The Adventures of Kidney Boy
Monday, May 1, 2023
Just more absolutely bad news.
Monday, April 17, 2023
Back on the Chain Gang
So, while my kidney function dwindles down to a trickle and I find myself closer and closer to dialysis again, I visited the transplant clinic at Upstate Hospital in Syracuse, again, for a "new patient" intake into the transplant program... which I'm already on for my last transplant. Yeah. It's a weird situation, but to be considered for another transplant and get back on "the list" I have to start again from ground zero.
I sat in this same department, 20 years ago exactly, and did this process for the first time. My father was with me then - and now that I'm no longer married, he joined me again. It was bittersweet - only two people on staff were there when I started two decades ago - but now, they greet me as an old friend. Which has its comforts. I've had a lot of people in my corner in this center - I mean, these people have worked a whole career there, knowing me the entire time. It's a weird slice of life - going through all the paperwork again, all the "training videos", all the workup. I have to get several more tests, including a CT scan... they have to figure out where they're going to put another transplant in me, and if they have to take out any of the old ones.
If you don't know, they don't "replace" your kidneys in the same location as your native kidneys, and unless the dead organs are causing problems (ala Polycystic Kidney Disease or Kidney Cancer) they leave the native organs in, and implant new ones in your abdomen, usually just behind your hip. Since I have already had THREE transplants... there's not a lot of room in there.
Can I just take a sidebar to lament the fact that I've had three transplants... one of which worked pretty well for over 7 years, and two that didn't. The first transplant being damaged in a follow-up surgery, to this last one - which never really worked right (I never had a creatinine below 2.0 with it) and turns out had some unseen damage from the donor. It's a lot - that I've had to endure this three time, with two really big disppointments. It's crushing. I had my last transplant during the height of covid, too, and was recently seperated... I have been through a lot, but I've also DONE a lot with these opportunities. But... I've got two little kids now that mean more to me than anything in this world, and I just want to be here for them, and continue to be their Dad. Being their Dad has been my favorite thing I've done in my lifetime... and I need them, and they need me.
So, I'm preparing again.... hopefully I can get another transplant, and have success with this one. Maybe for a long time. I'd like to be there for their milestones. You begin to think of these things - things you might miss. This is my hand, and I'm going to play it.
Life is going to be, frankly, pretty awful for me for a while. Dialysis will be hard. Finances will be hard. Trying to be a present and good Dad while dealing with this will be hard. But this will pass - I'm in a hard time, but if I have learned anything in my 20 years of dealing with ESRD, it is that I can endure and even flourish given the right circumstances. So, here's to the next part of my life - as difficult as it may be, I'm ready for it. I'm fighting. I'm going to come back someday, strong as ever, and be the best version of myself that I can be.
Again, a thank you to all who read this, and all who reach out to encourage me, help me or support me. All I ever seem to have is words, a whole bunch of them, but I mean it more than anything else when I offer my thanks and my grace.
Thursday, November 17, 2022
Running Out of Time
I am reaching the end of my time.
I feel it in me - and my lab work shows the same. This last transplant is giving out - it has been since it was implanted. Sometimes transplants work out great, and other times - through no fault of the donor or recipient, it does not work out as you hope. The kidney had issues shortly after I got it, and after several biopsies, they couldn't determine quite why, other than it seems the kidney had damage from the donor they did not detect. But my time with this graft is nearing an end. It's my third kidney transplant in 20 years - some people never get one, let alone me who was amazingly lucky enough to get three. I might get relisted for another one, but I might not. That's uncertain now; I need to be re-evaluated, and go through the whole process... again. There's only so much a person can take - the thought of having to do it all again, all the tests, the waiting, the judgement... and then maybe waiting on a list, having to do dialysis again? And the rainbow at the end of that possible tunnel is ANOTHER major surgery on my abdomen - to be cut open again, have another organ implanted in me again, and hope that THIS ONE works for many years?
I don't know if I can do it. I just do not know.
I want to. I'm not ready to be done - I'm not ready to leave my kids, my family, my friends. I've dealt with a lot of sadness, disappointment, pain, anguish, sorry and depression over the last few years, but - goddamit - I still want to be in this game. Aside from my poor health, I feel like I have a lot more in me to offer this world, to the people in my life who rely on me. I'm definitely beat down by all of this, and there are times when I want to scream. I spend a lot of time alone when my children aren't here, and a lot of it, I sit in silent contemplation... trying to plan what moves I can make, what moves I want to make, and what moves I definitely cannot make. I'm sad, I'm cold, I'm lonely, I'm not in good health and I'm just not well, in general. And I don't like to say that out loud or admit it - but I'm broken as hell right now, and nothing can really fix that. There's nothing - there's no miracle big enough to occur to change or fix any of it. People often have big dreams, dreams where everything is fixed... but, I don't dream that anymore. At this point, I'd just like to survive and survive without being in a massive amount of pain. Emotional and physical pain wrack me every day, and every day is a struggle just to make it from awakening to falling asleep.
