Red Hulk was implemented. Spoiler Alert – Why do we only get to see him at the end? And how does he know all of the Hulk’s signature fight moves if he’s never fought before???
  • Started playing Final Fantasy IV: Ultima Plus.
    • This is basically a cleaned up version of the Ultima romhack that I already love – they fixed a few bugs and updated a bunch of dialogue, so I decided to give it another play through. I honestly don’t remember where I left off with its predecessor, but right now I’m underground and getting ready to storm the Lower Tower of Babil – still a ways to go before the character selection opens up, which is my favorite feature, but I’ll get there this week, I’m sure!
  • Still waiting for medical stuff…
    • And last but not least, my gallbladder surgery is a week from today, which is step 1 of 3 towards my transplant. Step 2 will be a stent removal a few weeks later, followed by final clearance from my Infectious Disease doctor to confirm that we finally got this bastard infection that’s been plaguing me for the last 2+ months! Baby steps are still progress nonetheless…

One More Thing, Vacation Edition!

This would’ve been really neat – if it had worked…

Occasionally when we travel, I’ll remember to bring along the cables needed to wire up an iPad or my laptop to the TV in our room so that we can watch something on Plex after the kids go to bed.

This was not one of those occasions, however I was pleasantly surprised to see that Disney added a wireless option where (in theory) you can stream from your own device directly to the TV via Chromecast!

I say ideally because I fought with the thing on and off for about an hour and never could get it to work. The Chromecast connection itself was fine and you could in fact see my screen mirrored on the TV, however best I can tell is that Disney’s guest wifi simply isn’t strong enough to maintain consistent bandwidth both to my device (from my Plex server back at home) as well as to the TV (from my laptop to the TV) at the same time.

I tried lowering the video quality, which worked a bit, and eventually downloaded the movie file to my laptop to eliminate one of the streams, but it just wasn’t cutting it. Ironically, the next night we broke down and signed up for a month of Disney+ so that we could watch some of the new Daredevil reboot and that streamed just fine, although I didn’t check but for all I know maybe there’s a data connection for the TV channels that also carries Disney+ to ensure a good signal there!

It’s still nice to see them making tech improvements, even if they’ve still got some more testing to do. 😉

Vacation Reminders…

Last weekend Sara and I snuck off without the kids for what was supposed to be a quick getaway prior to my kidney transplant. At this point, we’re looking at probably July at the earliest for said surgery, but the vacation was already booked and parents always need a vacation, so we went anyways…

We ended up at Animal Kingdom Lodge over at Disney World because we had some DVC points that were about to expire and that was the best choice for what we had. Even though I really love the aesthetic at Beach Club, AKL is probably my favorite Disney resort because it’s so unique, the animals are fun to watch, and there’s plenty to do without actually leaving the resort. Which we basically did, save for a few hours at Disney Springs to buy some Legos and go see a movie!

That said, this post isn’t really about my vacation as it is things that I learned/realized on my vacation – a lot of which revolved around my health because let’s be honest, I’ve been in and out of the hospital FOUR TIMES in the past couple of months and I’m not exactly at my peak physical condition by any stretch of the imagination…

I get tired really easily these days, meaning that physical exertion is rough – anything from taking out the trash or gathering clothes for the wash to walking from one end of a hotel to the other. My kidneys are HUGE to the point where they’re pressing on the rest of my organs and make it hard for me to breathe deeply, so I get winded far more easily than a father with three young children really should.

This was ok on this particular trip because it was just the two of us, so we could take breaks and catch our breaths as needed, yet the whole time I couldn’t help but think that the same activity or more with the kids really isn’t possible because they’re not going to want to sit around and wait when we’re running around a theme park! The last park we actually went to (Legoland), I had to rent a scooter, which was a big, old helping of humble pie but necessary for me to make it through the day.

That said, I managed to walk more in the last three days than I have in a long time – about 16,000 steps – compared to maybe a thousand if I’m just stumbling around the house.

I really want to commit myself to doing more of that, both before and after my kidney surgery, because I want to be able to take my family on a vacation for multiple days where we spend considerable time in the parks like we used to and not feel like I’m ready to die afterwards!!!

