Where’d I Leave Off???

I’ve been meaning to write this post for a while now, but life has been a little crazy as of late. Go figure!

So I’ve been doing dialysis for five months now.

It’s certainly not my favorite thing to do, but it’s keeping me alive and who can really put a price on that? Well, aside from my insurance company, anyways – ouch! Thankfully the costs are pretty much covered between my private insurance and Medicare, and we’ve gotten used to hitting our Out of Pocket Max each year from the therapies that the kids used to do at home, so financially it’s not that big of a deal…

It can definitely be overwhelming, though – the extra time that it takes out of my schedule for treatments and doctor’s appointments, the added fatigue, the added sensitivity to things like diet and exercise – it all adds up to the point where I’m having to force myself to re-evaluate my new normal, so to speak. Needless to say, I relate more to the spoons method than I ever have before!

Still, I don’t want to sound all woe is me because when I compare my experience to other people going through the same thing, I realize that it’s actually going pretty well for me right now. I understand the process, which is something that I hear older folks struggling with when I go into the clinic. For the most part, I don’t have much trouble sleeping while the session is taking place, which some say that it’s hell for them to get comfortable. And I think I’m the most sympathetic for the kids that I read about struggling with doing dialysis at their young age and just feeling hopeless that their lives will be anything more than living off of a stupid machine.

I mean, I can complain about not being able to travel much or swim right now, but at 43 years old I can certainly say that I’ve done a lot of the things that I want to do with my life. I couldn’t imagine going through all of this in my teenage years when all I wanted was the freedom to explore life, whether that meant skipping out of school to go see rock concerts or staying up half the night with my friends attempting to create our own! I’ve struggled with depression myself plenty, so I get how looking at the requirements just to stay alive would be pretty dismal at that age.

Motivation has been tough for me lately, even compared to how I felt six weeks ago, so it gets easily overwhelming to look at a list of ten things that I need to get done and have to accept that right now maybe just a couple of them is all that I can reasonably handle. Which is tough because the rest of those ten things still exist and need to get done, but at the end of the day you can only do as much as you can do – whether you’re sick or perfectly healthy.

On top of that, it’s frustrating because I have a couple of tasks that have literally been following me for several months now – a savings account that I’m trying to help my Mom with, an issue with my new Medicare policy, and a side effect that presented itself after I started dialysis that I need a special surgery to correct. Nothing too crazy, but when I’ve got such limited mental bandwidth, I’d love to get them wrapped up so that I can focus my energy on literally anything else!

Oh yeah, and I’m still working on getting on the transplant list, too, though thankfully I’ve only got a couple more tests on my checklist before my case can go to the review board. They say the wait for my blood type (Type O) can be up to five years, so I’ll still be hoping that a living donor will come forward between now and then, but we’ll see what happens.

In the meantime, I’d like to start blogging more again, which I know I’ve said a brazillion times, but creative output seems to help keep my mind in the positive so this summer we’re going to try a little more of that and a little less sweating to 95-degree days in Florida!

A Meal’s Worth of Calories on Dialysis

Something that is definitely going to take some getting used to is “losing” some calories out of my diet due to the sugar in the dialysis fluid that I use.

It’s estimated at around 500 calories a day, which is basically like drinking half a pitcher of Kool-Aid without the pleasure of actually drinking any Kool-Aid!

For example, yesterday looked like this…

  • Met-Rx Apple Pie Meal Replacement Bar – 380 cal
  • Banana (half) – 45 cal
  • Dialysis Fluid – 500 cal
  • Onnit Cookies & Cream Protein Bite – 140 cal
  • Almonds – 200 cal
  • Krab Wrap w/lettuce, cheese, mustard on Carb Counter Tortilla – 350 cal
  • Strawberries – 25 cal
  • McDonald’s Fries – 100 cal
  • TOTAL – 1740 cal

Now my calorie budget, not accounting for exercise, is around 2,500 on a daily basis, so even with a calorie deficit of 500 I probably should’ve eaten a little more yesterday. The dialysis fluid is basically a meal by itself, but because I’m doing it during the day right now it’s making me not as hungry in the afternoon, whereas when I’m doing it at home it will be overnight while I’m sleeping.

I will say that all of this – so far, anyways – is making me take my health a little more seriously, which admittedly is something I should’ve done years ago but that’s neither here nor there. I’m a little more confident about being able to lose some weight, though I did lose like 30 pounds last year, so hopefully I can make the best of a bad situation and make some changes that will help carry me through the years to come.

So How’s Dialysis Going So Far?

