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…
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.
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!
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…
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.
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…
To follow up on my last post that I made just before Christmas, I did end up getting that new catheter only two days prior to Santa’s arrival, and actually immediately followed up with my first session at the dialysis clinic to put my new tube straight to my heart to use!
It was scary, although the day went by so fast I didn’t have a whole lot of time to be scared.
…except when I was laying conscious in the operating room because they didn’t put me under like I thought they would…
…and the four hours I had to listen to beeping the entire time, most of which was other people’s dialysis machines peeping although some was definitely mine, too…
Needless to say, I’ve learned a lot about hemodialysis over the last handful of weeks, things like how problematic clotting can be and not necessarily just in me, but also inside the machine itself; understanding low blood pressure, which happens as a result of removing fluid but being someone with traditionally high blood pressure, hasn’t been something that I’ve really had to think about; and of course, figuring out and knowing my limits with treatment.
This last one was never really a problem with PD dialysis, and honestly hemo overall went pretty good for my first several weeks. I would often feel tired after treatments, but better the next day and in general my energy levels have been worlds different, which has been a great improvement!
My last two sessions, on the other hand, were a bit challenging because each one saw my blood pressure dropping dangerously low – the first time, I felt dizzy and saw rings in my vision until we stopped and they gave me some oxygen; the second time, I felt even dizzier and apparently I blacked out for a minute, and as I was recovering, at one point I was slurring my words … which was incredibly weird because I knew it was happening but couldn’t do anything to stop it…
The clinic staff was really good and immediately jumped into action, between stopping the machine from pulling my fluid and even giving me some back, putting me on oxygen and encouraging me to drink water, and checking in with me every couple of minutes to verify whether I felt like my symptoms were getting better or worse. They wouldn’t let me leave until my blood pressure had normalized and my symptoms had subsided, and encouraged me to call my wife to talk to on the ride home because I’ve been driving myself recently.
Those two sessions were definitely a reminder of how serious this is, considering that the worst I ever felt with PD was a general degradation of my treatments not filtering out as much as they should.
I guess it makes sense because while the machine can be more effective, there’s also additional risk from the process, too. I can only hope that it won’t drag on too long, as I’m only one doctor’s appointment away from my next surgery now, and hopefully once I recover from that, it’ll be time for my kidney transplant.
If it doesn’t work out that way, we might switch to me doing hemo at home, which has a long learning curve but is supposed to be a little bit gentler than doing it at the clinic. So we’ll see.
In the meantime, I’m tolerating it the best that I can. I’m surrounded by people who are older and clearly suffering more than I am, so I’m grateful to still have my wits about me for the most part during my treatments. I’ve even been able to use the dedicated 12 hours a week to make some new creative progress, so that’s helped my mood a bit! Oddly enough, I’ve also felt my depression kicking up more around unrelated things that I don’t want to elaborate on here, so that’s a new challenge but I’m doing my best to push through it.
There’s a lot more to say, including the impact my dialysis has had on the kids which is eye-opening, but maybe I’ll get into that more at a later date.
For now, tomorrow’s session begins week #5 and we’re going to cut down the volume so as to hopefully not make me pass out! Every day is an adventure, but it certainly beats the alternative…
“Tech stuff, bragging rights – mostly the second one…”
That’s what I told the Frontier tech when he left earlier this afternoon after upgrading my 2 Gbps Internet service up to 5 Gbps – admittedly a completely unnecessary residential speed even with five people all streaming different things at the same time!
Still, it’s cool, and my ISP had a Black Friday promotion that made it cheaper than the price I’ve been paying for 2-Gig ($99/mo for a year), so I had to jump on that. All of the 10-gig Ubiquiti gear in my closet pretty much demanded it.
Speed Test from my laptop (MacBook Air – M3 chip / 10 Gbps via Thunderbolt dock)Speed Test from router (Unifi Dream Machine Pro / 10 Gbps uplink)
I do find it kind of amusing that I’ve officially hit the sweet spot where speed tests have a hard time maxing out the line speed, and even the same with hardware – I tried downloading a test file from Usenet to the cache SSDs in my NAS and it got up to 350 MBps (2.8 Gbps) before throttling down much lower, though that could’ve been an availability issue with the file I chose. Most movies and TV shows these days average around 190 MBps (1.5 Gbps) for me, so it’s not super likely that I’ll see vastly improved speeds in my day to day use…
…but that won’t stop me from making some tweaks to see how close we can get to that 625 MBps max anyways!
It might have to wait until I can build a new server with NVMe M.2 drives and whatnot, but in the meantime, my recently upgraded laptop that I haven’t written about yet can now support 5-gig (technically my last one could do 2.5 Gbps with an adapter), the servers are all wired for 10-gig, and an upgrade for our wifi is only a stone’s throw away, so we’re using it even if it’s wonderfully excessive here at the tail end of 2024.
Who knows what the future will hold?!
After living on gigabit for about two years and 2-gig for 2.5 years, it wouldn’t surprise me to see it creep up to 10-gig in the next 2 – 3 years. The official cap for Frontier right now is 7-gig (at almost 3x the cost, it’s just too expensive right now … but a few years ago they wanted the same for 300 Mbps, so…), and several other ISPs across the country are offering between 8 and 10-gig, with one (Ziply Fiber) offering an impressive 50-gig plan for only $900 a month!
I can’t imagine trying to justify that one to the wife, but in time those prices will come down, too.
The future is awesome like that – at least in terms of fiber Internet prices…
So not to be a downer, but the last few months of dialysis haven’t been going great.
