A short while ago, I wrote about a battle with gout that had just begun. Lots of wonderful people wrote back to express concern, so I attempted to comfort them with an update that said I had found a great doctor who was putting me on a med that would bring my uric acid levels down. We would then decide whether to continue that med or not.
I never got to make that decision. It was made for me when my body had one of the most drastic and dangerous reactions a body can have to a drug.
I should be dead. And caca can still happen.
But I’m here now. And I’m going to write about the war going on in my body here, as it rages on. And the life lessons, too.
These posts will not be as polished and perfect as they should be sometimes because the meds I'm taking to combat this thing make me a little loopy. And my emotions veer wildly, too.
But…I will tell you the truth as I experience it. Because this should not have happened to me. And I hope to make sure that it never happens to anyone else, even if all I can really do is tell the story so that someone recognizes the danger signs sooner and yells a little louder than I did when they’re told it’s just a “cold.”
******
I’ll spare you the pictures but…let me give you a little description of what I looked like on that first wee hours trip to the ER. It will make what happened there even more incomprehensible.
You remember that little book about the Chinese kid who swallows up the sea and holds it in his mouth—if you’re my age you saw it on Captain Kangaroo or something. And I don't even remember why he swallows the sea.
But his face is all swollen up and his lips all pursed out and he looks like if you stuck a pin in his cheek his head would burst open like a meat balloon.
That’s what I looked like. With a big, swollen neck pouch like a bull frog, too. In fact, I sounded like a frog croaking because my glands were all swollen up and about to close.
My ears had turned to tree bark, oft slimed by a strange yellowish green substance leaking from my lumpy, ravaged lymph nodes.
I also had a really freaky, blazing red rash all over my body that scared everyone who saw it.
Except the young doctor who sent me home after what has to have been the fastest visit to the Emergency Room in recorded history. I was triaged, he felt my neck and said, “It’s a virus. It will run its course,” and sent me back home with a little paper that told me what to do for the common cold.
It also listed his name as Dr. Neil Harris. Oh yes. Minus the “Patrick” but never the less it was indeed still the name of the actor who played Doogie Howser the child doctor back when.
And I would’ve laughed but I was afraid I might code blue on the way back home, choking to death as my windpipe finally swelled shut.
But…that couldn’t happen. It was a cold. He knew it without any tests, he knew it by just feeling and not really looking at my ravaged body. I knew I wasn’t breathing right, but I left the hospital with my tail between my legs like a kid who’s been reprimanded by the principal’s office for talking back to a teacher.
I had been told I might have to go to the ER a few days before when an Urgent Care doctor looked at the beginnings of the flaming rash Doogie had seen, and ran a bunch of blood and other tests in rapid succession.
And as I related in a previous piece about this, he told me that if I was having the type of reaction he thought I was having (Stevens-Johnson syndrome or the less dire but still very serious precursor to it, DRESS) I should head for the ER at once.
"Do not wait to come here--go to the ER and have them call your primary care physician and tell him what I told you," he said.
Later, the nurse who helped check me out had me repeat those and some other instructions aloud. She especially wanted me to remember the part about not taking the drug that was apparently causing this "EVER AGAIN." The way they said and did this told me I had reason to be very concerned.
You get these symptoms when you're the 1 in 5000 to 10000 people who are allergic to this particular gout med. It causes rashes and other ugly stuff in lots of people, but only a few react as severely as I was about to.
Some will have the severe reaction suddenly after taking it successfully, symptom-free, for years. I have a feeling those are the fatalities. If it nearly killed me after only four weeks...I don't want to know what would've happened after say, four months or years.
I would later learn that it even fights the water you're told to drink and shower in trying to flush it away, making you itch and welt up as it tries to get deep down in there and do its job.
That is why it works. And also why it kills people.
I can’t understand why I didn’t go all Southside Chicago Girl on him. I think I was mostly embarrassed to be walking out of the ER only maybe 30 minutes after I got there with patients and staff looking on. But I was also too sick and scared to think straight. I had to concentrate on breathing. Yelling…maybe later.
Unfortunately, the next day, the toxins woke me up choking yet again. We headed for a different ER up our way, hoping to be taken seriously.
“Dr. Harris will be with you shortly,” the grinning young nurse informed me as I lay down on the little cot thing in one of the little cubicles in back.
“Neil Harris?” I asked.
The smile waned. I wasn’t smiling either. If looks could kill she would’ve fallen over dead on that cot with me from the one I was giving her.
“I…I don’t…really know his first name,” she said as bravely as she could. “But he’s doctor on call here today.”
I gave the Universe a wry, “You and me need to talk” smile and settled back down on the cot.
