June 17, 2013

diary of a drowning defeated

6/16/13

Those of you aching for more blogs about politics, food, morons and piss-n-vinegar rants will have to wait, because my recuperation period has taken up most of my mindspace. Thank goodness someone else is writing the blog today, the estimable Dr. Caitlin Reed, who along with Drs. Morton, Sooferian, Goldman and Kuhn, helped me survive through the week.

I've known Caitlin for 22 years. All I have to say is this: you know that shy girl with glasses at the party in 1991? You better be a good guy, because she will grow up to save your life.

Here's her take on my illness, in bullet form, written as a doctor. I'm so glad to have this because, in some way, it might make sense of the madness:

***
Thursday May 30 - Saturday June 1. From Ian: "Tightness in chest that doesn't feel right. Three days of fever that is unaffected by medication. Early Sunday morning I know it's time for the emergency room."

Sunday, June 2. Voicemail from Tessa that Ian's getting admitted to the hospital overnight for pneumonia and a headache. Sounds like just a precaution. I'll check in tomorrow.

Monday, June 3. Talk with Tessa. Ian's had five days of fever, mild cough, bad headache. Had a tough night, fevers, someone down the hall in the hospital is screaming all night. An infectious disease doc is being called. Email from Ian: this is your wheelhouse, isn't it? Yes. I stop by that evening. To my surprise, Ian is on oxygen, just a small amount, but even this is unusual for pneumonia in an otherwise healthy person his age. He looks pale. He's warm. His fever spikes while I'm there, and he has shaking chills.

Doctors divide the world into two categories: sick and not sick. We spend years of residency learning this, developing a spidey sense so we can know at a glance which patients we should be worried about. Ian fails the eyeball test. He's sick.

Tuesday, June 4. Ian suddenly needs way more oxygen. Tessa calls. They are putting him on a face mask. Getting a blood gas. Doing a stat CT scan of his chest to rule out a blood clot in his lung. Moving him to a step down unit for closer monitoring. Good, that's what should happen.

This time I bring a stethoscope and take a listen. Wet crackles to halfway up the left lung. Not the whoosh of moving air that I should hear. This is not going the right direction. I check the antibiotics: they've been changed, appropriately. They are covering a host of possibilities I'm starting to sort through in my mind, in the habitual way that something deeply learned cannot be unlearned.

AntibioticsHosp(bl).jpg

Banter with the nurses about their shift, my hospital. I want them to know that I'm keeping an eye on him. Ian's no longer amused. The hospital has stopped being sort of interesting, potential material for the future, a new and different experience. Now it's frustrating and scary: he is here, he is doing everything he is supposed to do, and he is getting worse.

He shows me a luminous self-portrait of Lucy. I'm glad it's there in his room. I want the hospital staff to know: he's a father. A husband. A writer. Beloved by an insanely wide circle of friends. Because they will treat everyone professionally, but if they care about him, they will do their damndest.

Wednesday, June 5. He needs more and more oxygen. A non-rebreather mask gives him 100% oxygen with every breath. This is the most he can get without assistance from a machine. The mask covers most of his face and has a vaguely Darth Vader quality. I am aware that often this is a brief stop on the way to the ICU and a ventilator.

OxygenTubesHosp(bl).jpg

His antibiotics have been changed again, they're throwing the kitchen sink at him now. On an X ray, air is black and fluid is white. Ian's X ray shows that his left lung is almost entirely white. His lung sounds underwater and now the base of his right lung sounds similar. He sounds like he is drowning from the inside.

Sitting on the edge of his bed, I promise two things. I'm going to make sure they take really good care of him. And he will not be alone. I don't promise that he's going to be OK, because I have learned through hard experience not to do this. I make sure there's a central line in place in case they need it later in the ICU. Anticipating.

Ian's breathing is tenuous. He can't talk. He looks terrified. He wants something for anxiety, for pain. But it isn't safe. He needs his respiratory drive and medications could interfere with it. I can see that this explanation isn't satisfying. He's glaring at me as if to say, "I'm not going to fucking forget to breathe, that's the only thing I am doing right now." I say that his doctors are more worried about his breathing than his pain.

IanBraceletHosp(bl).jpg

He's conscious but seems far away, deep inside himself. We talk about meditating. He nods, he can do that. Has done that. Will do that. I feel faintly ridiculous because so much of meditation is about breathing and that is the central fact of his life right now.

Thursday, June 6. The ID (infectious disease) doc and I talk. It might be awkward- I'm just a friend, not officially taking care of Ian, but a colleague too, and I'd like to know what she's thinking and what the tests have shown. No problem. She briefly summarizes his case, and I'm impressed: she has ordered almost every test that I would have, considered the possibilities, remembers even the minor things, like the tomatoes Ian planted in his garden the week before this happened.

