Hospitalized… yet again.

 Almost 4 weeks ago now on February 20 I took another ride to the hospital in an ambulance. This time it was because when I came home from Dialysis, I tried to get out of the car and walk to the front door of my home and enter, But even using my walker, I could not lift either of my feet to get in the front door. My left leg had become lame a few months before and now my right leg began to become lame. I knew something had to be done. So the kids went off to be with their mom, And I spent the weekend in the hospital. On Monday, their spinal surgeon determined that I Needed surgery On my thoracic spine - t10-13, That it had become too narrow and compressed the nerves, and that was contributing to my legs not working. I had to get a laminectomy and on Tuesday night I had the procedure. They told me it would take some time and rehab to see results. I transferred to a rehab facility in another hospital that way I could do rehab and dialysis at the same place. I’ve been doing occupational therapy and physical therapy for the last three weeks and sadly, I seem to have gained no ground. My left leg is unresponsive to my commands, and my right leg works from my knee below, but from my waist to my knee is weak and will not respond to my commands. It’s a dire Time in my life. Nothing seems to be working right. I can’t even come up with any kind of flowery language too describe my experiences, right now. I feel like this blog entry isn’t my normal kind of thing but right now I’m in so much pain and my legs don’t work, I’ve been away from home for a month, And I miss my kids dearly. My children are the one thing in this world that keep me going. And being away from them, rips my heart out. I’m losing all hope. I think this is the end for me. I will spend the rest of my days as a paraplegic on Dialysis. The life I once knew is gone. I’ve tried so hard for so many years. But every time there seems, I reach a decent place I get thrown down into the pit of hell once again. I don’t know if I will ever walk again. My chances of getting another kidney transplant Are slim. I fear I may have lost this fight. There’s only so much a man can go through and come back from. I fought a good fight and I fought hard. But the forces of this universe Me down and destroy destroyed are too powerful. I really wanna thank everyone. Who’s ever read this, And those who have followed me over the years. I don’t know what my future looks like, But it doesn’t look good. There’s too much to overcome. I wish all of you the best - And I wish you, happiness and health. I wish you long and peaceful lives. My time on this earth Has seen some really amazing highs and some really devastating lows. I’ve had almost 48 years on this planet and I have spent 23 Of those dealing with the consequences of end stage renal disease. It’s almost half my life. Thank you for taking this ride with me. This will probably be my last blog entry for a long time, If ever. I hope that some parts of it may have helped you, Some parts of it may have entertained you, And maybe you learned a couple Things along the way. I know I did. I’m going to continue my fight the best I can, but being honest it doesn’t look good from here. Thank you. Hail and farewell. 

~Steve

Once the kidneyboy - forever a KidneyDad 

MRI, spine and such

 I’ve got an MRI coming up on the 30th; I was supposed to have one on the 7th, but when I showed up at the center, it turns out that it was far too narrow for me… my shoulders were practically touching the sides of the bore, so they rescheduled me for a different location that has a larger bore and an open MRI… I have had them before in the past, and I dealt with the mild claustrophobia, but that one was too much. I hope this next one isn’t too bad. They need to take a look at my back and Spine and see how much my herniation’s at L4-L5-S1 have deteriorated. And maybe I can get some help & relief. My mobility is seriously affected now - I am having a lot of difficulty getting around and I’m in a lot of pain all the time. Trying to get these things taken care of is always such a runaround too, but hopefully in time it can be taken care of. This is one of those moments where I tell everyone to cherish their good health and mobility… when all of a sudden is gone and everything changes, it can be a real upheaval to your life. For me, you add that in with everything else that I have to deal with and… it definitely takes a toll on you. But baby steps for now and this MRI is definitely one of them. Keep your fingers crossed for me. 

Taking care of my back and getting back on the transplant lists are my goals for 2026. It’s frustrating that things take so much time but if I can improve my mobility and get another kidney transplant, I may yet catch my third wind in this life!!! Again I wanna thank everybody who follows me and helps out - there are so many people out there that do me favors, and have been generous and donating to things like my GoFundMe. It is really kept me going over the years and I am lucky that I have such amazing people in my circle of life.

