The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Sunday, December 27, 2020

A solitary Christmas

 For the past decade or so, I'd always write some kind of post/missive about how lucky I was and how much I enjoyed the holidays - memories of the past, and the promise of the present.

This year was so much different - this year was the first in 14 years I spent apart from my wife.  And I must be honest here, it hurt so much more than I thought it would. I really struggled to get through the season.  I'd come to associate this time of year with family and love - and how lucky I was to have her and later our children in my life.  But with Covid keeping me apart from my extended family, and the dissolution of my marriage keeping my family separate.. it's hard.  I wish I could fully enunciate how sad my soul was this year - and how much I struggled to keep it together, keep it merry and fun for my kids, and try my best to feel what cheer I could of this season.  We'd arranged it so I'd have the kids the day before Christmas Eve and most of Christmas Eve day; I'd bring the kids back to her the evening of Christmas Eve and they'd spend Christmas Day with her and her family.  So Christmas happened on Christmas Eve in my house.   I'd wrapped a few presents I'd gotten, and my parents brought some over that they got.  I made sure to stuff their stockings full of little gifts and candy.  I put on Christmas music in the morning and they excitedly opened presents... We played with toys.  They seemed to have fun; my parents came over and gave them gifts. But for me, there was a joy missing. My wife brought a real love of Christmas into my life,  and always seemed to bring the joy of season into our house. That was missing in my life this year, and it was sorely missed.  After I took the kids to her, I came home, and saw some of the Christmas Carnage - wrapping paper, toys strewn about.  Half eaten candy laying about. Christmas Music still playing - I noted my stocking.  Lovingly labeled "Dad" just sitting there, empty, devoid of anything where in previous years it overflowed with gifts.  Christmas Day, I spent alone. A lonely man, in a cold lonely house. No presents to open.  It was really difficult, and probably the lowest I have ever felt.  Losing something like that in your life is so hard.  The little things you used to have in relationships mean so much more when they're gone.  I hope the coming years I can re-find my joy of the season.  This year, I had a lot of sorrow in my heart, and that's hard to live with.  But I'm trying to focus on the good in my life. It's hard, and I'm gonna need a minute to indulge and acknowledge the sad before I move on to a new life in 2021.  I know this year has been hard on so many.  I just pray that the next year is better for all of us, and we all find just a little bit more happiness in our lives.

Tuesday, December 8, 2020

Dealing with Sadness in a time of Great Salvation

 So, I'm four weeks out from my transplant.  I haven't sat in a dialysis chair in four weeks.  I feel better - different every day.  The fog I lived in is lifting; my brain/mind seems to be gaining some clarity and my mental acuity seems sharper.  Dialysis brain is a real thing - it makes it hard to concentrate and focus.  I've been living in that fog for two years - and for years before that, I was living and dealing with a failing kidney.  I was looking at past labs starting in 2015, and it showed clear decline then - I went back on dialysis in 2018.  It's been a rough last five years.

And, I wasn't always at my best, and for certain my life suffered because of it.  And I'm dealing with a great amount of sadness and regret at how much I've lost and how I have to live with that now.  And now I'm on my way to a new way of life, a new health and eagerness.... and everything that mattered to me, everything I wanted to get better for.... is either gone or irrevocably changed.  

This month, the holidays, are tough.  I'm dealing with so much inner turmoil, and of course my emotions are amplified by the larger amounts of prednisone they have me on post transplant.  The truth is I have a lot to deal with - getting my life back on track. Personally, financially, work-wise... everything.  I'm 42 and rebuilding it all again.... but I have to decide what the the hell I even want to build at this point. I have the feeling the next few months are going to be interesting as I discover myself again - maybe try some new things, maybe seek comfort in familiar things... also, I need to take rest when I need it and let my body heal.

I'm just so... I don't know. I can't quite find the words. But I know I am dealing with a deep and intense internal sadness and conflict right now, and wrestling with that is difficult.  But I have done this before. Somehow, I'll go on, and maybe be better than I was.

Monday, November 30, 2020

The Memory of old National Geographics and other musings...


