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.

Monday, December 30, 2019


I saw an obituary in the paper today; it was the husband of someone I knew growing up.  My wife had told me that our mutual friend's husband passed away suddenly,  and it just hit like a ton of brick.  He was a year younger than me.  Just gone.  There's still pictures of them from Christmas up on their facebook pages.  We're here and then we're gone, instantly... leaving only the memories. 

I'm reminded of that old adage to live for now and appreciate what you have in the moment - it's so important to do that.  I often look to the future, off to the skies at the expense of the moment.  But I love all of it so much.  Sigh.  My heart hurts for our friend and her loss. 

Monday, December 23, 2019

The Christmas Season

This will be my 42nd Christmas.

I love the Christmas Season. I love the smell of pine, I love the homes decorated with lights.  I love the music that plays in shops when you're out and about; a musical myriad of different Christmas songs and different arrangements - some done in a classical music style, with orchestras blasting out the tunes of the season, or sometimes it's a pop arrangement.... sometimes its a folk arrangement, sometimes its an old crooner.  No matter what, I like the season.  I like the weeks leading up to the holiday and I like the anticipation for the holiday.

Most of all, I love spending time with friends and family.  I've been blessed with these traditions for over four decades now - and I have so many fond memories of getting together with my family.  Grandparents, uncles, aunts and cousins all getting together to celebrate the season and celebrate each other.

I'm so much older now, though, and I've lost people and things in my life.  I drive by my father's parents house often as I come home from dialysis. I glance over to that house on Washburn drive, now owned by another family making memories there, and I remember the lights my grandpa would put up outside.  I remember the Christmas Village my Grandma erected in the foyer as we all took off our jackets and boots. I remember the giant Santa Claus on the back wall of the living - a wall decoration that always hung for the whole season.  I remember the ginger ale, poured into cups with a diamond shape design on the outside. A treat for the kids that my grandparents always seemed to have.  I remember my aunt singing Christmas Carols in that beautiful soprano voice.  I can still her her vibrato when I think of the songs.  I remember the phone calls from my Aunt who lived out of town. How that 30 foot long twisty phone cord snaked around the room as everyone said Hi to Nancy and her family.  How we missed them at the holidays.  I remember sitting on the floor, playing with new toys among my cousins.  I remember the food - giant tables of it.  Homemade peanut butter balls my grandma always made.  I know I took these times for granted as a kid - it's all you know as a kid. But now, I have the gift of wonderful memories and feeling blessed that I was even a part of them.

I miss the people who have gone - my Grandpa, my grandma, my two aunts... I think of them fondly often, but ever so much more at the holidays. When I was a kid, I loved getting gifts - we all love the toys, the games, the gear that you can play with. But now, I appreciate the gift I have forever - the gift of them in my life, in my memories and in my soul.  In everything creative I get to do now, I realize there's a piece of them and the things they taught me and gave me. Boy, I miss them.  But letting them live on in Christmas, in me, and in my kids... that's a miracle.

I'm glad I got another spin on the globe to get here again.  I'm glad I have an amazing family - lovely kids, amazing wife and an extended family that is just beyond the best.  Merry Christmas to all. May we all have a great 2020 and try to make our world and the world at large a better, brighter place.

Monday, November 25, 2019

A year on dialysis. Again.

I should have posted this back in October, but my family commitments, dialysis, work committments, life commitments... well, they get in the way.

But, here I am.  Back on dialysis for another year.

Boy, this is hard.

This is really hard.  I've been doing this since I was 24 years old.  I'm 41 now.  I've spent my adult life dealing with ESRD.  Kidney dialysis.  Transplants.  Clinic Visits. Hospital Visits. Biopsies. X-Rays. Ultrasounds.  EKGs.  More tests.  Needles.  So much blood. Blood transfusions. Hospital Stays.  So many bouts of sickness.

I'm tired.  I'm tired of this life.  I know everyone in my life is tired of this life - my family.  My wife.  I know people say this as a cliche, but honestly I bet there would be some relief if I died.  Sure, there would be the initial sadness - but life goes on, no matter what.  Nothing ever ends.  I'm just not there.  The memory of me would be, and I would try to leave as many mementos of me around to keep me in their hearts - but the burden of all the rest... gone.  As hard as this life has been on me, I believe it's harder for those around me.  And this year.... well, dialysis has kept me alive. And I hope for another transplant.  But I wonder if I have a life to go back to.  I'm financially ruined. I'm not sure what kind of employment I'll find.  It's been nice to be here for the kids, but every Monday, Wednesday and Friday night I'm at dialysis for five hours.  I miss them going to bed.  I leave my wife alone with them for the evening after she's worked a full day.  It's just not easy for any of us.  And I have to vent.

I am sad. I am frustrated. I am just trying to survive.  But I am losing hope.

Wednesday, February 6, 2019


I get all my medications from a company called PillPack. It's really handy; they mail all my prescriptions to me in a box that contains daily labeled packets, each with the medicines I need to take at the correct time of day. It was really useful when I was on a lot of anti-rejection medications for my transplant. My new box came recently, and for the first time in almost seven years, the packs do not have the anti-rejection medicines. They're noticeably smaller, and the amount of pills I take a day has been greatly reduced. This is like the last gasp of my transplant era - a reminder that it's truly over, and a dream has died.
It is truly a loss that I am mourning. I am in stages of grief about this. My transplant was my miracle, my family's miracle. Getting that transplant kicked off a series of events which changed my life - there was so much riding on it. So many dreams - and my wife and I were lucky enough to accomplish many of them. The loss of this transplanted organ is huge, and I don't know if I've fully processed it. I probably never will - it's my second transplant, and I just turned 40. I've been dealing with this since I was 24, and frankly the fact that I am alive is a miracle. People die everyday from what I live with. I read about it often in many kidney disease support groups I am part of. I see it in my dialysis center when people I used to see everyday don't come in anymore. Sometimes it's because they got a transplant, but sadly the reason is more often that they have succumbed to the disease. My own mortality is more fragile than I probably let on in my day to day existence, but I am acutely aware of it. I am in a much more stable position now, being on dialysis for over three months. The new routine is difficult for me and my family, but we are managing. With a lot of help from family and friends, we are managing. But I am definitely dealing with my own personal sense of loss. Seven years was all I had with my miracle. The hope was that it'd last the rest of my life, and to only get seven years... when I was younger, seven years would have seemed like a long time. Now, though, even 10 years doesn't seem like enough time. There is never enough time, it's a truth we all know but hate to face. It affects me even more now though, especially when I spend time with my children. There is truly never enough time. I am glad I had the transplant for the time I did. But I want more, and I'm mourning my loss - the loss of my transplant and the loss of time. I have less and less every day. They say your life flashes before your eyes when you pass, and I know those moments will stretch into eternity for me and in that gulf of time I will miss everything and everyone so much. And for a moment, time will be all I have. For a moment.
Thank you for letting me talk about such things and being supportive to me and my family. Events like this would be unbearable without the love and caring we're surrounded with.