Harvest Moon

 I’m 14 years old. I’ve been playing guitar for a few years, but I was struggling to get better. I played my guitar any chance I could get, but my favorite place to sit and play was up at my family’s camp in the Adirondacks. I used to sit on the concrete porch of the old hunting camp - We called it The Miller Camp, named for the family who originally built the old farmhouse back in the late 1890s. In the summertime that old concrete porch was a nice place to sit outside and play - There would be all kinds of people coming and going, and someone would stop to listen to me play. One of the members of the club, Rick, played guitar too and I used to look forward to seeing him when we would go up. I never knew when he was going to get up so it was always a treat when I saw him. He was one of my early guitar mentors - A few years earlier he had taught me the first song that I really knew, Horse With No Name by America. The song really only feature two easy chords that you could play with just your first two fingers on your left hand. E minor and D6/9/F# - I know the second chord sounds kind of big, but I didn’t even know the name of it at the time. It was just a kind of D chord to me. Anyway, I digress; I played that song so much, Just trying to get the rhythm and inflection right. But this summer when I saw Rick, He taught me a new song - And the first song I ever learned in what is known as drop D tuning. Rick was a big Neil Young fan and he had just released a new Album, “Harvest Moon”. Rick showed me how to play the title song, and after some learning and jamming, I began to play that haunting song. I remember thinking of the time that I’ve never heard anything so beautiful. 

I still play that song to this day, And every time I think of Rick. But I also think about everything that I’ve been through in those over 30 years and how much more pertinent the content of that song has become to me. Music that travels with you from boyhood to adulthood has a real special place in the heart. Earlier this evening, I was feeling a bit down and alone. I don’t play my guitar much these days because the neuropathy in my left hand has gotten very bad and it becomes difficult to play sometimes. But I picked up my guitar and I tuned my low E string down to a D and I began to softly play that song. Suddenly, I didn’t feel so alone, and I felt all the years of joy that music had brought me stir inside my old heart. And for a second, I felt like I was sitting on that old porch again - a young man with his whole life in front of him, strumming beautiful chords to a song that a wonderful mentor taught me. I’m so glad my life has been full of these little beautiful moments. And as I stared up at the moon this evening, I realized how lucky I have been in so many ways.

Circling the Drain

 Lately I've begun to feel like I am circling the drain.  The end has always loomed over me large the last 22 years but more and more I get this awful sense that my time is nigh.  I hate it. I'm not ready.  I have more to do, and I need to be here for my kids.  But I'm in so much pain every day. It's becoming harder to function. All my creativity is sapped. I feel like i have no more stories to tell. My can't play my guitar. There's only pain.  My body is wracked with it. Chronic pain is consuming and it's biting the last bits off now.  I only feel semi normal when I take pain medication, and I don't like to do that.  It's becoming almost untenable.  I hope I can fight through this and pull myself up again, but... I dunno.  It's been a long fight. I'm tired. I'm scared. I'm alone. It's hard. Writing these words out makes me feel better because at least I'm acknowledging these thoughts so I can deal with it.  My back hurts.  My feet hurt. My knees hurt. My neck hurts. My arms hurt. My fingers lose more feeling everyday - no normal sensations, only pain. 

June comes around again

 It’s the middle of the night and it’s a warm night, not a hot one, but still, I have not yet fallen asleep and it’s almost 2 in the morning. It’s this time of night my mind seems to run wild - Sometimes it feels as if my mind is free at this time. Free from the restraints that my failing body keeps it caged during the day. In my youth, I always used to think of this time as my most creative. I did a lot of my creating at this time - be it writing stories or essays or composing music, This time of night has always seemed to feed into the river of creativity. 

I’m not really feeling creative right now and I haven’t been feeling creative for a long time. I haven’t written anything that I have been in love with in a long time. It has become difficult and almost impossible to play guitar very much; The neuropathy in my left hand has rendered it almost completely useless. I played a little guitar up at camp this last weekend and I got to a point where I could barely form an E major chord. Betrayed by my own body. I’m thinking that it has to do with some pinched nerves in my neck and spine from all the spine issues I have. I’m still holding out hope that I can get that taken care of and that maybe I can at least get that part of my life back. Sometimes I feel like I’m whittling down to nothing. Like maybe I am going in to my back nine of life. Maybe this is my ramp out. And I get to slowly lose everything that I used to love about life. It’s not a comforting thought, and I can’t succumb to that. I have to think that if I fight, And I work towards it I can regain some of these things. But the fight has gotten so much harder, and it is hard not to become overwhelmed by a sense of despair. But I’m trying real hard not to. At least I had the good sense to type this out right now - I feel like this is one of the first big spots of writing I have done in a while. 

