Coasting

 I have to get frank on here - my labs have not been good.  I had a biopsy back in Janurary that showed that my most recent transplant had damage - and they determined that it was from the donor, and not from me or anything I or my body's systems had done. The kidney just wasn't as viable as they originally thought.   I've since had another biopsy that showed the same results as the previous one - and my labs have been in slow decline ever since.

I currently have about 22% function.  I don't feel great most of the time - but this is really nothing new for me.  I've learned to live and function feeling that way - if the average person felt how I feel every day, they would not be able to function well at all. In fact, they'd probably think that they were very, very sick.  But it's normal for me, and I do the best I can with it.

Right now, my function will keep me off dialysis - which is amazing.  But I am bracing myself for the fact that there will be an inevitable return to dialysis for me, probably sooner than I would like. Or worse.  I also don't know just how long I might last on dialysis again.  I was in rough shape last time.  I just don't know if I can survive much more of this.  I have fought very hard for a long time.  Almost 19 years now of living with End Stage Renal Disease.  I can't afford to do the normal human thing and pretend death isn't a reality for me.  It breaks every inch of my heart to think I might have to leave this life sooner than I'd like.  At one point in my life, I was more sad for myself - I thought of everything I'd never get to do. Now, it's funny - I am sated with the things life has to offer me.  I have not lived some amazing life of crazy success and glory - but I have lived a good life. I have gotten to live a life of love, passion and creativity.  I have pursued interests that have made me happy and fulfilled - I have had things I've written published internationally.  I have created, composed and recorded music that was a true expression of my heart and expressed through my love of musical composition. I have created video games that have been sold internationally, and there are fans of my work all over the globe.  I've befriended a veritable army of people all over this planet - and they're all just such amazing people.  I mean, when I think about the friends I have amassed over the years, I get a little choked up.  A lot of amazing and good-hearted people thought this stupid kid from Upstate New York was worth befriending. I knew the love of an amazing person, with whom I shared many amazing adventures, laughter, tears and a journey through life together. I have two absolutely wonderful children, whose glory shines so bright, and who have captured my heart and imagination like nothing else in this whole experience of life has.  I have lived a good life.  It's all more than I ever could have hoped for. I couldn't have predicted this life for me when I was young, and every day since Jan 1st 2003 has been an absolute gift.  Even the hard times - the heartache, the sadness, the depression, the setbacks, the failures... it's all part of the experience.  And it's all mine. For better or for worse, it's all mine. 

Right now, as I've said, I just want to hold on as long as I can. My children just started school.  I want to be around for them as long as I can.  I don't want to be a little spot, a dot in their memory.  I want them to look back, and think lovingly and fondly of their father.  I want the thought of me to be one that inspires love, comfort, support and inspiration.  I don't want to be something they recall as a long distant part of their past.  I am so upset that I will have to give them this legacy in life - being a chronically ill father makes me so upset in that I have saddled them with something even before they were born. They love me so much; I am so lucky.  I try not to scare them too bad, but I also try to be as open and honest about my life and condition as I can.  I don't want them to grow up, look back and get mad that I lied to them about things, or how I was.  But I also want to protect them and not scare them.  It's a serious balancing act that I am still trying to manage, refine and enact.  I hope I am doing well there.

So, right now, again, I feel like I am coasting through life.  Drifting on this strange breeze caught between life and death, just trying to stay aloft - all while still trying to live life the best I can, experience the most I can, and enjoy things the most I can.  The last five years of my life have been the hardest in particular - I have survived things I was sure would kill me. But I am still here, and I am still going. Perhaps I still have strength I do not even know about.  All I know is I am going to try my best to keep living a life of quality.  Thanks for taking the journey with me, in some way.