updates from the trooper

So in June I went to Florida for a short trip on a random Friday through the following Tuesday. During this trip I should have scheduled a dialysis treatment for Monday... but being the stubborn person I am I decided to skip the Monday treatment and just wait until Wednesday. I never felt worse for skipping that treatment and since starting dialysis that was the longest I had ever gone without a treatment. I had always suspected that while the standard dialysis schedule includes three visits per week that I could probably get by fine on only two visits per week. Upon return from my trip I asked my nephrologist to allow me to run a trial of only two visits per week and she reluctantly agreed to let me.

I've since run on two visits per week for several weeks. Every month I have blood drawn and a report card based on that blood work to let me know how my health is. My first report has been for all intents and purposes exactly the same as it has been over the past year. So I now have the blessing of my nephrologist to continue with the twice a week visits.

While I've only gained back one day without dialysis its amazing how much better I feel all around for the change. I generally feel a little crappy about two hours after a treatment and I always find it harder to get out of bed on the mornings following a treatment... but now having removed a night of feeling crappy and a morning of the struggle to get out of bed I've given myself a little bit of my life back... and that in itself feeds my appreciation of the good life that I have.

I also have to mention that I've pondered the possibility of NOT getting a kidney transplant. I haven't spoken about this to anyone until just this week. There's a social worker at the dialysis center and once every few months she along with the various members of the staff are required to sit with me to discuss my health from every aspect. It was supposed to happen this week but due to someone forgetting to tell my nephrologist it didn't happen, but my social worker was there and decided to chat with me anyway. While we were talking I had for the first time revealed this thought of not getting a transplant.

You've heard it said that sometimes you need to be thankful for the things you didn't get. When this all started I only wanted to avoid dialysis and to receive a donor kidney as soon as possible. Upon starting dialysis I had hoped that a donor would be found before I had a chance to come off the catheter and start using the fistula. Alas very few donors actually made it far enough to even seriously be considered and the ones that were, were all ultimately eliminated for various reasons.

Initially this was a somewhat depressing reality... not that I'm one to ever really get down and feel woeful for my situation, still when you have a goal and fail to realize that goal it can get you down a bit. But I'm a trooper, right? "I never complain" as my wife will often say. Complain about what I think to myself... that I'm lucky enough to have a disease that won't kill me quickly or painfully... that I'm lucky enough to live in a time when I can simply receive dialysis treatments to keep myself alive considerably longer than I would have had their been no such thing? Should I complain that I'm one of the healthiest people on dialysis... so healthy in fact that I can get away with two visits per week instead of three. Should I complain about the procedures that have installed the catheter and the one that set up my fistula? I know a gal who had real problems with her fistula and had a catheter much longer than I did... I have nothing to complain about (Reezie you're the trooper... hang in there my friend).

But here I am a little over a year after starting dialysis, I feel healthy... all things considered, and I don't feel as though I really have any restrictions on life so long as I keep up my treatments, which of course I will do because if I don't I'll have about three weeks to live. So do I have anything to complain about? Yes!

I can complain about the fact that getting a transplant is going to disrupt my life. First there's just the recovery... about 6-8 weeks. Then there's the countless meds I'll be on... most of which will be the wrong med or the wrong dosage at first and only trial and error will resolve the issues along with a few potential hospitalizations as we deal with the process of figuring out the right med treatment for my personal situation. Ultimately I'll wean off of certain meds and find a regular regimen of prescriptions to keep me alive and to prevent my body from rejecting the transplanted kidney. But these will also leave me in a constant state of immunodeficiency not to mention that my diet will have restrictions including not eating sushi, which just happens to be my favorite food to eat.

So... do I really want a transplant? Yes... but I'm in no rush to get one because my life is pretty good right now without all of that trouble. And while dialysis itself is only good for so long and will have its own effect on my body... I am somewhat thankful that being on the donor list means I'll probably get three to five more years of this version of life before I have to give it all up for the one described above.

My name is Bil... and I have kidney disease