My body seems to fail more and more every day. I’m tired. I’m hurting all the time. And I don’t like to admit it, but I’m very lonely. I’m so lucky I have my children in my life because I don’t know if my heart would be in it if they weren’t around. They are a very big beacon of light and they are definitely what keeps me going. I know people say this kind of thing all the time, and in my case, it’s absolutely true. They are what keeps the blood pumping through my heart. I hope I can find some joy in life again outside of that too, though because that’s important. I would like to be a well-rounded human being And I have to remember to keep trying to do things that I love and things that make me feel alive. 

Spinal Situations

 So yesterday I got an epidural & steroid injection in my spine to help relieve pain & pressure along my very herniated L4-L5-S1. It had gotten really really bad to the point where I was using a walker for a while, and even had to be wheeled into Dialysis in a wheelchair because it was both so painful to walk and I was so anemic that I was exhausted taking a few steps. So I was rather excited to have this procedure done, and to see what kind of results it would give me. I may still need surgery in the future, but for now I wanted to see what this would do. I have had it done in the past with varying degrees of success ranging from very helpful to not so much. It all seems to depend on where the doctor decides to place the needle and we had a good conversation beforehand about where we should do it this time and I think that we chose a good spot. It seemed to go very well and even with sedation, man, did I feel it when the needles went in. But after that initial minor discomfort, I have slowly started to feel better over the course of the last day. I didn’t sleep very well last night, but that is to be expected after an injection like that. However, I did notice that all the times I got up and down and walked through my house in the middle of the night, I was already walking better and significantly less pain than I have been. So I am looking forward to seeing my progress over the next week and maybe I could actually get back to being able to walk like a somewhat normal human being. Right now walking anywhere leaves me a tremendous amount of pain, and you grit your teeth & bear it, but it is nice at the moment not have so much pain. I’m actually looking forward to walking into Dialysis today. I’m using a cane for balance because nobody wants this gigantic body of mine falling anywhere but baby steps towards a more normal life. Whatever that means.

I’ve also attached Venmo info to those who might wanna help a bit. Medical bills still coming in and while I have coverage, it doesn’t cover everything. Every lil bit helps. Thank you. 

Venmo:@StevenA519

https://venmo.com/u/StevenA519

GoFundMe & other Updates

 If you didn’t know, I have had a gofundme that my friends set up years ago; it is, I’m going, and I often post updates there. It has really helped me out over the past six years and I really can’t say how thankful I am for both its help & the dedication of my friends from all around the world. They have a cheeky saying in regards to it and they’ve held benefits called “Stop Dying Steve” which makes me chuckle. Honestly, good friends have gotten me through a lot and I’m so thankful.. and lucky. 

https://gofund.me/972fd5ad

There it is if you’re curious. 

Middle of the Night thoughts

 

I fell asleep watching a movie earlier tonight, and woke up with a start not too long ago. I was dreaming that my Transplant still worked & life was relatively normal. I don’t know if I have properly expressed how devastating it is to watch an organ transplant slowly degenerate. I think because you just have to keep pushing on in life, because I have so many other obligations, I may not really have given time & space to process & mourn the loss. It’s the death of hope and any sense of normalcy… and I’m incredibly sad about it on top of everything else.

Thankful

 Recently, I read a post on social media, detailing the people we have lost from my class, and other classes near mine.  I was just glad I wasn't on that list yet - we've lost a lot of great people I went to school with... it's a sad fact of life that this happens more as we age, but I'm still sad at the losses.  Good people, good families... life is tough.  But I am glad for every day I have above ground - even the hard ones.  And there's a lot more hard days lately... but I'm still glad for them.  Each day is another opportunity to maybe do better, and each day is definitely another opportunity for me to spend time with my kids.  Anyway, just want to say thanks again to everyone who makes my time here worth living.

Dialysis Life

 Dialysis life is rough life.  Hemodialysis isn't easy... and it's definitely weird to think that I can compare doing it in my 20s to doing it in my 40s.  It was definitely hard both times, but man, it was easier in my 20s.  It takes a lot out of me now.  And yet, I have more responsibilities now... it's difficult to juggle them sometimes.  I am really lucky, because I have a great support system on this now.  My parents help me a lot, and I'm grateful for it - but it also leaves me with a big sense of sadness, because I wish I was the one giving them the assistance.  Or giving them gifts, at least,  One part of being chronically ill that is so hard is knowing that you are a burden on the ones you love.  As a parent, I understand the need and want you have for your children, and because I was lucky enough to be born into an amazing family, they give so freely of themselves. But as an adult, I don't like to be a lodestone on anyone's life... but there's just so much I can't do on my own.

