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