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.

Thursday, November 17, 2022

Running Out of Time

 I am reaching the end of my time.

I feel it in me - and my lab work shows the same. This last transplant is giving out - it has been since it was implanted.  Sometimes transplants work out great, and other times - through no fault of the donor or recipient, it does not work out as you hope.  The kidney had issues shortly after I got it, and after several biopsies, they couldn't determine quite why, other than it seems the kidney had damage from the donor they did not detect.  But my time with this graft is nearing an end.  It's my third kidney transplant in 20 years - some people never get one, let alone me who was amazingly lucky enough to get three.  I might get relisted for another one, but I might not.  That's uncertain now; I need to be re-evaluated, and go through the whole process... again.  There's only so much a person can take - the thought of having to do it all again, all the tests, the waiting, the judgement... and then maybe waiting on a list, having to do dialysis again? And the rainbow at the end of that possible tunnel is ANOTHER major surgery on my abdomen - to be cut open again, have another organ implanted in me again, and hope that THIS ONE works for many years?

I don't know if I can do it. I just do not know.

I want to. I'm not ready to be done - I'm not ready to leave my kids, my family, my friends.  I've dealt with a lot of sadness, disappointment, pain, anguish, sorry and depression over the last few years, but - goddamit - I still want to be in this game.  Aside from my poor health, I feel like I have a lot more in me to offer this world, to the people in my life who rely on me.  I'm definitely beat down by all of this, and there are times when I want to scream.  I spend a lot of time alone when my children aren't here, and a lot of it, I sit in silent contemplation... trying to plan what moves I can make, what moves I want to make, and what moves I definitely cannot make. I'm sad, I'm cold, I'm lonely, I'm not in good health and I'm just not well, in general.  And I don't like to say that out loud or admit it - but I'm broken as hell right now, and nothing can really fix that.  There's nothing - there's no miracle big enough to occur to change or fix any of it.  People often have big dreams, dreams where everything is fixed... but, I don't dream that anymore.  At this point, I'd just like to survive and survive without being in a massive amount of pain.  Emotional and physical pain wrack me every day, and every day is a struggle just to make it from awakening to falling asleep.

I'm going back on dialysis.  I don't know when. But it's sooner than I like.  And I will most likely die on that machine this time.  So I'm just trying to think about how I want to spend my final time here - and I'm going to try and spend it positively. To engage in things I love and enjoy, and do the best I can, when I can. Days where I feel well enough to do so are few and far between, but I need to spend those days engaging in the things I enjoy the most about being alive. In spite of all the muck I wade in, I enjoy some things still very much. 

But, like so many suffering from chronic and fatal illnesses before me, I'm going to cry about for a moment about how unfair it is.  For a moment. I need to acknowledge that.  It's unfair. It sucks. It sucks for me, it's sucked for millions of others, but dammit, it sucks.  But I can't wallow in that - it's not a good way to spend time.  If you still read this blog - thank you.  Getting these thoughts out over the years has been special to me.  I've always enjoyed putting my thoughts to words - and in writing, giving them a physical form and shape.  Sharing my experience and having people who care about it has helped me immensely in the darker times, and right now is definitely one of those times.  At this point, I'm not looking for some light to save me.  I'm just looking to enjoy the spots of life on my trip down to the never-ending darkness, the trip we all take - but mine is coming sooner than I'd like. But I have survived longer than I thought I might.

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