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, April 17, 2023

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