The other aspect of this, and it’s something that we both felt throughout the weekend, is that we miss going to Disney World. Aside from little half-trips where we’ve gone to either just our resort or other things we can do on the cheap, we haven’t taken our kids to Disney proper since David and Matthew aged out of their free tickets (at 3 years old, I believe?).

They’re eight now, so that’s five years without monorails and fireworks and photos with characters, and granted, I’m still very bitter at how expensive everything has gotten over there, but if money wasn’t a factor (along with my health), I have a feeling that we’d be over there a lot more often again, giving our kids memories like the ones that helped to grow the first half of our relationship together!

So those are my two challenges – health & money – and even though I’ve got a ton on my plate this year, I really want to try to make progress towards both of them because I think that in the end, my quality of life and general happiness will only benefit from them.

More to come soon, but for now here’s a cool picture of two giraffes!

Things I Did This Weekend, 3/16/2025 Edition

  • Transferred my Google Workspace accounts from Squarespace back to Google.
    • This was something they forced on us when Google sold its domain business to Squarespace, but I don’t really care for them, so after migrating all of my domain names to Cloudflare earlier this year, I finally found it was surprisingly easy to move them back to Google. Follow these instructions because Google’s are confusing, but you basically cancel them through Squarespace and then they’ll revert to Google, where you have like a week to setup new billing directly through them. It took me about five minutes for two accounts!
  • Fixed an issue where one of my WordPress installs wouldn’t send out emails anymore.
    • Apparently it’s common now for people to use an external SMTP plugin to send out notification emails from WP, whereas I was used to it always just using the PHP mail() function by default. I guess when I moved said site to an updated VM last year, the function was disabled and I didn’t notice until months later. Anywho, I really didn’t want to spend any money on something so simple, but the above plugin has a free version that should be sufficient for now and I was able to apply for a free/trial account through Mailgun for a limited number of emails sent per month, which should be fine … so yay!
  • I fought COVID and am hopefully winning!
    • Spent Tuesday night in the hospital after probably catching it at Legoland over the weekend, but thankfully they sent me home on steroids the next day and I’m already feeling much better.
  • Got our taxes filed.
    • Hard to get excited about that one, but – check.
  • Oh yeah, and I started a new game of Crystalis, too!
    • I love this old NES game from 1990 for very nostalgic reasons, though it has some friction points now that are a little frustrating. The grinding seems excessive because bosses are level capped, meaning if you attempt them below their level, you just can’t damage them no matter how good you play! That and apparently playing on the RetroPie, somehow my select button got keyed to reset the game if I accidentally hit it on certain screens, so I definitely need to look into that because I literally had to redo the poison swamp outside of oak like four times because I would finish it and try to heal, only to be faced with the title screen unexpectedly! Ugh, but still fun…

Visiting the Legoland Hotel!

As I mentioned last time, we were planning a short, little vacation to Legoland for some homeschooling fun followed by a night in the iconic hotel that towers over the entrance to the park. I wasn’t really sure what to expect of the hotel because the price seemed a bit high for what I figured was a mid-level stay, although admittedly I’ve only paid for theme park hotels a couple of times in the recent years after we joined Disney Vacation Club around the time that the kids were born, so I don’t really have a good gauge of what pricing should be for this type of hotel anyways…

A quick look at Disney’s current moderate pricing falls pretty close to the $375 that we paid for the one night’s stay, which did get us out of paying $35 for parking at the park that day, so that was a nice surprise!

Anyways, on to the fun stuff because overall, we all had a really fun time at this hotel!!!

There are pits of bricks everywhere for the kids to play, including in the lobby when Mom & Dad are trying to check-in! Also nearby is a giant castle/pirate ship structure for them to play around, which we found also served as a stage for a little “character show” before bedtime that evening…

We also soon learned that the elevators play disco music, complete with the flashing lights and everything, as they’re moving, so there’s that!

Of course, the real treat was inside of the rooms because I was pleasantly surprised to find that the Lego structures weren’t limited to downstairs in the lobby, but our room itself had a number of them glued to the walls and even some larger, 1-foot creations on shelves and whatnot around the room. We chose to stay in an Adventure-themed room, which put all of the decor around themes like Egypt and Indiana Jones – kind of a neat touch because the kids just studied Egypt and the pyramids in school.