In a word – …ok…

I’m writing to you live from my fifth day of training, so I’ve only got a couple more to go and then I’ll be ready to take this show on the road, or back to my house, anyways. I had a little hiccup last week that hasn’t been entirely resolved yet, but hopefully it doesn’t interrupt the process anymore so that I can try to get on with this “new normal” in my life!

I really have learned a lot this week, from simply how to connect myself to the PD dialysis machine and make the whole thing work to nutrition, biology, human hygiene … at times it’s been a little overwhelming, but thankfully I’ve had pretty great teachers and their documentation seems to be on the ball, so I’m not too concerned about missing something.

I think the most daunting part is how so many pieces work together to replace the functions of my dying kidneys, and how everything needs to be kept in balance so that fluid levels do what they’re supposed to do and not cause more harm than good, and how pretty much everything bad can eventually lead to peritonitiswhich is basically an infection in the area where PD dialysis works and the most dangerous thing to a patient like me!

It’s manageable, yet definitely a big change that is going to require a lot of coordination and time, but it’s better than hemodialysis (which uses needles) and much better than a way too early grave. Fighting it will get me nowhere fast, so I figure the best I can do is come into it with the best frame of mind possible and use it as a daily motivator to live better so that one day when I do get the option for a kidney transplant, I’m in the best shape to receive and make the best of it as the second chance that I really need.

I’m not crazy about making statements like that in my early 40s, but here we are!

Walking to Mordor, Revisited

Over a decade ago, I had stumbled across a fun, little video series about a group of guys who traveled to New Zealand to see the locations from the Lord of the Rings movies, including walking the some 140 miles between them.

This year I’m doing the same walking myself, virtually at least!

Apparently since the pandemic virtual marathons have become a thing where you do the running or walking on your own and then they just send you a medal when you’re done. Sure, I guess you could lie and claim that you finished when you really didn’t if you just wanted to pay $50 for the medal, but that’s neither here nor there because I need the exercise and I thought this might be a fun way to motivate myself!

Plus, the Lord of the Rings aspect just sounded cool and the medals they created are pretty awesome…

So for starters, just as our fearless hobbits did, I’m setting out from Hobbiton on my way to Bree (where they first met Aragorn, or Strider at that point). In total, it’s estimated at around 145 miles, for which I gave myself a goal of 90 days, thinking that if I average about a mile a day with a few longer walks along the way, I should be ok.

I didn’t take into account the daily walking around that my Fitbit tracks, so plus actual exercise might trim my time back a bit more.

It’s kind of neat how it’s linked to my Fitbit account, so I don’t have to log anything – it’ll just carry over my daily steps each day and add them to the total when it’s over!

Today was nicer than it has been outside, so Christopher and I got in our first walk of the year and what ended up being our longest walk ever at around 3.5 miles!!!

It’s a route that I used to walk Cleo on all of the time, but I haven’t done it in a while and my legs were hurting by the end of it!

Of course, the nine year-old was still filled with energy and managed to run a bunch of the way home!

Anywho, I’ll write in another post how great it’s been walking together and having a coach to keep me motivated! 😉

For now we’re just trotting along, a couple of hobbits out exploring the big world with some hand-me-down jewelry to dispose of. Eventually we want to start taking the dog with us, who should be useful for fending off Nazgûl and whatnot, given how protective he gets of our own little hobbit hole!

Looks like 2023 was busier than I thought!

  • Learned how to pan fry fish and shrimp
  • Took two vacations to our new favorite getaway, Vero Beach
  • Loved every minute of The Super Mario Bros Movie at the theater
  • Visited Kennedy Space Center and saw a rocket launch
  • Flew in a private jet with my Dad and sister to bring him home for hospice
  • Fully committed to homeschooling our kids
  • Took the kids on their first airplane flights, watched them drive a boat, and kiss the moose
  • Memorialized my Dad at the camp we used to visit
  • Played in multiple ball pits
  • Learned a lot about kidney transplants
  • Went on some great field trips with our homeschooling group
  • Built a home gym in my garage
  • Swam with a manatee in the wild with my family
  • Spent some much needed time listening to the ocean
  • Had two surgeries in preparation for my failing kidneys
  • Walked 25 miles with Coach Christopher
  • Celebrated Christmas with both sides of the family

So here’s to a 2024 filled with good health and more great memories! 🥳

Traveling Used to Be So Much Easier…

I guess I must be getting older because these days when I look at the idea of a road trip, I audibly groan instead of getting excited for a brand new adventure!