Labs are remarkable for a very low white blood cell count; could this be viral? Or early septic shock? We mull this over. ID doctors don't do procedures, but we pride ourselves on taking good histories and considering all the subtle clues. She marshals the evidence for and against various possibilities: could this be a fungal pneumonia like cocci, and that's why he isn't getting better on antibiotics? He did go to Santa Cruz, but he didn't drive through the Central Valley, the hotbed for this disease in California. What about Legionnaires' disease - he's traveled, there's a hot tub on the farm, though he doesn't smoke so it's less likely.

We've both seen very severe atypical pneumonia from legionella, but the test is negative. The respiratory viral panel is negative. The sputum culture is negative. The blood cultures are negative. Everything's negative. But he's very sick. It might be a viral infection run amok in his lungs, or a "walking pneumonia" that is unusually severe like mycoplasma, even though the blood test is negative, or maybe it's an aspiration pneumonia somehow related to a bout of acid reflux the week before.

"What about the zebras?" I cite the aphorism drummed into us during training: "When you hear hoofbeats, think horses, not zebras." Meaning that common things are common, and exotic diagnoses rare. But we've thought about all the horses, and still have no definitive diagnosis. And Ian's condition is deteriorating. Could we be missing a rare diagnosis, something unusual - Q fever? Unlikely, his farm is not the kind with birthing cows in the barn. Brucellosis? I doubt that he eats unpasteurized cheese from Mexico. Psittacosis? No bird exposures and the lack of hepatitis and or an enlarged spleen argue against this. Hantavirus? He did have exposure to mice when cleaning his garage, but his respiratory failure isn't fulminant enough, and the x ray findings would be unusual. Novel coronavirus? There have been a few cases in Italy, not just the Middle East, but the incubation period isn't right for his last exposure.

What about those weird insect-borne diseases, anaplasmosis or human monocytic ehrlichiosis from ticks in New York, or murine typhus here in LA? He doesn't have a rash, or some other findings we'd expect, but she'll add another antibiotic just in case. I hang up, reassured. She's good, she's thorough, she's compulsive, the word of choice to praise an ID doc.

Ian's about the same. As sick as a person can be without needing a ventilator. He can't keep going like this for much longer. He is lethargic. It could be because his carbon dioxide level is rising, a sign that he can't keep up. The only positive: most of the time, when things go south, they do so quickly. I'm cautiously encouraged that he is still breathing on his own and has not had a fever for two days. Somehow he is not yet in severe distress, not gasping, still calm. Maybe the antibiotics are working.

Tessa's phone is pinging every couple of seconds with texts, emails, voicemails. The scattered tribe wants to help, needs to know what's going on. She is coordinating care, anticipating a prolonged recovery, looking into rescheduling plans, figuring out how to be there for Lucy's year-end concerts and recitals, importing help from family, keeping up with different medical specialists, bringing in treats for the night shift, mastering the hospital hierarchy, staying on top of a million details. She is formidable. And scared.

Friday, June 7. X-ray a little better. Ian feels miserable and is complaining. We are thrilled. His head is pounding, he's sore all over, he's too weak to sit up. The flamboyant respiratory therapist that night tells him: you just think you need more oxygen, honey. You want to feel the air flow. And he's right. They get him down to a simple mask.

Ian is unhappy with the position of a small fan blowing on him. Tessa and I take turns relocating it. Head of bed. Side of bed. End of bed. Different angles. Nothing feels right. But at least he's talking a little. Voice weak. But talking. Privately, I think of talking as the Ian vital sign. He is not out of the woods. He still needs high amounts of oxygen. But I think he's starting to get a bit better.

We might never get a diagnosis. All the tests are still negative. Maybe we'll figure it out by measuring his antibody levels a month after he's recovered. In a way it doesn't matter: he's surviving a life-threatening illness. He's getting better. We're going to see him through.

Saturday, June 8 - Monday, June 10. Over the next few days: dramatic, steady improvement. His eyes look brighter. There's color in his face. Salem arrives, bearing cans of Ensure Plus, vetted for lactose intolerance. He charms the nurses, holds down the fort, runs out for soup, amuses and cajoles Ian into sitting up in a chair. Tessa and the physical therapist get him out of bed for a short, agonizing, but important walk.

I'm anticipating: can we wean down the oxygen some more, get him up into a chair for longer, get that PICC line out so it doesn't get infected? There are details to attend to. Ian is exhausted to the very marrow of his bones. But he is through the worst.

Tuesday, June 11 - Thursday, June 13. Unbelievably, he and Salem have hacked the hospital TV to stream Apple TV movies, and he's already planning an excellent hare-brained scheme for the Jartacular in three weeks.

I get a copy of the CT scan and take a look with a colleague I trust. We marvel at how fast Ian has recovered, faster than we'd expect. The CT contains thousands of 2D slices, millimeters apart, through his heart and lungs. Through vast powers of image crunching, the computer has made a 3D reconstruction of Ian's heart and great vessels: the aorta, the pulmonary arteries.