It's funny what triggers memories; and how memories can be so intrinsically tied to a person. I saw a picture of someone's collection of National Geographic Magazines, and I remembered being a child and over at my maternal Grandparent's house. In the basement, my Grandpa had built these shelves on one side of the room, and filling them were loads of National Geographic Magazines dating back years and years... I still remember the distinct yellow color of the binding, and I remember the way they smelled... that old book smell, but slightly sweeter. I was obsessed with the world at large - living in a small town like Minoa, knowing there was a whole wide world out there was something that just intrigued me to no end, and pouring over his back issues of National Geographic was a way to see the world without going anywhere. And it was interesting to see how the world changed and how the journalism changed over the many decades of writing. The look of the magazine remained essentially the same though over all those years... yellow binding/cover - a photo shot, and the words National Geographic emblazoned on the front. I was lucky that he let a grubby little kid like me peruse his magazines - I could have easily destroyed them unintentionally just by being a kid, but I think he could tell my thirst for knowledge and the adventure that came with it was something that drove me. I'll never forget those magazines, in that room in the basement - the same room our large family huddled into for Christmases and other holidays. The room we still huddled into year after year as my Aunt and Uncle bought the house when my grandparents decided to move. The magazines were gone, but my Uncle put something just as important to me in their place: his collection of Vinyl record albums. And, as an aspiring teen musician, I was only too happy to comb through those records, look at the covers and inserts and my Uncle was only too happy to play the music I'd find. It was another adventure I found, and the notes from those albums still ring in my ears today. When I think about it, I went a lot of places in that basement without actually moving. It's almost like a quantum meditation on learning, really, and I still feel that every time I get to step into that room.
So, yeah, just seeing a picture of a collection of National Geographic Magazines sent me off on this memory tangent, but it's beautiful that I have this memory stuck in my mind. I'm glad my brain is cluttered with these kinds of moments, because in the end, that's all we have. The memories of those moments - those great moments, big and small. And I was lucky enough to remember to catalog what could have just been a mundane moment in life, for now... it's undeniably precious.

Sunday, November 29, 2020

 I'm still processing the fact that I've had a THIRD kidney transplant in my lifetime.  I was 25 when I had my first, 33 when I had my second, and 42 when I had my third. Where has the time gone in my life?  

For a few years there, I thought I had it all.  2020 changed everything.  I lost everything that was important to me, and yet here I've gained my life and my freedom back.  Now to rebuild.  But, I honestly don't know what I want in life for myself any more.  Outside of being the best Dad to my kids, I don't want anything else any more. I just don't.  All the things I chased when I was younger, success, money, acclaim... love. I don't want 'em.  I've been there, and lost that.  Don't have a desire to do that again.  I just want to live well, take care of myself and my kids, and try to enjoy what time I have left here on Earth.  

My body is healing, and the kidney is working.  It's going to take my soul longer to heal, I think.  I'm getting okay with that.  But from time to time, the pain aches in my heart and I have to find new ways to deal with it.  More positive ways.  Now, I'm going to try to be more active. Play more music. Go on more walks when I can. Play with my kids. And learn how to laugh on my own again.

Sunday, November 15, 2020

Wonder of wonder.... miracle of miracles.


It was a week ago today, I was in the kitchen cooking breakfast for my kids. "Pigs in a Blanket" - I'd put Banquet Sausages in some crescent roll dough and bake 'em up. The boy loves to dip them in syrup. It's a treat for a breakfast, we were having a nice morning together after a day the park together the day before; so when the phone rang and I saw it was the transplant clinic, I thought it was just them calling to schedule a couple of exams I needed for my yearly checkup - an EKG and Chest X-Ray.  I'd been in recently for an ultrasound, but still needed those few tests to round out my yearly maintenance on the transplant list. But my coordinator on the phone asked me what I was doing.
"Oh, you know, making breakfast for the kids, getting ready for dialysis. Why, what's up?"
"A kidney has become available, and we need you to come up and give a current blood draw for it. We need to see if you're still a match, because you're number one in line for this." 
It was like the world stopped for a moment. I could hear the blood rush in my ear, the sound of my kids playing at the kitchen table suddenly became an octave and decibel lower.
"Uh, okay, I'll get someone to watch the kids and I'll be right up."
"See you soon, Steven."
I hung up my phone, and tried to calm myself. This had happened before. Was probably routine. Stunned, I called my parents to see if they could watch the kids, and I went up. I knew I was highly sensitized after two previous transplants and blood transfusions this summer, so I didn't hold out much hope.  I quickly drove up to the hospital, parked, and walked inside the both newly renovated and newly placed COVID-19 protocols. I'd been walking in the doors of this hospital almost 18 years.  My first transplant there was in November of 2003.  I checked in, went up to the lab and they drew my blood. I went home, changed, hugged the kids goodbye, as they were going to their Mom's that afternoon, and I went to dialysis.
I sat for hours in the chair, trying not to think too much about it. It was hard, but dialysis is always hard. At the end of treatment, I still hadn't heard, and they took the needles out and wrapped up my arm when my phone rang. It was the clinic. Everyone there knew I had been called that morning - I could see the staff begin to edge in toward me. My coordinator asked what I was doing. I told her "finishing up dialysis" and she said "Well, we'd like you to come up, because the kidney is a match and we're offering it to you. Can you be here in an hour?" 
"Yeah," I said aloud, "I can be there."
The staff smiled and began to bubble. I hung up the phone.
"It's a match. I'm getting a kidney tonight," I said.
The staff erupted into cheers, and suddenly I was surrounded by a massive hug from everyone I'd come to know at my dialysis center. I walked outside in a daze, got in my car, made a Facebook live video, and went home. My parents dropped me off at the hospital a little bit later. 12 hours later... I was having a kidney transplant.
It's still unreal to me, and I really cannot stress how thankful I am - the support I've had over the years and again especially this last week... I don't know if I'll ever be able to adequately describe how I feel. But I'm so grateful for this new lease on life and I can't wait to keep going and keep getting better. Thank you so much.  It's been one week since I woke up with a working kidney. I'm healing well. Things are working. And I feel so much better all the time. It's amazing, the difference between life on dialysis and life with a transplant.