20 years ago I traveled 1,438 miles across the country to start the next chapter of my life in Florida and I did the entire thing in two days. Last year I repeated the journey after spending a month in Michigan to help care for my ailing father, and I was just about comatose by the time I finally made it back home again … and that was a solo trip without kids!

More recently, this week our family traveled up to North Carolina for the funeral of my wife’s aunt, and it was a mere 600 miles, so we figured we could just do the drive in a single day. Being from New York, apparently this was her halfway point when driving down to Florida (mine was Chattanooga, TN), so how bad could it be???

Leaving home around 10am, we arrived around 9pm, making the whole trip about 11 hours, which we thought was pretty good assuming a couple of hours for breaks, food, and gas throughout the day.

Coming back home, we left closer to 11am, but didn’t arrive until 1:30am, clocking in at 14.5 hours because traffic on I-95 through the Carolinas was stop and go for almost the entirety thanks to holiday traffic and those states’ failure to buy enough road for their stretch of the drive!

Ironically, the kids did awesome at the middle part of our trip, which was appreciated because that was the funeral and meeting family and whatnot, but where they could’ve done better was the drive there and back, and if I’m being honest, one of them did excellent, one of them did pretty good, and unfortunately the third one was an absolute fucking nightmare for all three of them.

It sucks how one person’s unreasonably salty mood while trapped in a moving vehicle with hundreds of miles left to go can make everybody’s blood boil, and there’s nothing you can really do about it. I mean, you can try to reason with them, which works about as well as reasoning with a tantrumming child usually does. Or you can try to ignore them, which works until an outside force – be it another driver doing something stupid or another child complaining about you not dealing with their brother – piles onto the mess and breaks your fortitude.

On the way up, I was lucky to intermittently sleep for most of the ride because my wife picked up more than her share of the driving, however I ended up doing like six hours in a row coming back simply because she was otherwise occupied holding said child’s hand while he refused to go to sleep for five of those six hours.

That said, today in the car while we were going to pickup the dog, he wouldn’t stop yelling at me about the sun being in his eyes, so maybe there’s something else going on there anyways!

As if needing to stretch for far longer than we ever did 20 years ago after such a ride wasn’t enough, it’s the whining and the more frequent pee breaks and the $40 snack stops that make road tripping with the family much more of an ordeal than they were in our youth.

A wise man once said, “The journey sucks – that’s what makes you appreciate the destination!” (Chevy Chase, Vacation)

For what it’s worth, the destination was pretty nice, albeit cold this time of year. My wife got a chance to see her family and mourn her aunt, which she really needed, and later that night we all blew off some steam running around Dave & Buster’s.

26 hours of driving for roughly 12 hours of quality time, but sometimes that’s the schedule that life gives you.

Kidneys & Me

I felt like writing because I haven’t done much in a while, and while admittedly I haven’t written much about this topic in particular because it’s very personal and very scary, let’s talk about the elephant in the room…

My kidneys are failing, and they’re not being slow about it anymore.

I learned that I have Chronic Kidney Disease about six years ago, though with my battles with high blood pressure dating back much farther, I’m sure it was slowly working its magic for a long time. Mine presents itself as something called Polycystic Kidney Disease, which is a genetic disorder that has both of my kidneys being overgrown with cysts. These in turn force them to work harder and grow, so for a truly frightening visual, your average kidney is about the size of a fist, whereas my kidneys have grown to roughly the size of footballs.

Big, disgusting footballs that have done less and less of their job as they endured, until now when they’re finally on the brink of failure. If you really want to be grossed out, here are some pictures … not of mine, but enough to turn your stomach either way!

So where do we go from here???

I’m young-ish … this summer I turned 43, and goddamn it, I still have an awful lot of life that I want to live. My kids are only elementary age, so they’ve still got a decade or more of school left. My wife and I have been married for 16 years, but we’ve been focused on the kids for so long that our own dreams and ambitions have taken a backseat. I still have books that I want to write and memories that I want to make with all of them, and the last thing I want to think about is whether or not kidney failure is going to tear all of that away from me sometime in the next decade.

The first step at this point is starting dialysis. I should be doing that in about a week’s time, as I’m nearing the end of healing from two surgeries that I had this fall to prepare for it – first to repair an umbilical hernia that I’ve had for a long time, and then to install a peritoneal catheter that I’ll use to go through dialysis treatments at home while I sleep at night. The last couple of months have been a long road, particularly when the first surgery failed and kept me in the hospital for a week, but now that those are both behind me, I’m ready to find my new normal and adjust to being a kidney patient on dialysis.