I'm going back on dialysis. I don't know when. But it's sooner than I like. And I will most likely die on that machine this time. So I'm just trying to think about how I want to spend my final time here - and I'm going to try and spend it positively. To engage in things I love and enjoy, and do the best I can, when I can. Days where I feel well enough to do so are few and far between, but I need to spend those days engaging in the things I enjoy the most about being alive. In spite of all the muck I wade in, I enjoy some things still very much.
But, like so many suffering from chronic and fatal illnesses before me, I'm going to cry about for a moment about how unfair it is. For a moment. I need to acknowledge that. It's unfair. It sucks. It sucks for me, it's sucked for millions of others, but dammit, it sucks. But I can't wallow in that - it's not a good way to spend time. If you still read this blog - thank you. Getting these thoughts out over the years has been special to me. I've always enjoyed putting my thoughts to words - and in writing, giving them a physical form and shape. Sharing my experience and having people who care about it has helped me immensely in the darker times, and right now is definitely one of those times. At this point, I'm not looking for some light to save me. I'm just looking to enjoy the spots of life on my trip down to the never-ending darkness, the trip we all take - but mine is coming sooner than I'd like. But I have survived longer than I thought I might.
Wednesday, October 19, 2022
All This Time
I wrote a song once, when I was about 17 or 18. Pretty sure it was just before my 18th birthday - I know I was a senior in high school, barrelling towards graduation, which seemed so daunting at the time. In your youth, you're kind of hurtled towards this goal - the end of high school, in which your adult life is supposed to start after. When you get older, you realize it's just one step into a great big world that you never really ever complete growing in... but I was feeling the arrow of time at that tender young age, and feeling much older than I actually was. The song was contemplative - written as someone looking back on their life, and things they hadn't done. Thinking about how I was musing on that at 17/18 is amusing now, but the song had a lot of yearning in it. I think once I started hurtling towards adulthood, I became obsessed with it. Now, people might call it "FOMO"... fear of missing out. I just wanted to live a life of quality.
So, I wrote this song 26 years ago, as a kid, and I found myself playing it again. It is quite weird to be a person who has written things like songs, and had many decades pass since I did so. But my fingers found the frets, and I found the words of a 17 year old boy who wanted more from life... I was a kid, writing as a sad old man, and it's so funny how now here I am, a sad old man, and it's like I wrote this song for the future me who needed the reminder that you can look back, yearn for more, but still miss things along the way. I may have been a really stupid kid at times, but I think there was always a bit of wisdom lurking inside of me, and I've been fortunate enough to meet so many amazing people who added to my collective knowledge over the years. Life has given me many great teachers, and put great people in my path who have really given my life the gravitas and meaning I have always longed for. I am forever grateful to those who have shared their time with me, and imparted their lessons, wisdom, wit and love. I hope I've managed to do that for some people along my way, too, because life is all about what you share with others you meet.
I think I'm going to record a version of this song again soon here - it's a time in my life where it probably fits me better. But I'm lucky to have left gems like this in my past, I suppose. Reminds me that I have lived a life less ordinary, and I am glad for it.
Thursday, September 22, 2022
The Lord of the Rings
I was feeling kind of down in the dumps the other night; kids were at their Moms, and I was home alone in my empty house. It happens - often when I'm feeling the sads, I'll turn to some of my favorite things to try and lift my spirits. This seems harder to do as I get older, I don't know. Maybe I'm growing more curmudgeonly, or maybe my depression has a better hold, but often things I used to enjoy and love don't hold that same spark. But the other night, I put on Lord of the Rings: Return of the King, and sat down to watch four hours of film by myself.
