Saturday, March 18, 2006

Good news, bad news.

The good news is that one of my patients whom I thought wouldn't live last weekend is now sitting up and talking. Not making a lot of sense yet, but talking. She knows she's in the hospital and she recognizes people. Two weeks ago I had her in the ICU stepdown unit; one week ago I thought we'd have an empty room when I came back this week.

The other good news is that I'm off for three days, it's pouring rain, and I have ample supplies (Belgian quadrupel ale, science magazines, Good Omens, and French bread) to last out the weekend in my pajamas.

And The Cat is seemingly content. This is *very* good news indeed, as The Cat tends to draw blood when things aren't going her way. (How did I end up with a neurologically-damaged cat? Someday I'll tell that story.)

The final good news is that my pal Heather, Wielder of Hammers, had to bow out of a retail madness get-together today. I wasn't feeling real up to retail, let alone retail in the rain, and Heather shops like the Luftwaffe blitzed London, but with a smile. So here I am, in my pajamas with my quadrupel, pondering the bad news.

The bad news is this: a patient's sister felt it necessary to come see me at work, to let me know that my patient is on life support--or was, since she's probably dead by now--at a different hospital, fifty miles away.

You try really hard in this business not to like people. I mean, you *like* people, otherwise you wouldn't be a nurse. What you try to keep from doing is realizing that a particular patient would've made a really, really good friend had you two not met when she was diagnosed with a rare and aggressive degenerative neuromuscular disease.

You try really hard not to like people that you know you're going to lose soon.

Devic's Syndrome is often referred to as a type of multiple sclerosis, but it's really not. It's much more systematic than MS, and in its way is crueler. First it takes your eyes--the primary symptom of Devic's is a preference for the optical nerve--then it takes your legs, then your bowel and bladder control, and finally your ability to breathe.

All of this happens quickly and without the changes in mentation or personality that happen sometimes with MS.

There isn't really any effective treatment. You can start the person on chemo, and they'll lose their hair (a long-standing joke was that her hair was longer than mine before mine started to grow out), or you can put them on various pheresis therapies that might make them feel better for a time (another long-standing joke was that I used the same vein over and over, in an attempt to carve my initials into it), but really...nothing much will make a difference.

And so, blind and bedbound, with the same interests and intelligence and humor that she had before she got sick, my patient told me that I'd better shape up--or else she'd come kick my butt when she could walk again.

I think both of us knew at that point that she wasn't going to get to kick my butt. Neither of us wanted to admit it.

I had to pass the news on to other people who'd worked with her. That's not fun, either.

"Somewhere, somehow, I know she's going to be healed" said her sister.

I know she will be, too. But what happens to the almost-friends she leaves behind?


Anonymous said...

I'm really sorry.

I'm really, really sorry.

Anonymous said...

I actually said just last week that this job would be a lot easier if I could stop falling in love with the little old ladies I take care of...

Jill said...

Devics sounds a lot like what my friend with MS has; it has badly affected her eyes. It wouldn't surprise me if that is her true diagnosis but is lying to me about it. :-( Does it progress faster than MS? I know she has some bladder control issues but she walks a lot. Hmm.

Anonymous said...

My partner was dx'd with Devic's in March of 05. I took him to the ER with flu like symptoms.They said menangitis and admitted him. 5 days later he was blind in both eyes. 3 days later paralyzed from the neck down. Steroids did not work, plasma exchange did not work. Its May of 06 and he is sitting in a chair watching "The Golden Girls" on TV. He can't see color yet, but he can walk unaided for almost 1/4 of a mile. So there is hope. The Doctor told me, at one time, that he would not make it a month. Then it was he will never walk again, then he will be blind. WRONG! I geuss that's why its still called the "Practice" of medicine. Its nice to hear how kind you were to your patient though. I can't tell you how horrible some of the nurses and doctors were to us. I have even started a Devic's online support group and would love for you to check it out.
We have over 50 members from different countries.

Anonymous said...

hi there i am gayle and i run the worldwide devic's support website we work in conjunction with the walton centre for neurological research, and have just applied to become a charity the first ever for devic's/neuromyelitis optica, we have forums, penpals and all the latest info on research and news about nmo/devic's, we have support networks in the uk, australia, the netherlands and are currently setting one up in the usa, we also have the first ever survey of people affected by this condition and have collected over 150 names so far , we are just about to launch the first ever worldwide devic's chatroom and fighting this condition and offering support for patients, their carers and families is our life. you can find us at