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.

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.