I'll have to go back to my childhood here, and talk about how I loved reading as a kid - I learned to read at an early age, and ever since then, stories have enthralled me and taken me to places I never thought I could go. I especially loved fantasy and sci-fi books; they always had a certain magic and phantasmic quality that spoke to me. So early on, I developed a love for A Wrinkle in Time by Madeline L'Engle, The Chronicles of Prydain by Lloyd Alexander, The Chronicles of Narnia by CS Lewis and of course, The Hobbit by JRR Tolkien. I knew that there were stories after the Hobbit... the mythical Lord of the Rings. Lord of the Rings had a real cult status when I was a kid in the 80s - at music stores, there were always these fantastical LOTR posters (always near Led Zeppelin records, weird huh?) that depicted the imposing Gray Wizard Gandalf... with sword and sorcery movies being prominent in the early 80s, and Dungeons & Dragons becoming popular, fantasy imagery was just everywhere, and I was sucked in. But LOTR eluded me... the sheer size of it was daunting, and the language was dense and deep to a kid... I didn't read it til I was in my teens, but the love of all things it encompassed was impressed upon my soul at a very early age. So, it became a treasured part of the story library I kept in my head and heart. When Peter Jackson announced he was making three films in 1999... I was so excited. I remember watching countdowns on the official website, back when the internet was still nascent! I saw The Fellowship of the Ring in theaters, and I remember from the opening scene showing the battle against Sauron and the cutting of the ring by Isildur... I was hooked. But in 2002, I was battling kidney failure and didn't even know it. When The Two Towers came out in late 2002, I was nearing the end... when I saw the film, I felt sick, terrible, and my vision was blurry from my illness. I enjoyed it, but I had this weird sense of dread that I might not live to see Return of the King the next year. In the time between the films, I was diagnosed with ESRD, put on dialysis, and I had my first transplant just a few weeks before Return of the King came out. I was alive, feeling better than I had in years... and my first outing after surgery was with my brother to see Return of the King. I lived, I survived, and I saw the completion of the films. I loved it - the film was epic, amazing, uplifting, and an ode to friendship, and the strength of love, courage, family & friends. The same things that had helped me survive my own journey into Mordor, as it was.
So the film holds a special place in my heart - it's a reminder of that time, what I endured, and what I was able to face and overcome. So watching it every time since has been a somewhat emotional experience for me, personally - not to mention the content of the film. At the end, when Frodo Baggins has become so weak from the nefarious power of the ring and he cannot continue to climb Mount Doom, his best friend, Samwise Gamgee, says to him "I can't carry it... but I can carry you!" and throws Frodo over his shoulders and climbs up towards the top of Mount Doom, to where the ring can be thrown in its caldera and destroyed. It's a powerful moment in storytelling and film, and definitely hits me hard. I've had a lot of people carry me up that hill when I could not go further. In the end, the ring is destroyed, and Frodo and Sam, two small, seemingly insignificant beings, have saved the entire world, with the help and support of their friends.
I sat through the movie, alone, with my dog - watching the story unfold, but thinking of my own the whole time too. There's been adventure, there's been love, there's been pain, there's been sadness but I've lived through it all. Sometimes it's overwhelming, and not every day is perfect here and now, but I'm glad I have something like a silly film to not only entertain me and lift my spirits, but to remind me of everything I've managed to accomplish in spite of great odds, and the amazing people that have given so much to get me here.
Thursday, September 15, 2022
Back to School
My kids have been back to school for over a week now; every morning, I get up and I pack their lunches. Some days they've stayed here, other days their mom brings them over to my house before she goes to work, so they can catch the bus here. But every day, I get the privilege of seeing them off on the bus. It can be a rush in the mornings - especially when I'm getting them dressed, making breakfast, putting together their lunch boxes, making sure their backpacks are set, and getting them out the door and on the bus - but to me, these mundane chores are magic. I marvel at the fact that I have little people of my own that get on that bus - and later in the day, they get off it, run up to me and just start babbling to me about their day or whatever else is on their mind. We're pretty close now, my children and I. I know it won't always be like this as they age, but right now... it's a magic moment in time, and yet again, I'm thankful that I'm even alive to experience it.
This circle of life thing is a wild carousel; it feels like just a short time ago, I was changing their diapers, rocking them to sleep - swaddling them snugly so they could sleep! And then I think of myself, and I feel the ocean of time wash over me and I remember riding the bus to the very same school they're attending now - only for me, it was 37 years ago. Prior to my kids orientation, I hadn't set foot in that school in 32 years. It was recently renovated over the summer - and many features changed. I noted a new entrance way, and it's safety features... very different from the wide open main entrance of my youth, with a giant, open atrium. I noted in my mind, sadly, why the changes. The heavy, lockable doors that separated things were a terrible reminder of the world we live in now. This will just be normal to my children, going forward - a sad thought to me. We always wanted a better future for ourselves and our potential children when we were younger, and while we have many new miracles of technology, I do wonder if my kids have a better world than I did at their age. They're certainly happy, and I'm thankful for that. But on some level, I do feel society has failed them. Education isn't just about learning facts; it's about gaining insight, and wisdom. It just feels like there's less and less room for the wisdom of whimsy as a child, these days. I don't have any answers yet, and neither does society at large. Right now, I am glad that their safety is a priority, at least at that level. But it goes beyond just keeping a secure campus - our society is less secure. Angry. Polarized, energized, desensitized and with out good guiding principles in many ways. So I do hope in my kids lifetime, things improve.
