“You’re on the road to hospitalization.”
That’s what my shrink said, and he never does, speak, that is.
I was wondering how I was gonna make it another week to the Rituxan infusion. I’d already canceled my trip to Colorado. I was supposedly on the road to improvement, so why did my body feel so bad?
I grew up in a house where it was illegal to be ill. If you said you felt bad my mother insisted you go to school to get better. Doctors were for other people, with real problems.
Suddenly I had a real problem.
My shrink asked to see my back.
Then he called the dermatologist and the internist on my dime. Saying I needed to go to the hospital right away. But they were wary. Because when you go to the institution there are high odds of infection, and with pemphigus, infection kills. Used to be eighty five percent. Now it’s somewhere between three and fifteen. But the bottom line is if you get one, good luck!
So I’m driving home after my shrink appointment facing the very real possibility, this could be the end. And how does it end anyway? Maybe you get cornered, by maladies that don’t seem so bad and then intersect and no one lives forever and certainly not me, not you either.
So the following morning the dermatologist squeezes me in. I lift my shirt and she is stunned, she says I immediately have to go to the hospital. But there’s a problem, UCLA is closed because of the fires and Cedars-Sinai has no rooms. But it gets worse than that, since Puerto Rico is down and out there are not enough IVs, so even if I check in…
But we devise a plan. I should see the wound doctor first, as scheduled, and then go to the ER at Cedars and wait for a room to open up.
The wound doctor wouldn’t touch me. Said in the hospital they’d just rip off his work. So we went to the ER and waited and waited and…
If I’d known it was gonna be four hours I would have pulled rank. Yup, it’s all about who you know, but I wasn’t in the mood to make contact with the outside world and I figured it would never take that long but the real problem is when I finally got to the room it was after six and therefore it was…
You don’t want to be in the hospital on the weekend. It’s a holding tank, nothing happens until Monday. And since I’d waited so long in the ER I was going to go untreated, but I didn’t know that yet.
So they want to give me pain pills. Which I don’t want to take, because I want to be fully aware. But they convince me otherwise, I get an IV drip of steroids, and in the elevator up to my room I see a sticker on the door, saying there’ve been no hospital incited infections in three years, and this makes me feel better, until I wake up Saturday and feel worse.
Meanwhile, the hospital is an alternative universe. Where celebrity and fame are irrelevant, all the totem pole markers of the regular world. You’re a patient and they’ve dedicated their lives to saving you, D.C. be damned.
Now the truth is they started the IVIG at 11 pm. It takes four to five hours. Illustrating they do work on the weekends. But as for my wounds…
They weren’t gonna touch ’em.
I’m stuck to the plasticized bedding they’ve laid down for my leaking. I can’t move without excruciating jolts of pain. I’m stuck in the bed, barely able to reach the button for the nurse, movement was almost completely out of the equation.
And the hospital is organized and disorganized. And you worry about alienating the infrastructure. But I said thanks and made conversation and they never burned out on me.
But I could not get wound care.
The hospitalist, an internist who only works in the edifice, told me nothing could be done, she’d put in a request, but the odds were low.
So I text my dermatologist. Isn’t this why I’m here, for wound care?
And no one shows up and I’m getting deeper and darker into my mood and at 9:20 PM, that’s right, a plastic surgeon comes in, wraps me up like the Mummy and disappears, after I take a shower that has me screaming at the top of my lungs, after he put this yellow tape infused with Vaseline all over my body, I finally felt good, but he said I’d be there a week.
But two days later my dermatologist showed up and said I could go if the plastic surgeon said so and he showed and I got wrapped again and exited.
You don’t want to be in the hospital, they don’t want you in the hospital, but do you feel safe enough at home?
So I got three infusions of IVIG and steroids inside. Ultimately, they speak to the symptoms, they kick out the bad guys to give you temporary relief. The plastic surgeon said my skin was twenty percent better in two days, but it had been totally gone before, the entire top layer. The only good thing is pemphigus foliaceous only affects the top layer, otherwise I would have been checked into the burn ward.
And the following day, Tuesday, after three days in the hospital, I went back to the plastic surgeon, who re-dressed me.
On Wednesday I went back to Wilshire and Doheny for my second Rituxan infusion. Which could be accelerated since it went smoothly the first time through, it took just shy of five hours instead of more than six.
And I was wearing mesh underwear and still had leaking sores on my legs and butt, but on Thursday night I got the dreaded blisters again.
So I’m starting to peak and freak, this has gone in the wrong direction from day one, but I’m seeing the dermatologist the next day…
Who gives me a positive report. She doesn’t think I need another IVIG this week. I should recover, or not. You see not enough people get pemphigus, there’s not enough data, usually after two infusions of Rituxan most people get better in eight weeks. But since I had the IVIG and steroids, maybe it’ll be three to six weeks. But I might have flare-ups. Anything could happen!
But I started to feel better. Sunday I could walk around like normal. I was slowly beginning to feel optimistic.
And then today I woke up with blisters all over my body.
Will they dry out and fade, like the ones from Thursday? Or burst and hurt, as some did last night. Am I climbing up or slipping down? I DON’T KNOW!
So let’s start at the beginning. I have pemphigus foliaceous. Which thank god is not pemphigus vulgaris, which starts in your mouth and genitalia, you cannot eat, but both are pretty damn bad and rare.
It went untreated for a year and a half.
They don’t know exactly what caused it. But the underlying conditions can be triggered by surgery, which I had, on my shoulder, eighteen months ago.
But it could be a drug reaction, to the Gleevec I take for my CML leukemia. But I stopped that for thirty days and got no better.
But did I get so much worse because I went back on the Gleevec or was the disease just taking its own course?
The hematologist believes the Gleevec is a red herring, but for now I’m not taking it, even though it keeps me alive.
Sometimes immunological diseases, of which pemphigus is one, burn out…IN FIVE YEARS!
Some people have two Rituxan infusions and are cured.
Others need another in six months.
Others need one every six months in perpetuity.
So now you know as much as I do, which ain’t a whole hell of a lot.
So right now I’m functional, can eat and drive, even though I’m itching and scratching. Will this maintain? Your notion is as good as mine.
And to tell you the truth…
I had this all planned out when I was going through last Friday’s shenanigans, entering the hospital, I was gonna write something great.
But I crashed the following day when wound care didn’t show up and still haven’t recovered.
I was waiting to write until I was cured!
But that point has not arrived.
But I’m writing this, so how bad can I be?
I’VE GOT BLISTERS ON MY FINGERS!
(Well, on my hands and forearms and thighs.)