I'm hoping that I can make this time in my life temporary... and maybe I will get another transplant, and this one holds and I can start a better life for myself.  But that idea is way more daunting at 45 than it was at 25. After I got through the whole difficult process of getting a new kidney, having surgery, recovering and moving on... I basically have to start all over again.  It's hard to look at.  But I still have hope.

So, throwing this out into the digital void, thank you to all friends and family who help carry me in these times.  It's not so much for my sake, but for my children.  You help me provide them with as "normal" a life as I can, and that... I am forever grateful for and surely unable to truly pay back.  But I will try.

The Arrows of Time

 I'm 45 years old this year.  It looks like a daunting number when I stare at it; it's even more daunting when I think about the fact that I've spent nearly 21 years of my life living with End Stage Renal Disease.  Almost my entire adult life - and the fact that I was diagnosed with this disease at a time when I was trying to build the foundations of my life, and find my way... it's made it incredibly difficult.  I thought I was building my future for many years, and I started my own business and was supported by my family.  But it was difficult to do that while navigating this disease, and even more difficult when my transplant failed and I went back on dialysis, and a few years later when my marriage ended.

I got a third transplant in 2020, and I had a lot of hope riding on that - that I could rebuild my life again with that, post marriage, and get back on track again. But that transplant ended up being more trouble - as it began having troubles almost immediately after getting it.  I spent almost three years watching it slowly fail... it's hard to build your life and career when you're sick all the time.  So here I sit, 45, on dialysis again, trying hard to make sense of my life and how I'll take care of myself and my family.  I just feel like I'm starting over... again, and I don't really know if I will make it this time.  It's a scary thought.  I'm trying to deal with it the best I can, but it's hard.

I struggle everyday to be a good father to my kids, and I think that's the most important thing to me.  But it's hard now - making a living to provide for them, while have limited physical and mental resources due to my illness... ugh.  Such a struggle.  I'm trying.  It's hard for me to admit these fears, bit I think writing them out like this helps.  I don't even know if anyone reads this stuff, but the words help me.  Words have always helped me - I've enjoyed writing all my life and I think it's nice when anyone reads the things I think.  Sometimes what I say isn't always what I write either; perhaps I'm more confessional in the printed word.  I'm scared - I'm scared I didn't make the mark in life I wanted, I'm scared my time is up, and I'm scared I'll leave my kids with just legacy of sadness.  I hope I have more years with them.

Tomorrow is my son's 8th birthday. I cannot believe it's been eight years since he came into my life and changed it forever.  I know so many parents say things like this, but this is my truth. I didn't know if I could ever have kids, and to have one, let alone two, has been nothing but a miracle and they literally both showed me something I didn't really know I needed or wanted.  Being a father has been my favorite experience in this whole shebang - and I've done a lot of stuff! But their presence in my world has enchanted me in ways that everything else just did not - and I'm addicted to that feeling.  And now I'm in the worst way I've ever been - death is such a real possibility for me in a way I've never been afraid of before; I want to be here for them.  I don't want to miss a thing.  We don't often confront these things as we go on our business day to day, but it's all I think of when I wake and when I lay myself down alone at night to sleep. How am I so old, yet so young to be sad at a possible early exit?

I do hope I can get another transplant.  Or maybe that robotic kidney they've been working on for decades will actually work.  Sigh.  Also, I could use a win on the lotto.  Couldn't we all though.

Hope the season finds you well, if you're reading this.  Take care.

Now & Then

 As my mind is wont to do when I'm spending time alone with myself, today I found my thoughts randomly wandering through memories, and for some inexplicable reason, I found myself remembering an old "video game" console from the 1980s called "Action Max".  It was from a company called World of Wonders, who had success with Teddy Ruxpin and their "Lazer Tag" game... this system was weird and unique in that the games were on VHS tapes, and you hooked a console with a light gun up to the TV, and attached a device to the corner of your TV so it could sense the light gun hit the targets that showed up on the TV.  World's of Wonder went bankrupt, and the system never caught on, but my parents bought it for us one Christmas, probably on sale as they pretty much fire-saled their entire inventory after the market crash in '87.  I digress.  It was still cool to me and my brother - they got us the system and all four available "games" on VHS.  I remember hooking it up and being enthralled for days, until we moved back to our trusty NES (and Atari 7800). The system became forgotten by the public, and by us... but the memory of that gift and that Christmas has never left the halls of my memories. I just remember being so excited.