I would see Doogie again. I had no choice. But this time I took out the cards with my doctors’ names and numbers on them and insisted he speak to them, trying yet again to explain that this was NOT a cold.
He made the calls and this time had some tests run. And then put me on an antibiotic that I would learn very quickly was the one thing you DO NOT feed the syndrome I had. Because it will kill the little things you need to fight what is happening to you. And give you bigger and better infections.
But he printed out the scrip and another little handout about…I’m not sure what…and sent me home.Again, looking like a bullfrog, only this time I had a fever and my eyes were slits.
I looked so bad that the receptionist in the lobby said she hoped someone would be able to do something for me soon.
I thought, “Isn’t that…why I came here?”
Other patients looked at me askance, too. It amazed me that even people who knew nothing about medicine were obviously thinking: “This woman is allergic to something. Her throat is very big. She could choke. Maybe they should find out what is causing this before she dies and they get sued for millions of dollars by that teary eyed young daughter of hers who looks like she wants to kill someone right now.”
On my third trip in three days…I was spared Doogie. But I spent a whole day being tested for things just so that they could prove, I think, that they had done something.
None of the intravenous things they tried did a damned thing. I remained, as another truly concerned and contrite nurse noted, just as swollen around the face and neck as I had been when I came in.
Initially she’d seemed to be readying me for admission. I filled out some papers, did this odd nose swab thing and waited.
But again, instead of keeping me overnight and getting some help the next day maybe as my real physicians suggested, they sent me home with some more meds and a pat on the back.
And that’s when I realized that I really could die from this. And sent out an email S-O-S to everyone I love so that if I died they would know why.
But there’s more to it than that. This is one of those “holy shit” archetypal journeys the Universe with the wicked sense of humor sometimes asks you to take.
Actually, you’re not asked. You’re thrown in the big waves and told to deal with it. Ride ‘em or drown in ‘em, but…you’re goin’ in.
If you’re lucky, something like grace sweeps you up and sets you down in the tube…and you look down that tunnel and wink at the Universe with a cocky, “Just…gimme a minute ‘til I’ve really got this, and then we’ll get to work. I just need to get used to seeing so clearly. It’s disorienting. Bitchin’ but disorienting…”
And the Universe says, “I’ll be checkin’ in from time to time. If you really manage to survive this…we will have MUCH work to do, Grasshoppa.”
How can you tell I’ve been having wicked fever dreams?
That’s okay. I’m gonna hang ten, baby. I’m in for the ride of a lifetime and I know it.
I may thank Doogie someday if I survive.
Wait—no. That feverish I’m not.
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Comments
We're here witnessing, Keka. (just so you know, Universe!)
R.
While you are documenting all this, I hope you are lining up an attorney who specializes in malpractice suits. Once, I can maybe understand, but the second and third times are egregious.
Lezlie
What was the result of the tests that the Urgent Care doctor ran? Has Dr. Neil Harris seen the results? Did either doctor actually diagnose you with Stevens-Johnson syndrome or DRESS?
If you were actually diagnosed with Stevens-Johnson syndrome or DRESS, are systemic or topical corticosteroids being administered? Local antiseptics? If not, why?
I was never told what the ER results were. The Urgent Care results had a few "smoking guns" that seemed to confirm the DRESS concern. But at that time, the rash et al were not as extensive.
I had lots of tests the second and third time I went to the ER, but all I was told was that none of them indicated that I needed to be hospitalized. I was also told, however, that they just weren't sure what was going on, period. I'd been hoping to be admitted and have a specialist or two put on the case to get to the real diagnosis. That didn't happen.
The doctor who finally put me on prednisone said it was DRESS as soon as he saw me, but took a biopsy that will give us the definitive answer on Tuesday. At that time we'll know exactly what we're dealing with for sure, and he will adjust the meds accordingly. But he acted quickly based on his experiences with this, and because he was worried that so much time had already been lost.
Why others didn't do what he did...I cannot say. I found it odd that no one prescribed anything other than Benadryl, Tylenol and topicals, too at first. Any more than I can tell you why several things that shouldn't have been prescribed, were.
My best guess is that most of the doctors who saw me that weekend just didn't know what it was and weren't sure what to do because they were so unfamiliar with it.
If I'd been admitted and tested further, I might've been started on massive doses of prednisone quickly and a lot of damage avoided. At this time, the consensus is that as soon as the symptoms advanced that was what should have happened.
But...it didn't. So here I sit...moulting...
I don't know how many times I'd be dead by now for asking these folks questions they're not accustomed to being asked, but I ask - and ask - until I and whoever I'm with actually understand what's going on. This serves two purposes - it gets things clear and tells them that they're not dealing with someone who's going to 'take two and call in the morning'.