We have a measure called Kt/V that is used to determine how effective my dialysis is going, and unfortunately the last few times I’ve failed mine. This has resulted in tweaking my prescription (e.g. the amount of dialysis that I do), however we’ve hit some roadblocks and I’m not able to make any more changes until after a surgery that I’m currently working on for January…
…so instead, Monday morning I get to do another surgery to install a separate catheter to enable me to switch to hemodialysis in the interim.
Which is something that I’ve honestly been fearing for quite a while because I hate needles and blood and the whole process of taking the blood out of my body, cleaning it, and putting it back just creeps me out something fierce!
Yet I’m trying to look at it as a means to an end because I’m going to have to temporarily do it for a month after my January surgery anyways while I heal, so really it’s only a couple of extra weeks and then after that, I should be able to go back to peritoneal dialysis unless I have a living donor and we can do my transplant. Which is a whole separate ball of anxiety with the concern about possibly removing my old and gigantic kidneys at the same time, even though that’s really the end goal of this all.
This week has felt like a lot with appointments just about every day – Thursday I had three in a row! – yet it could pale in comparison to next year if I end up with one surgery after another plus the months of follow-up that come with a full-blown kidney transplant. Still, it’ll be worth it in the end to have some semblance of a life back again – I’ve really missed things like swimming with the kids and being able to do things in general without them leaving me winded and exhausted entirely too early.
Seriously, I get winded just taking out the garbage right now because my lungs have limited room to work thanks to how big my kidneys have gotten, so something’s going to have to give if they expect to stuff another kidney inside of me!
Admittedly it’s been a rough couple of months, especially during Christmastime because I love this time of year and want to do as much holiday stuff as possible. Our decorations this year were pretty much limited to a wreath on the door and an inflatable in the front yard, and even that had me dizzy to the point of having to sit down while I was staking it down. I did take Christopher and David to look at lights in Lakeland the other day, which was a lot of walking but probably good exercise for me! Other things like baking cookies and visiting theme parks, I’ll have to forego this year because I simply don’t have the energy for them, so I’m trying to make my peace with that and tell myself that next year will be different…
To that effect, I’ve also started thinking about how I want my life to change after transplant – namely being more active and taking better care of myself through diet and exercise. It’s hard knowing that somebody is getting up at 4:30am to go to the gym to try and be an organ donor for me without saying that I need to do better myself to make all of that sacrifice worthwhile! And part of me misses it as a good stress reliever, too, so that would be a nice change. It’s not like I’ll be able to do much for a while anyways because especially if they do a full nephrectomy (remove both kidneys), that’s a BIG abdominal cut that’s going to take months to heal, but looking ahead to the future is a big part of it, too.
So that’s where I’m at as of now. I’ve done PD for nearly twelve months and at its best, I felt probably 90% and managed to get quite a bit done. Unfortunately, that was back around April – June and it’s been downhill since summertime, so I can’t say that it’s not time for a change. Which is scary, but dying of kidney failure is even scarier, so I’ll suck it up and push through the best I can.
Like I told the social worker with the transplant clinic the other day when she asked me during my interview why I wanted a kidney transplant, I still have a lot of life that I want to live, and I want to see my kids grow up and spend time traveling and exploring with my wife, because I’m nowhere near ready to die yet.
And missing out on all of that is way scarier than any needle or sign of blood with ever be.
Every so often I like to put together a list like this – my first one was back in 2001, then in 2015, and now here we are in 2024!
I’m 44 years old now. More than twice my age when I wrote that first list, and not so surprisingly in hindsight, a lot has changed over the years! I can’t say that I care about writing for The Simpsons or my own sitcom anymore, or even going on a Disney cruise as opposed to any of the other lines. And as much as part of boat life still intrigues me, I’ve seen enough YouTube videos of guys bumbling around engine rooms to think that maybe having a friend who has a boat might be a bit more relaxing than actually owning one myself…
I’d argue that some of the goals from nine years ago still apply, and I’ve even finished a handful of them since then – my Lego Minifig collection is kind of ridiculous these days, to the point where I don’t know where I’m going to display them if we ever move! My server rack has also grown as big as it probably will under this roof, which is good enough for now. A few years ago, we discovered the miracle of solar heating for our pool, which has truly been a game changer, and I’ve spent a surprising amount of time playing video games this year alongside my kids, which is super cool!
Nonetheless, I thought it would be fun to throw out another list here tonight and a decade or so from now, we can look back again and see how things played out…
Career
Be very, very close to early retirement!
Pay my mortgage exclusively with money earned from writing.
Travel
Explore some of the castles around Europe.
Introduce the kids to cruising, and assuming nobody falls overboard, take them frequently!
Be able to afford a lifestyle that gets our family out of the house on a regular basis.
Health
Get a new kidney and don’t squander it.
Incorporate regular exercise into my life.
…the same with meditation…
…and also eating healthier.
Go easier on myself when things don’t go as planned.
Parenting
Be a part of their homeschooling journey and teach them as more than just a passerby.
Help each of them to do something really hard.
Always be seeking out new opportunities for quality time to spend with each of them and with the entire family all together.
Other
Learn how to cook a really good steak.
Build our forever home.
Build an arcade with the kids in said home.
Do things that are unexpected and push my own boundaries – not for the sake of other people, but for myself.
Next stop – 2035! I’ll be in my fifties, Christopher will be done with school and the twins on the cusp of graduation, and with a little luck, maybe early retirement will actually be in reach!
…or maybe I’ll have already been retired for a decade – who knows?!