It’s weird because I’m not really scared of the dialysis itself – not yet, anyways. I know about the risks for infections and I know of people who have died on dialysis (not this kind), or from a refusal to do it. At the same time, I see it as a bridge to keep moving forward because right now with my diminishing kidney function, I get more and more fatigued and sleep longer simply because my kidneys aren’t doing everything that they’re supposed to be doing. Truth be told, we probably stretched out starting dialysis a little longer than we should’ve to accommodate the surgeries because it would’ve meant doing hemodialysis instead of peritoneal and I’m really trying to avoid going down that road.

So I’m hopeful that this time a month from now, I’ll find myself with a little more energy and maybe a little more time in my days as I accept letting this machine pickup where my body is failing me. 😉

Beyond that … is the option for a transplant.

That’s admittedly more scary because it’s so uncertain. I know that I’m starting dialysis, but there’s no guarantee to somebody else’s organ. I’m in the process of getting on the waiting list for donations, which could take a couple of years. I’ve also posted on social media about looking for a living donor, but that comes with its own set of mental obstacles because it’s a lot easier for people to say, “I’m praying for you…” than it is to take on the risk of offering up a working kidney of their own.

And just to be clear, I can’t fault anyone for not wanting to donate an organ. The risk isn’t zero, and you have to travel and miss some time from work which many people simply can’t do. In a way, I kind of liken it to when we were going through IVF trying to start our family – it’s just one of those things that is so big that it’s hard for someone on the outside to really understand what you’re going through on a day to day basis. Some may try, and others may trip over their own feet trying, but most people will go back about their day after they post those words of encouragement.

That’s ok, and the kind thoughts are appreciated. It’s hard to say what will be the determining factor for that one person out there to decide, “Yes – I think I want to do this.”

Until then, it’s quite honestly a roller coaster of emotions and right now I’m just trying to focus on enjoying Christmastime with my family and getting ready for this next phase of my life.

I’ve been learning more about diet and nutrition, and trying to get that under control … although holiday snacking definitely makes it more difficult. I’ve been really yearning to exercise, probably mostly because I’m not allowed to do much of it right now. Since November, I’ve taken to walking regularly with Christopher, which has been awesome, except that the weather has really been sucking lately so it’s hit or miss when we actually get to go. The alternative is us using the elliptical and bike in our gym out in the garage, though right now it’s piled with boxes from Christmas decorations, so I probably need to get on that this week…

What comes next is to be foreseen, and I know that tomorrow isn’t promised to any of us, so I’m really working on things I can to do live life more in the moment and maybe not defer so much stuff to maybe eventually someday as we often tend to do.

I definitely would like to start blogging more again. I know that I’ve said this so many times before, but maybe this time it will stick. Who knows?! There are things I’ve decided I want to write less about as I get older – namely things like rants and reviews and even opinions, because let’s be honest, there are a billion different opinions online these days and most of them are pretty terrible!

If I can tell some fun stories, though, and share about the things that I’m still passionate about, those topics we can always use more of, so I’ll see what I can do on that front.

Happy Holidays, from my failing kidneys to yours that hopefully are not! 😀

Dream Journal : Why Is Donald Trump Here???

I was just lounging in a hotel room, watching TV when suddenly Donald Trump appeared in front of me!

He was wearing a suit like usual, but was completely alone, and he just started chatting normally – not all shouty and crazy like usual – and then sprawled out across the bed next to me as if we were two teenage girls talking about boys we’d seen down in the food court or something!

He had with him a poster board covered with a bunch of squares of paper, focusing on a pink one that he compared to a stack of paper on the nightstand beside me as he defended that the color he had was a lot more pink on TV than it looked there in the room.

I agreed and laughed, telling him that apparently there was something he could say that I didn’t immediately disagree about, and he thought that was funny.

Then he got up and left the room, and I immediately went around checking all of the doors to make sure the deadbolts were in place.

The next day I was driving a golf cart around the resort where we were staying and we saw Trump off in the distance, just wandering around talking to people, and we both remarked that it seemed odd for the Secret Service to let him do that.

Hospital Fun, 201

It was five years ago that I first spent the night in a hospital thanks to an unexpected bout of cellulitis that I hadn’t even known was a thing until it crippled my left shin for a good couple of weeks.

