I saw my nephrologist today, and we decided I’d hold off on dialysis a bit longer. For the benefit of anyone reading this who’s here mostly because of my occasional PKD/kidney disease/dialysis post, my creatinine today was 6.8, which is the “best” it’s been in 3 months. It’s generally been between 7.0 and 7.5 over the past 15 months, since the February 2008 kidney stone. (This translates to roughly 10% kidney function, which means Stage 5 End Stage Renal Disease and time to consider dialysis and transplant).
The intracystic hemorrhaging continues, and it’s got my hematocrit down to 31%, which is contributing to my general feeling of fatigue.
So despite trying to be open to the message that dialysis doesn’t need to be so awesome, and that live can be lived, it’s still not an undertaking to begin unless it’s really a necessity. I don’t know exactly when I cross that line when it will be necessity, but I’m apparently not there yet.
Unfortunately, it feels like life is pretty much work->eat->nap->TV/internet->sleep->wake->work, and I would like to try to extract some more meaning from the day. Working on it. Always working on it, believe it or not. I know I’m always talking like I’m giving it up. That’s part of what’s so frustrating; I’m expending at least a great deal of mental energy trying to pick myself up, and it’s exhausting and deflating when efforts continually leave me spinning my wheels.
Let me end on an unrelated note. Presenting Herman from a couple of nights ago. He was happy for some reason. Maybe he was just enoying Spaceballs, which was playing on TV.
bullcitydave 
Dear Toastie,
My son is 25 years old and just re-started on dialysis 10 months ago. Reading through many of your posts, I can see where he often feels the same as you do about life, kidney failure and dialysis.
I don’t have words of wisdom and I understand that families aren’t always very helpful because they really don’t understand. What I want to say is I hope you don’t stop writing your posts because reading about your real thoughts and experiences helps others like my son (and me) who have the same or similar experiences with doctors and healthcare etc not feel like we are the only people with these same issues.
Very few sites express what is really happening with renal patients and it clearly isn’t just another chapter or a new challenge in life. It takes over your life and it is all you have time or energy to do…with little in the way of guidance about how to maneuver through kidney failure.
I will continue to read your posts. We do care how you are doing and have great empathy for your situation as we are right there also.
Take care!!
Zoe and Alex
Zoe and Alex – Thank you for the kind comments. I wish that you did not have to deal with what you’re going through, but I am heartened that my writing can be of some value. I also appreciate that you’re not judging me for what I know is the not always the healthiest attitude regarding my circumstances. As with many difficult situations in life, we know there are no magic answers that anyone can give us, but knowing that someone is listening and offering empathy is a great comfort.