While we were getting settled and taking a load off after a fun, but tiring day in the park even with my electric scooter, the kids’ own explorations led them to find a scavenger hunt that had been left for them! Pretty simple, but they had to answer three questions – each of which gave them a number – which ended up being the combination to a lockbox in the room that held a Collectible Minifigure and a juice box for all three of them, so I thought it was cool to see that they made sure to account for the number of kids in the room and not just throwing a default number of prizes in the box when they cleaned!

I think the only negative point I can give the Legoland Hotel, unfortunately, is for the food because A) although we planned on dining at the buffet restaurant (Bricks) that night to give the kids some variety, apparently it was closed for low attendance, which isn’t really fair when there are only two places to eat to begin with, and B) the place we did eat (Skyline Lounge) was kind of lackluster, which is fine for kids who only eat chicken fingers anyways, but especially after a long day where I only got a generic burger for lunch, I enjoy being able to eat something a notch up for dinner and even grab a nice dessert to take back to the room for after the kids are in bed.

The menu at the Skyline was really just meh to me, like I had to stare at it for a while before I finally settled on some pasta special that was kind of like a bolognese with a couple of meats in it. It was fine, but nothing to get excited about, which frankly is important to me when I know I’ll be dropping over a hundred bucks on the meal … especially when even lunch had been surprisingly expensive compared to fast food outside of the park, too!

And sure, we haven’t spent a lot of time in theme parks lately, but these are kind of a big part of the reason why because they are getting rapidly more expensive so at least if we drop that kind of money, we want to feel like we’re getting our money’s worth!

  • Park Tickets – We got a great deal because it was an educational day, so that was nice!
  • Disability Scooter – My scooter literally cost me twice as much as I paid for my admission ticket, so that’s a big hit if you need one every day.
  • Food – Both in and out of the park, expensive and forgettable.
  • Hotel – Seemed a bit high, but incredibly enjoyable audience and I’ll budget for it to come back again!

As an additional frustrating side note, the gift shop in the hotel was incredibly small, which meant no bedtime snacks unless we raided the vending machines … and I did with Christopher and David’s help, although at $2.50 a pop and even more for drinks, I don’t even want to know how much I spent on vending machines that night! Admittedly, if there was a candy/dessert store nearby like we often frequented at Disney, the damages would’ve been equally high, so there’s that.

The next morning, we tried Bricks again for breakfast, which was advertised originally as a breakfast buffet but instead was served on platters family style. The service seemed kind of slow, knowing that we needed to checkout soon, and although the selection was decent, my wife’s tea was cold and came without a serving spoon, which was almost as annoying as the wobbly leg that we had to contend with on our table the entire meal.

It probably helped that breakfast was included and only cost us for the tip, but the kids devoured the french toast sticks and bacon, and I had a bit of everything that they left behind, so it definitely faired better than the night before. Would I have preferred something custom-made like a nice buttermilk pancake platter or my personal favorite, Egg’s Benedict? YES! They had an upcharge option for a few kinds of omelets, but by that point we really just wanted to eat and get on with our day.

Once we had cleaned up all of the sets that everyone had started building from the night before, we checked out and just let the kids play around the lobby castle for a while so that we could decompress. Two of them eventually found the little “theater” that was playing episodes of Lego Dreamzzz, so they enjoyed laying in the beanbags watched that for a while until we wandered outside to play mini-golf.

I can’t really fault Legoland for the mini-golf – their course was small, but fine, and had more Lego models spread throughout the course – but the kids were antsy and didn’t want to play a real game, so eventually we just let them play ahead and tried to enjoy a few holes to ourselves before cutting the game early.

Patience is not a virtue for elementary schoolers, so after a quick walk along their pretty nice boardwalk on the lake, we headed out and called it a trip.

It wasn’t a long vacation, but it got the family out of the house overnight which is something we’ve sorely been missing since I started dialysis last year. All of the kids already want to go back, both to try out the pirate hotel as well as the other themes in the main one, and I can’t disagree that it’s always a nice escape after a theme park day to not have to head right home afterwards when you can extend the magic a little longer, even if it did result in spending an incredible amount on Lego sets for the five of us!

Except for the food, I’d give it an 8 out of 10 overall, and we’ll definitely be back again. 😉

Yet Another Dialysis Update…

So where did I leave off???