And now, I can look back as an adult... and think about how excited my parents probably were to get that and give it to us.  We all want to connect with our children, and make them happy.  My parents knew how much I loved video games - as a kid, I was obsessed with them.  They were pretty much the only thing that made me happy then. I didn't connect to others things that kids liked at that time - I was terrible at sports, I didn't like to go outside much at that time, and I was struggling with school. But video games made me happy. It wasn't just a gift - it was a parents way of saying "I see you."  And, God, I feel that so much now.  With my children, I strive so hard to do the same there.  There is this boundless love inside of us, and it exists outside the normal workings and stresses of life - jobs, careers, bills, etc. It's so huge.  And I learned that from my parents - and I try so hard to pass along and share than love that I was given.  And I think back on these small memories, and I think about how goddamn lucky I was to have my parents.  I was not always the easiest child, but they loved me so.  And, honestly, it's that love that's kept me alive through all of my struggles with my health.  Twenty years; practically my entire adult life.  God, I am so lucky.  Despite all the hurdles thrown at me, and experiences I would not wish on anyone, I am so lucky. And I am so happy that I get to pass on that love to my own children.  I love watching their faces light up when I engage with them.  And the hugs and "I love yous" we share with each other every day are just so precious to me.  I hope someday, when they look back on me, they can see how much this all means.  And how it's a chain that's come down generations - and how fortunate we are, all of us, to be family.

Getting back into it.

 Dialysis is hard.

Not only is the procedure uncomfortable, but the lifestyle is rough.  Switching gears from my transplant where I had to drink at least 2L of water a day to where I must try to drink only 1-1.5 L of fluid, total, a day, is so hard.  Fluid is everything - coffee, water, milk, juice, soda, etc.  You find that it adds up quick - and one of my favorite things in the world was drinking a very large glass of water with an absolute ton of ice... and avoiding foods high in potassium and phosphorus.  It's just difficult to switch the gears.

The process is disruptive as well - I go into dialysis at 6:30 AM... so I get up every Monday, Wednesday and Friday, get the kids lunches and backpacks ready before I head in.  Then the process is four hours long - plus the time it takes to put you on the machine and off.  It's a grind.  And afterwords, as of late, I am absolutely wiped.  I'm not as young as I used to be, and its harder now than when I was 24.  But I'm doing it.  I feel a little more like myself, but I still feel like the shadow of the person I used to be,  It's just been difficult - I feel more alone than ever.  But I'm trying hard, because my kids are just so cool. They're looking forward to Halloween... and then Christmas after.  I hope Christmas is good and fun this year.  I just wanna be their loving and fun Dad.  That's the best gig I ever had.

Back on Dialysis

 This summer, I took my kids out to breakfast, and at the restaurant, I stumbled and fell into a set of metal chairs... hard.  I ended up with a basketball sized hematoma under my arm, and after spending several hours in the ER screaming in pain, they finally admitted me and I had surgery to remove it.  I spent about a week in the hospital recovering, and during that time my nephrologist said it was almost time to go back on dialysis. When I got out, I was in rough shape, and a few weeks later, I developed pneumonia in my right lung... I ended up back in the hospital, courtesy of an ambulance ride...  I was put on a breathing machine, and my pneumonia treated... and after a few days, it cleared up, but they put me back on dialysis.  I spent a week in the hospital, again... away from the kids, away from life. It's really hard, especially being a single Dad now.

When I got out, I had to wait for a bit before there was an open chair at my dialysis center, but one became available, and I have been back on hemodialysis since late July.  It's been tough readjusting.  I'm trying to get my bearings in life, and I'm looking into another possible transplant at Strong Memorial Hospital in Rochester NY.  I'm trying to hold on to hope, but this has all taken a great toll on me, financially, emotionally and physically. 