2020 was very, very hard for me. I lost so much.  But I finally feel like I have a fighting chance to gain something back.  I am looking forward to my new life.

Thursday, October 29, 2020

Such a small organ, such big problems.

 Physically, the kidney is kind of small.  It's just one of the miracles of the human body that this little organ is packed with millions of cells that work in tandem with the rest of the systems of our body to achieve homeostasis.  Most people regard having to urinate as an annoyance to their day; a stupid bodily function that disrupts their day.  But it's really a miracle of system efficiency.  It's part of a system that filters the blood, gets rid of wastes and removes excess fluid so your body can function.

When you don't  have kidneys, everything is out of wack and it makes living difficult.  I'm amazed that science came up with dialyzing blood - but even that is only efficient enough to keep people alive; it has to try to do a semblence of what a kidney does 24hrs a day in 4 hours.  It can't come close, but it keeps us alive.

I just hate to know my existence is ruled by the lack of functioning kidneys - those tiny organs. But it's been this way for 17 years. Almost 18 now.  But I hate it, and ultimately it has ruined my life.  I can't say I don't think there are times when I wonder if it would have been better to die in 2002. I've suffered a lot of pain in my life over the last 17 years, both physically and emotionally.  There have been good moments. Great moments. But right now, my life is so crappy I wonder if they've been worth it.  The pain lasts, and the good never stays.

Saturday, October 17, 2020

Instagramming it

 I noticed that my instagram account is a lot of selfies.  It happens, I guess, when your life becomes a lot more about you - my pics, if they're not selfies of me in dialysis or in my life... they're of my kids.  Right now, this is a pretty good way to look at my life - for me, it's all about me, how I'm feeling or my kids and what they're doing.  I know there will be a time when my pics are more varied, but I don't know if I've gotten there yet.

Saturday, October 10, 2020

Finding my place... again.

 I'm trying to find my place in the world again.  For 14 years, I knew where my place was and I was quite happy with that.  I tried to achieve some goals and some personal dreams, but I knew my place.  I had a home, I had a heart no matter where or what I was.

But that's changed, and I'm twisting out in the wind again, an adventurer without a home trying to find his place in the world. It's a scary time to be doing that.  It's even more scary when you're on dialysis and you'd like another transplant.

Even thinking of the future - getting a transplant. I'm doing it alone again.  The surgery, the hospital stay, the recovery... all alone.  Last time, it was easier - I had a confident, smart and capable partner that kept me on track, and helped me when it was tough.  I can do it alone, I'm sure - but I'm not looking forward to the struggle.

I guess because I've been struggling for 17 years.  I'm tired. Part of me is near the end of my rope.  Part of me wants to give up, and not go on.  But I can't. I've got responsibilities.  My kids needs me - and they WANT me around, which I absolutely love.  My kids really love and adore me and I want to be the best Dad I can be to them.  I want to get better, I want to get my career back on track and I want to provide the best life I can for them.

Their mother and I are getting along in our co-parenting; which I'm happy about.  Who knows what the future brings for us all, but right now it's okay.  I miss her as a constant in our lives, but honestly the girl I married is not the woman who is here today - she's, as they say, on her own path now and it's divergent from mine.  At least we both still immensely care about the kids.  I think we're working our way to having the friendship that was so amazing during our relationship and I hope as years go by we can build that.  Our kids are special, and their Mom and Dad love them very much.

It's a dark time. I could use some light.  I could use a win.  I really could. But I'm holding on.