I guess I’ve been doing hemodialysis for a little over two months now, which seems like a drop in the bucket for some folks who’ve been going through these motions for years and years. I try to say that it’s not that bad because I’m surrounded with so many examples of people who have it worse. Granted, a lot of them are older than me, but every treatment day I see people in wheelchairs and people struggling just to remain conscious during their sessions, freezing under piles of blankets whereas I sweat like crazy and spend my four-hour stretches working or writing or just entertaining myself on my phone…

…yet I can’t deny that it’s affecting me, too.

After my sessions I’m pretty tired. Sometimes I make it until bedtime and can pass the time playing video games or watching something with the kids, and sometimes I tap out early.

My off days are typically pretty good, except that I get winded so damn easily now – literally bending down to pickup clothes for laundry or putting away dishes will require breaks in order to finish the job! From what I can tell, this is mostly due to my ginormous kidneys limiting the amount that my lungs can expand in my body, which is a really weird problem to have, knowing that at this point no amount of exercise can help to improve it.

Hell, I don’t even really know how overweight I am anymore because so much of my gut is taken up by kidneys!

On that front, I’m still sort of hoping that they’ll take the bad ones out at the same time they’re putting my transplant in, but it’s really up to the surgeons and apparently they prefer not to if they can help it, so we’ll see what happens there.

In other news, I spent a week in the hospital recently because somehow I managed to get sepsis. We’re still not really sure how/where it came from because they took a few cultures that all came back negative, but they removed my old PD catheter as a precaution while I was there and gave me a ton of IV antibiotics, so I’m mostly feeling better from that angle now.

Going through it, I honestly didn’t realize how dangerous sepsis can be – particularly for somebody like me with kidney issues … apparently between that and being on dialysis already, we were really lucky to catch it as early as we did. Left on my own, I thought it was just a bad cold or something because it kind of came out of nowhere – I was working on Friday afternoon and suddenly started getting chills and feeling lightheaded, so I went to lay down for a bit. I tried to get up a few times on Saturday, but would make it like 20 minutes on the couch before heading back to bed.

Sara said that I also seemed to be staring off into space or having trouble sounding coherent, so late that night we finally went to the ER where they ran a ton of tests, gave me dialysis because I had been too sick to go for my session that day, and then ultimately admitted me to a room for the next six days.

I started feeling “better” maybe 2 – 3 days in, but they kept me for tests and surgery for a few more.

That was maybe two weeks ago, and I’m done with my antibiotics, though I’ve read that sepsis can take a while to fully go away. I mostly feel better, but again, I’m starting to acknowledge how my better has definitely receded from even where it was a month or two ago. Case in point – we’re taking the kids to Legoland on Thursday with our homeschooling group and for my first time ever, I’m renting a scooter to help me get around the park.

I’m not super happy about it, but knowing how a trip to the grocery store can put me out of breath, I’d rather be safe than sprawled out somewhere in the middle of Mini-Land, sending everyone into a panic instead of being able to enjoy their day. I don’t really plan on going on any rides anyways, but watching them is half the fun at this point and it’s been so long since we’ve been that I know they’re all extra excited to go again!

Admittedly a lot of my life right now is hurry up and wait because I’m hoping to do my transplant sometime in May, so in the meantime weeks go by three dialysis sessions at a time and I’m just doing my best to have a few other things to show for it before we take on that new challenge that will no doubt dominate my life for at least a few months to follow.

The other night I was talking to the kids about everything. I try to be as honest with them as I can about my disease without letting it get too scary, but we were talking about whether they’re going to get it, too, and Matthew asked if he had to have surgery, “Could I tell the doctor to make the cut small in his belly because he doesn’t like cuts?” and it was so hard to fight back the tears and try to reassure him that hopefully they won’t have to deal with it at all … but that right now they’re still way to young to have any idea whether it will present itself or not.

It didn’t really present itself to me until my mid-30s and for a few years it was just high blood pressure warnings, then the last couple of years it went crazy and here we are. It’s not something that kids should even have to think about, yet they’re already seeing me doing dialysis each week and know that they don’t want to go through that themselves. I think deep down in their own ways, they sort of get how dangerous it all is, which pains me because kids at that age should be able to think that their parents are invincible.

The best I can do is keep my head up and let them watch me beat this thing to give them back some of the hope that having a disabled father has robbed them of, which is no easy task. But nobody ever said parenting was easy, anyways…