All of that said, I wonder myself if we're not seeing here the backlash of so many without insurance? So many now have been forced into going to the ER for things that really should be seen in a Dr's office, ranging from minor to not so much, but not ER life threatening - so that there are too many in the ER now that tend to not pay the kind of attention they should be paying? Not an excuse for the kind of idiocy you ran into, but maybe a possible reason.
The thing that really blows me away here though is that you were clearly suffering an allergic reaction to something and the bonehead sent you home?! When allergies KILL???
Ya know, you may not feel like calling in a battery of attorneys - but I'd for d*mn sure make a visit to that young man at the first clear-headed opportunity and make clear to *him* exactly what kind of risk/results he escaped by the skin of his teeth.. and I'd make sure that the hospital admin sat in on the meeting.
Do *something* when you can - not only could he have killed you, he *will* kill someone else unless he gets his sh*t together fast (let's just hope that he hasn't already).
Otherwise, man, I hope things get better for you quickly!
Rated for the razor's edge.
I can't just let it go, but I have to be very clear about my motivations. Just now, they're murky because I'm sick and angry. Once time heals...I'll get some help sorting things out.
And all my amazing friends will have already gotten my ducks in a row. All I will have to do is follow the instructions they offer.
I'm so blessed.
Re what's happening...this is nowhere near as serious as what you've been through, but all three of my sons have had erythema multiformae rash reactions to antibiotics at different times over the past twenty years. It's otherwise known as a "bulls-eye" rash--I call it the "Star Trek" rash because it makes the boys look like the victims of the salt-sucking Nancy monster. The rash makes swollen red rings on the body and is terrifically uncomfortable if allowed to ratchet into full bloom. No. 1 son had it so bad once his hair stood on end because the rings on his scalp swelled so much.
Once an ER doc took at look the latest rash-boy I'd hauled in, and pronounced: "Nobody in your family should ever take antibiotics ever again." Of course it was some guy who had no idea that our twins had gone through the mill with drum-busting green bloody goop ear infections and several surgeries as a result of those infections. Yet he felt totally comfortable making that kind of haughty blanket diagnosis.
Most of the docs we've seen have admitted they've never even personally examined a patient with e. multiformae. A shot of antihistamine at the onset (sooner the better) is the only thing that really helps, but even though we've had at least eight instances of this rash between the three boys I've only been able to get that shot for them twice. The last person they listen to, of course, is the parent or the patient. What does it take? Passing out on the goddamn floor?
Seer is spot with her advice to take a mouth next time. Oh, and although I hope you feel better, I hope you stay pissed. It scares me to death that some idiot is running around in an ER kicking people out who are as sick as you were.
Hang in there, my dear. I'll take moulting over dying any day. And PS: I have heard your wise words in my head many times this past year about how teaching is the fountain of youth. Thank you.
Since I've been taking gout medication for several years, I got rather alarmed and dug back through your previous posts to learn which drug had caused this reaction (since you didn't say in this post). Answer, allopurinol is causing DRESS syndrome.
So far, I haven't had any adverse reactions to allopurinol, but if I do, I'll be thankful that I read about DRESS syndrom here -- and that I caught Roger Ebert's post on Facebook.
George...most folks never have a problem with allopurinol. But those who do...have BIG problems. And they disguise themselves at first. So just be sure that if you start to feel as if you have a really sudden severe sort of flu--aches, chills, that general sorta cold/flu-like stuff--you consider having blood tests done. Once the rash hits...you're in for some tough times. I have never seen a more tenacious thing in my life! It has a life of its own, and every morning is a new adventure.
I would not wish this on Doogie, even...
On a lighter note, I think there were five Chinese brothers in that story, but could be wrong.
Your friends who have given advice on documentation and photos are very wise. Something tells me your own roar will return.
And to top it all, I have a gorgeous friend who used to be a kinda wild, hippie belly dancin' gal until the belly she lovingly adorned in jewels and chains and exotic fabrics decided to turn on her and begin creating cancerous "tunnels" running through her gut and erupting to the outside in awful sores that cannot be closed or healed. And do you know what that woman is doing while she sits in bed packed with gauze and doped up on all kinds of meds being used just to keep her company?
She names those tunnels! Hilarious but perfectly descriptive names, based on what they "do," how they feel, how and where they erupted or first emerged--one is the Sewer Rat, because it is particularly foul and likes to empty itself loudly in the middle of conversations and other inopportune times.
I read her emails and think what a WUSS I am. Seriously. I will walk away with some seriously messed up skin but otherwise...pretty much intact. She's arguing with a smelly Sewer Rat.
Wow.
I hope you are finally feeling better.
rated with love
...sorry to arrive so belatedly, will catch up with part two and more, soon.