Jules will need a transplant at some point. Sooner than later, probably. One of the unfortunate criterias for getting a liver is demonstrating a real need for one. This means your liver just gets worse and worse, until it is about to fail, and then you hope, by some kind of magic, one shows up and you can get it in time. As one of Jules' doctors put it, you start limping along, more and more, until you can't limp anymore...

And the limping sucks. Not fun stuff to deal with, but, by a lot of standards (and Jules' own feelings echo this), it is tolerable. Jules has said, "there are people worse off...". She is very strong-willed and compassionate, to be sure.

One thing to note, however, is that the problem is really in her immune system -- it is attacking her liver. There is no guarantee that a new liver won't get attacked just the same. Doctors say there is a "good chance" a new liver will be fine. I think one told us 6-10% start the process all over again. But, another doctor told us that it is likely it will start over again! I think the bottom line is, not many studies at all have been done on this, and it is very hard to say what will happen with a new liver. But, it will be needed.

How about treatment in the meantime? Well, one thing to do if your immune system is being naughty and attacking your liver, is to suppress it. This has the immediate and obvious side-effect of making you have a weak immune system! But, it slows the attack on the liver.

Jules takes a couple different pills to do just this. Naturally, she gets sick more often (colds, flu, etc.) and stays sick for longer. These drugs are also very powerful hormones, which come with all sorts of side-effects, such as making Jules diabetic.

We, our family, had no idea just how much the liver has to do with what goes on in your body. A lot of it, doctors aren't really sure how it ties in, but just know it has something to do with certain things. Like, did you know that the liver has something to do with protein digestion, arthritis, and blood clotting? Well, we do! Jules has problems with arthritis and is often sore. Her blood takes several times longer to clot than normal. Proteins don't digest properly, and she has lost some muscle mass. And, quite often she is a nice shade of yellow!

There is no point in going on about depressing day-to-day details. I just wanted to illustrate that things, even when "good" and "normal" for Jules, can be a bit of a drag. Powerful pills with nasty side-effects, and a big collection of weird stuff going wrong. But, Jules is very strong, and full of good-spirits. To look at her, and listen to her, you would hardly know there were so many things going on. She has a wonderful and slightly twisted sense of humor. I remember talking to her about something off-subject one day after one of her many, many doctor visits, and Jules just interjecting, "Oh yeah, I am diabetic now." She does an amazing job of taking things in stride.

And then, like just happened very recently (and inspired me to make these pages), bad things can happen and stuff can go really wrong.

See "Current News" for more on this.