Right now, as I write this, I'm waiting for them to come home, and tell me what they did today. We'll do this all again tomorrow, and I am happy, lucky and fortunate to be here, to be their father and to be given the opportunity to love and guide them. Cliches are cliches for a reason - so enjoy all the mundane, stupid stuff. It's what matters.
Sunday, August 21, 2022
The Importance of Being Earnest about Sweets
I'll never forget my first can of Dr Pepper.
We were visiting my Dad's oldest sister - a place I always remember as a very musical house. She had three kids, my cousins, who were all a fair bit older than me. They were all so musical, along with my Aunt. She had the most beautiful voice- I cannot recall all the details of that day, as now I'm of the age where trying to remember childhood memories are encased in a fog as my brain slowly degrades. Lovely, I know... I digress. But I remember seeing a case of Dr Pepper in her kitchen - a new soda? One I hadn't tried? I loved soda as a kid; it was a real treat. We didn't have it often, so I was intrigued by the maroon color and the amazing typeface of the logo. My obsession with typeface and fonts may have its origins in that old Dr Pepper logo... but I asked her about it.
"What is that?" I asked, pointing at the case of soda.
"Oh... that's Dr Pepper! You might not like it," she said with a grin, "It's kind of... spicy!"
"That's why they call it Dr Pepper!"
"Oh yeah," she replied mischievously.
After some more cajoling, she finally gave me a cold can of it from her refrigerator, and popped the top on it. I took a sip... and while, to me, it did have kind of a kick, it was sweet... and different from anything I'd had before. I immediately smiled and said, "Whoa! I wanna drink this forever!" She laughed and said, "Yeah, it's pretty good...we like it! Now don't drink too much!"
This is just a tiny memory, based on getting an old sweet from my Aunt in the kitchen of her raised ranch home. Kind of a banal moment, really, yet it's burned into my brain. I guess sometimes these moments burrow into your mind, so much so that every time I see that classic Dr Pepper logo, in the big white font on that maroon background, I think of my Aunt. She passed when I was 16, only a few years older than I am now. I still miss her very much - I often think of what she might have thought of me as I grew, the things I did. Loving people who have passed from your life is one of the most difficult but amazing things we get in this human experience. She's been gone for almost 30 years, yet a piece of her lives very vividly inside me. She probably never thought about that Dr Pepper moment ever, yet it's something that endures. I try to remember this when I think the things I have done are insignificant. Someone, someday, is going to have that "Dr Pepper" moment with me, and in a way, it keeps me alive long past my traditional existence.
Monday, August 15, 2022
Lucky in Love
Yesterday, my parents came over to my house to help me remove and replace some old rugs in my house. My dog, getting up in her years and becoming more obstinate, has made a habit of peeing on rugs in my home and it's only gotten worse lately. I had to get rid of two rugs in my house; my folks came over, and hauled them up and out and helped me get ready to put new ones in. It's a lot of work; I'm trying my best, but between being a single Dad and my health steadily declining, a lot slips by me lately. They help me out a lot - and I cannot tell you how many times I sit alone in my house with my thoughts, and dwell on how thankful I am for my parents. Not everyone has the support system and family that I do, but my parents have really put themselves out to help me and my kids. It's hard on me, emotionally; I wish I was more self-sufficient and less of a burden on people. I want to be the one taking care of people, helping them out... and not taking up the time of people I love. People who are retired and off enjoying their life and time. But they give so freely of themselves, and with love... it fills my own heart when I see how they treat me, and inspires me to try and be the best father I can be to my children.
The joy with which they love their family just make my soul swell. They invited me out to dinner that evening; they were having dinner with my older brother, my sister-in-law and my niece before she left to go back to school for the fall semester. My niece is just a wonderful young lady now, and she's always been special to my heart - she was born just a few weeks before my first kidney transplant, and every time I see her, I am reminded that through the miracles of modern medical science and the love of my family, I have lived long enough with end stage renal disease to witness her birth, and her growing up to become a young woman. I often muse upon the fact that this young lady has never known a world in which I was not deathly ill... but watching her and her sister grow up has been truly one of the greatest gifts of my life. We all had dinner at a local pizzeria last night, many laughs were had and stories were traded. Pictures were shared on phones... it was just a really nice night. Just before we all parted, my mother reached into her purse and got an envelope with a card in it, and I watched her lovingly put it in my nieces hands. She smiled sweetly and said "Just a little something from us for going back to school..." and I was privately a witness to another act of my parents love and generosity for their grand-kids. I've watched them be this way with those girls for their whole lives, and now I watch them be this way with my children... on my drive home, I had tears in my eyes as I thought about how lucky I am, and how lucky my family is. I have wonderful parents who truly love giving to their family, giving of themselves, their time and their genuine affection. There's real love that flow through us all, and so many people do not have that.