Last week I had a new first with my first surgery, subsequently followed by a much longer admission after said surgery unfortunately didn’t go according to plan. Today is Monday, and I’ve been here since last Thursday, hoping to get to go home tomorrow. The surgery itself is to repair an umbilical hernia that I’ve probably had for the better part of a decade now. I tried to get it fixed years ago, but I was too fat at the time and now it has me between a rock and a hard place as it’s preventing something bigger that I don’t really want to write about right now…

Admittedly it doesn’t really hurt at all. As far as hernias go, the doctor says that it’s pretty much all fatty tissue and not bowel stuck through the hole, which is apparently a very good thing.

The long and the short of it is that we got about 20 min into the procedure Thursday morning – I was under anesthesia with a breathing tube down my throat, the surgeon had poked a few holes in my belly and was ready to go inside with the robot arms or whatever, and then suddenly my oxygen saturation dropped to 80%, which is bad. They paused and tried to adjust some things to get it to recover, but eventually decided to abort the procedure and I woke up sore and groggy, with several holes that had been patched, and still one hernia.

That said, I was still alive, so I think they made the right choice!

Since then I’ve spent the last four days taking tests and antibiotics to try to clear the little bit of gunk they found in my lungs, and trying to convince myself that things will be different this time. I’ve seen so many doctors and they all think that we should be in a better place this time around between the treatments themselves that I’ve been doing and also now just knowing that it was an issue last time so that they’re all more aware.

It’s still really scary, though. I think the anesthesia freaks me out the most because it’s like turning the lights out without knowing for sure if they’re going to come back on or not. It’s scary to be that unaware – for Thursday’s procedure, the last thing I remember was staring up at these huge lights in the operating room while they were getting ready, and then the next thing I knew I was in a hospital room.

I’m not even sure how long I was under, but during that time they dealt with the breathing tube, poked holes, filled my belly full of air to prepare for the surgery, noticed the oxygen problem, reversed everything, and then took me back to the PACU where they did an x-ray that I had absolutely no idea about until I read about it in my chart later!

I don’t know how close to death I was and I probably don’t want to know, although more than once doctors have reminded me that any surgery comes with a certain amount of risk … it’s just scary that I’m at the point in my life where life itself is on the line.

So I’m sitting here in my hospital room, waiting for the clock to tell me it’s time for my appointment to try again. I can’t really be late because they literally send a wheelchair for me, but I’m both bored and anxious at the same time. Until this hospital stay, I couldn’t even tell you the last time that I was bored … I spent hours just watching TV and playing solitaire on the iPad they gave me last night to try and pass the time!

I learned that you can work backwards in solitaire by moving cards back from the aces to the main board if needed, so that was kind of interesting.

I’m trying not to get myself all worked up because I already did that last week. I have to put my faith in all of these really smart people who’ve been taking care of me for the last week and believe that everything’s going to turn out fine this time.

Here’s to a productive “nap” … hope my body behaves and I’ve got lots of positive stuff to share later today…

Balancing Fun and Frustration in Parenting…

While we were up in Michigan a few weeks ago, we spent an evening with my Aunt and Uncle who I hadn’t seen in a long time. They have a huge yard and the kids were having fun running around, to the point where they got a little wild at the end and weren’t listening when we said it was time to stop playing in the lake and come inside.

Sensing our frustration, my wise-cracking uncle commented, “And just think – these are the fun years!” before leaving us to wrangle our kids out of the water.

I’ve done a lot of reflecting in the last month since my Dad passed away, and I keep coming back to that line over and over again because deep down I know that as much as the boys might drive us crazy, it’s not going to be like this forever … and not necessarily in a great way.

Kids eventually grow up, and hopefully ours will be the kind who still want to spend time around their parents when they become teenagers, but you never know. Then adulthood comes and you have to step back even more and see what they become as you also try to live out the golden years of your own life yourself.

And it kind of changes the perspective when you’ve been hearing, “Dad! Dad! Dad!” the entire car ride and just want some peace and quiet if you take a different approach and remember that you might one day reach a point where you’d love to hear it, if not for a million other priorities that will take over their own lives as they grow into the full-sized people that they’re destined to become.

It’s not easy – because kids seem particularly well suited for stripping you of your sanity at the most vulnerable of times. But I’m trying to show a little more restraint, and a little more patience when I’m plagued with 20 questions on a simple trip to the grocery store or one of them just wants to come in and hang out on the floor in my office while I’m working.

The other day I was actually talking to Christopher about if he decided to have kids of his own one day, and I told him as honestly as I could, “Sometimes it can be really challenging, and other times it’s absolutely awesome.”

I think the trick is to not let yourself dwell in the extremes and just live every day that you get for what it is.