The Lemonade Stand

That’s the way this week has gone, good days and not-so-good days. There haven’t been any bad days, and I’m not expecting any,  just g & nsg. The good days have been every day this week. School’s back in session and I’m feeling very much alive.

I love teaching. Watching the kids come into the classroom, doing my best to knock holes in their expectations of “just another class to be survived,” hoping to see light bulbs begin to glimmer as the little grey cells start to work…all of it feeds my soul.

Which is where the not-so-good comes into play. I’m just not feeling well, not sleeping well, not up to what I want to feel like when I’m in front of my kids. That’s part of why I’m so damned scared of dialysis. I’m trying not to let my memories of what Dad went through color my own feelings, but when I read the blogs of other PKDers it sure seems that the technology has not improved. Three days a week. Three to four hours at a time. One arm tied up with needles and tubing. How am I supposed to get anything done? And how am I going to be able to face my kids the next day, worn out from the day before? Of course, that’s assuming I can find a facility that has an opening so I *can* go at night and still keep my day job.

This is frightening. I’m not ready to retire. I’m not ready to spend my life sitting in a dialysis chair, or just marking time till the next time I have to sit in the chair. But what choices do I have?

CAPD just is not an option. We live out in the country, 20+ miles from the nearest medical facility. There are too many things that can go wrong, and let’s not even talk about trying to store all the supplies that are necessary for peritoneal dialysis.

Home Dialysis? Yeah, right. Our power goes out at the blink of an eye. Sometimes it’s just for a blink, sometimes it’s for hours on end. “Okay,” you say, “get a generator.” We have one. I can just see the power going out at 11 at night, and poor Glynn going out to fire up the generator so I can finish the dialysis session. Oh, and then there’s the water filtration system we would have to have installed. And the supplies that would have to be stored. Can’t you just see an 18-wheeler pulling up in front of our house on a monthly basis?

What about a transplant? No. Short, sweet, emphatic. No. There are too few kidneys and too many people that need them (about 75,000 currently on the kidney waiting list). There is the enormous expense. There is the ongoing battle with rejection. There are the side-effects of the anti-rejection drugs. And while I’m waiting? We’re back at square one with hemodialysis. Let’s say I *did* decide to go the transplant route. The median waitlist time at St. Luke’s is 28 months. That’s more than two years! For what? What will I be doing during that long wait? And if I reject it? Like I said, No.

All of which leaves me sitting here on Monday afternoon, waiting to see if Hurricane Gustav is going to have any affect on us (most likely not, other than some rain), watching the clock move towards Wednesday when we go to see the nephrologist again. To find out what? That the tests in July were abberations, and that my kidney function has not declined as much as he thought? That the lastest round of tests show no change, and that I’m just going to have to wait until the next blood tests, and the tests after that, and the tests after that, before we’ll know something? This tension is really getting to me.

So there it is. Good days and not-so-good days. But what a joy it is to be able to have days at all! Thank you, Lord!

This entry was posted on Monday, September 1st, 2008 at 5:16 pm and is filed under personal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.