I may be facing large odds and difficult situations in life, and I may stress out about being a burden in the lives of the people I love, but I am sure of one thing - I do not lack for love, and honestly, with that, I have been able to endure so many things that cause other people to cast in the towel early. I will continue to fight for a better life for myself, for my kids, for my family. Maybe my fortunes will change, and someday, I can take care of those others in my life who have given so much of themselves for me. For now, I'm going to be thankful that this is where I ended up in this world.
Monday, July 4, 2022
I drove by a section of the Old Erie Canal today - I was out for a drive by myself on this Fourth of July, and I took in the sights. But seeing that old Erie Canal Park reminded me of just how intrigued I was by it as a kid. We studied about it a lot in elementary school - growing up in Central New York in the 1980s, it was just part of our local history. They seemed to be doing a lot of work then at restoring sections of the old Canal and turning it into a park - one long park that ran for miles. (36 miles, I am told as I research - from Dewitt to Rome NY) I kind of took it for granted, but looking back I can see I was a child during the time when the most money and attention was being put into this - there were parks along the way with playgrounds, pavilions and picnic areas - and often little museums about canal history. We often took Field Trips to these places - and I was just fascinated that they dug a canal across the length of NY state to transport goods in the mid 1800s. Some things they opened in the 80s are gone, but some areas and parts have thrived - just seeing this one section remembered the thrill I had as a kid - going on a field trip to such a place, and learning about the history of it. That really thrilled me as a child - again, I wish I had that same kind of fervor and zest for life as I did when I was eight. You do lose that kind of excitement as you age and your perspective and world gets wider. But I enjoy remembering those times - and now, I enjoy seeing my son and my daughter get excited about such kinds of things. My son went on his first field trip to the zoo this year, and hearing him talk about it - well, I can say I lived vicariously through his excitement, his thirst for knowledge and his want for fun. Both he and my daughter are good reminders to me of what I love and value in life and that is treasuring experience. Treasuring learning; learning from a classroom is a necessary bore, but learning from experience is a pleasure that will continue to pay back as you age. Here I am, 35+ years later still treasuring all the experiences I had learning about the Erie Canal from on-site visits. You can learn much from textbooks and from a classroom, but you can learn even more just by experiencing life and being open to it. I have to remind myself of that, because I am more closed off now that I am older and curmudgeonly in my ways. But I still have much to learn, everyday, if I am willing to submit myself to the experiences that life may put in my way. I can still learn and still be excited by it. I can't wait to see what tomorrow brings me and my kids.
Monday, May 9, 2022
The Front Room
In the old farmhouse, there was a front room - had a big, round table made of orange formica. I spent a lot of time in that room growing up - there was a beat up old two seat couch in it, and I played a lot of guitar on that couch. Spent time learning chords there, all the way up til I could run up and down the fretboard in a decent approximation of a skilled guitarist. We all spent a lot of good nights in that room - the grownups played cards, the kids did too when the old folks weren't there. We listened to a lot of radio in there - that's all we had. Electricity was in short supply, but battery powered radios pumped in songs from radio stations all across the North Country and Canada. I played along to a lot of Neil Young. Sometimes, they'd play old "Firesign Theater" re-runs. I can't hear Firesign without thinking of that camp in the old farmhouse. I can't play my guitar without feeling that room, and remember the people who inhabited it. A lot have passed on now, but their memory lives inside me and sometimes inside my fingers as I play songs still. I'm getting older now, and it's funny to think I was ever a child inside there. I heard some Firesign Theater earlier today randomly, and I thought about that room. I cut my teeth on a lot of things I still find joy in, and now all I have are loved and precious memories of that room and the people I knew from it. Life is good, especially in the small moments. I try to remember times like this when it all seems so futile. Time seems to be bearing down on me - I get stuck in points where 5 minutes can seem to last forever and hours are not enough. I guess when I was young I figured I had all the time in the world - but now as I get older and my health grows dimmer and dimmer with each passing day... I really see how finite what I have is. It's sad in one way, but at least I can say I lived moments like this and they shaped me into a person I like and sometimes enjoy on occasion. Cliches are cliche for a reason, but Warren Zevon was right - enjoy every sandwich. Every one.