Wednesday, September 23, 2020

Four months in...

 I am still sad, though life goes on and I am more adjusted to my new life.  Every now and then I'm consumed with thoughts on a 14 year relationship that is no more - and how I have not moved on as easily she has seemed to.  I don't know how people do this so often.

This is honestly making me even more cynical than I already was, at least about interpersonal relationships.  It's just hard to keep a positive focus - but I am trying.  My future is so uncertain, and not all that great, but I'm going along.  Trying to be the best father I can be to my children - they are the sole source of true joy  in my life now, and I'm just so thankful that they're wonderful people.

Tuesday, August 25, 2020

Three Months On

 So, I've been riding solo for three months.

I'm going to be honest - it's been straight up hell.  I don't think I've ever suffered a loss this large and profound, and moving on has been very difficult.

I loved my wife very much; for years, she was my best friend.  I shared everything with her - when I heard a joke, I used to get excited to get a chance to tell her. A smile or a laugh from her was more valuable than anything.

So when you lose these things... let me tell you, all the riches in the world aren't worth the feelings I had when we were together and happy.  Life is more than a collection of great moments, and reality and responsibility often come crashing down on you. And people change. Things change.

I'm still finding my place in this world, alone, and with this tremendous sense of loss. It inspires sadness and anger in me, and dealing with those is a complex issue. 

I can tell you, unequivocally, I have never been more sad in my life.  I am sad to the point where I wonder if I can carry on.  I know I will - I have to. We have two wonderful kids who love me and need me... and I need them.  But I am profoundly sad, and I do often wonder if I will ever feel the kind of happiness in my heart I once felt.

I know a lot of people go through this. I know a lot of people hurt.

It's rough.

And I'm still on dialysis. I still need a kidney.  I have never been this defeated.

but I will rise again.

Phoenix from the ashes.

Kidney Boy rides on... let's hope I get a kidney again. I get healthy. I get happy, and I remain a good father to the kids I love so dear. And I hope I find peace in being without my beloved.

Sunday, May 31, 2020

The Kidney Boy Rides Alone.... again. (Naturally)

Two weeks ago, my wife came home and told me she was moving into her parents house. We've been splitting time with the kids ever since, and through therapy, I've come to accept that our marriage is over.  Lord, it's tough.  This is pretty common for people on dialysis, though.  The fact that we made it through the first time was a miracle.  Sometimes life is just to complicated, and even the purest love can't overcome the problems of circumstances.

We're getting along now, and I'm very happy for that, because we've got great kids.  And I really do love her - but we can't be miserable and fighting. Losing love sucks.  It sucks a lot - and it's going to be a long time before I am really ok.  We had 11 years of marriage and almost 14 years together.  That's the longest thing I've ever had in my adult life. Where I'll go now, I am not so sure.  But I'll go there with our kids, cause they're amazing.

But for now, there's going to be a lot of sad songs playing in my house.

Saturday, April 4, 2020

Dialysis in the Covid-19 era

I first did dialysis in Jan of 2003. Over 17 years ago. How I am as old as I am now, I haven't a clue - it's been a ride.  Years of dialysis. Two kidney transplants. Countless other medical problems as a result of my ESRD.  I've seen so many doctors, it's unthinkable.  Yet, I remain.

I started this journey as a 24 year old kid. A scared kid who soldiered on nonetheless.  Now I'm a 42 year old man, father to two children, husband and still that scared kid soldiering on.  It's been hard.  In October, I'll have been back on dialysis two years. And for two years before that, I had to watch my kidney slowly degenerate and there was nothing we could do about it.

And now... Covid-19.  Everytime there's a news report and they say "The most affected are these people..." and I realize that I am in that illustrious catagory.  It's scary as hell.  I worry about getting it. I worry that if I get it, will I be strong enough to beat it? I've read reports of people seemingly young and healthy contracting it and dying.  And I am scared.  I try not to be. I soldier on - in these days of isolation and flattening the curve, every other day I go to my dialysis center. I wear a mask, do my treatment and go home.  Try to be strong for my kids - sweet, innocent little ones.  They're too young to really know what's going on.  They do know Daddy goes to dialysis.  And their Mother... she works at a hospital.  And it's only getting worse.  We're not even into the peak of this thing...

I don't know who reads this anymore. Or if anyone does.  But I hope we all make it through.  And if I don't....  I hope my life was meaningful enough.  I don't feel like I've left my full mark and done everything I want to do.  But we don't often get to pick that. We just have to do what we can with the time we are given.  Stay safe, and be kind to one another. We're all we've got.