I'll be posting updates on my GoFundMe, which has been running for five years because of the grace of my friends.  It's definitely saved me many time, and I'm so thankful for the help I get. GoFundMe Link Here 

 

I feel so sapped of everything... I am a writer who feels out of words... which is just not a great feeling.  Hopefully I'll find myself again, and hopefully I have many more years to spend with my kids.  They just went back to school... I can't believe how big they are now.  Time flies, even when you're dealing with a situation like this.

 

Thanks to all who read this...

Just more absolutely bad news.

 

Last week, I had a meeting at the transplant clinic, to re-evaluate me to get back on the transplant list for a kidney. The first time I did this was exactly twenty years ago, so it was kind of a weird homecoming. My father went with me, and we felt like we had a good meeting - everyone who came in seemed to know my past, knew my medical history, etc. There were two people on the team who had been there for 20 years and known me every step of the way, and they were happy to see me. I left the evaluation, after giving copious amounts of blood for testing, feeling good. I knew it would be more difficult, being that it would be my fourth potential transplant.

 

I have lived, breathed and slept kidney disease, dialysis and kidney transplants for two decades. Anyone who knows me knows that I have gathered an extraordinary amount of knowledge on the subject, and I've talked about it at length to anyone who will listen - I've been published in national magazines about it, been on national television, and had my work published in a best selling anthology book series (Chicken Soup for the Soul). I've given lectures about kidney transplant and dialysis. More importantly, I have survived and thrived for twenty years with End Stage Renal Disease (ESRD). That's full kidney failure, for which there is no cure. Transplantation is not a cure - it is just another, better form of treatment. I have had my complications with it - my first and third transplants in particular. The first being damaged by a follow-up surgery that went awry and my third transplant having had damage that was undetected before implantation.

 

On Friday, as I was getting my kids ready to go out and do something, I got an offhand phone call from the transplant clinic - I thought at first it was just them calling to confirm a CT scan they had set up for me. Instead, it was someone I did not know telling me that they had discussed my case at "committee" that Friday, and they had decided to decline to give me another transplant.

I had prepared for this eventuality - and while it hurt, I had other plans. There were other centers in other cities I could have gone to. But the next part is where I took extreme offense. This poor person who they had call me to do their dirty work said "They said it was because of a history of non-compliance..."

 

Denying me based on being fearful of the risk and potential for it failing and looking bad for their program... I could handle. But trying to put the onus on me and declaring me "non-compliant" had me seeing red. This is them passing the buck - putting it all on me, instead of them. Anyone who knows me knows that I am a traveling pharmacy - I never go anywhere without the cadre of pills required to keep my transplant from rejecting. I am a stickler for it, I even recommend a service I found that helps people take their daily pills (a pharmacy that sends medications labeled in packages for each time of the day, it's called PillPack. Amazon bought them a few years back, but I've been using them since well before that) When I was a dialysis patient, I never missed a treatment. That's being compliant - people are often very flippant with dialysis, many skip treatments, etc. I couldn't. I knew it would kill me. One does not survive for TWENTY years with ESRD by being non-compliant.

Labeling me as such puts me at odd with other programs; it goes in my chart. And any hope for me to get a new transplant at all could be squashed. This is a tarnish on my name.

I don't want to die in the chair of dialysis. I will confess, I have nightmares of this - I do not do well in dialysis, and I know I will have to spent the next several years on it again. I dread it. It will be a giant burden for me, and for my family. I'm not alone in this; I have two kids I love more than anything else in this world with me, and I just want to be there for them and be the Dad they deserve. This news has just broken me - it hasn't been easy since my last transplant; it never worked right, and though I've been off dialysis, I've been sick a lot, I've had multiple uncomfortable biopsies, and my issues with my spinal stenosis have gotten worse. My mobility sucks as well. I'm trying my best, but this news has just beat me to the ground. I'm not ready to die yet, I'm not ready to give up, but my decline is inevitable. Proclaiming me non-compliant in the face of saving their own face at the transplant clinic is tantamount to a death sentence, and I can't have that. 

 

Anyway, I just want to thank you all for your support, love & friendship. I've not been in this journey alone for twenty years - it takes a village to raise and idiot, and boy... am I that idiot. So many people have given so much of themselves just to push me along, and I am so much more thankful than I can ever say properly. Thanks for reading all of this and thanks for being wonderful. I'll keep fighting, best I can. I'm still waiting to talk to someone official from the transplant clinic on this.... but right now, it feels quite bleak.

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. 

~Steve

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.

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.

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.

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.