I can rotate his heart in virtual space with the click of a mouse, almost hold it in my hand. Through this whole illness, Ian's heart has pumped with the steady lub-dup of life, beat after beat, a vital metronome, reassuring and constant. We can see his heart from every angle, a miracle of science, but who can know the ineffable mysteries of love?

Friday, June 14. Ian leaves the hospital in time to see his daughter Lucy graduate from 2nd grade.

LucyPortraitHosp(bl).jpg

 

Posted by Ian Williams at June 17, 2013 1:13 AM
Comments
Posted by: killian at June 17, 2013 4:13 AM

Thank you for this, and for all you did to help The Williams Family. Bless you! <3

Posted by: Peter Rukavina at June 17, 2013 4:50 AM

So now that you've told us to fear the mushrooms and the ticks and the country of Italy and parts of California, I am wondering what advice you (the doctor, not the Ian) have for we civilian mushroom-eating woods-walking Italianophiles: beyond religious hand washing, are we otherwise at the mercy of the elements when it comes to projecting ourselves from, well, everything?

Posted by: Heather at June 17, 2013 6:01 AM

Caitlin...will you be my doctor? Im in Texas, but just in case. :) That heart video is cool.

Posted by: dct at June 17, 2013 6:44 AM

Thanks for the rundown, Caitlin!
dct

Posted by: mom at June 17, 2013 7:49 AM

Caitlin: Thank you, thank you, thank you...

Posted by: CM at June 17, 2013 8:26 AM

That's terrific!
One thing I would say as a laywoman - seems like it DOES matter if there's a way to find out what caused it. If Ian is vulnerable to something - something on the farm, something when traveling, something he eats - maybe if there's a way to know what it does to him, or someone else in his situation, it'd be good to find out.

Posted by: Doug Ferguson at June 17, 2013 11:17 AM

Beautifully written, and I was thrilled with the outcome. What a mystery, though. Ian still has to be worried about the cause and whether there will be a recurrence. Here's hoping and praying that whatever this was is now fully in the rearview mirror and won't be paying another visit again!

Posted by: wanderingsue at June 17, 2013 12:20 PM

Caitlin Reed, you are awesome. As ever, I am in awe. Love you.

Posted by: Oliver at June 17, 2013 6:50 PM

Wow. Thanks, Ian, for allowing the dramatic details to be made public, and to Dr Caitlin for relating them...not to mention looking after Ian. Scary!

Posted by: Caroline at June 17, 2013 7:53 PM

I second Oliver's comment. Umm, and where was this little number picked up??

Posted by: Salem at June 17, 2013 8:01 PM

Caitlin! What a gift to Tessa and Ian. Constructing any confidence or vision of what might come next, was so much easier when the words came from you.

Posted by: Caitlin at June 17, 2013 10:29 PM

Thanks for all the kind words! Ian did the healing, his doctors took good care of him, and Tessa is a wonder. It was my privilege to help.

To answer a few questions above: Peter, no need to quit going for walks, stop eating mushrooms (and also, cocci aka Valley Fever is a fungal infection, but you don't get it from eating mushrooms -- it comes from inhaling spores found in dirt, at construction sites and other places), avoid all outdoor activities, and eschew trips to California and Italy.

I am a firm believer that exposing your immune system to various places is a good thing overall. It's more the inverse: when someone gets sick, and is getting worse, and we can't figure out what's wrong, then we cast a wider net. We start to closely examine all of their activities and exposures (work? pets? anyone sick at home? travel? insect bites? and more) to see if any of them give a clue about a more unusual cause of illness. Often we can't find one, but it's our job to look.

CM, agreed, it would be great to be able to name the cause. There are some blood tests that could be run a month or two after the illness that might help retrospectively make a diagnosis, by looking for an increase in antibody levels to various pathogens. There are also some other tests that could be helpful in excluding other diagnoses, and Ian and I have talked about these. Based on the CT scan findings, this was almost certainly an infection, not an exposure to a toxin or an allergic reaction to a food. It's also highly unlikely to be something found on the farm or in Ian's daily life, because this has never happened before.

Unfortunately, there is a great deal of uncertainty in medicine, and it's as common not to be able to make a diagnosis as it is to nail it down. But we'll keep trying!


Posted by: Anne at June 19, 2013 5:22 AM

My favorite line in this incredible post is this one:

"Unbelievably, he and Salem have hacked the hospital TV to stream Apple TV movies..."

Somehow, that sums up the Spirit of Ian Resurgent to me. Apple Movies, not humdrum cable TV! Creative hacking, not passive acceptance! Teamwork! Friends!

Bless all of you. Truly, bless you one and all.

Posted by: Summer at June 27, 2013 2:22 PM

Wow. I'm on the West Coast and just getting the news on all this. Caitlin, thank you for helping save my friend and our favorite writer. Thank you to Tessa and Lucy too, and all the other doctors. Ian I'm glad you're here!! *phew*

Awkward question: Has anyone considered the heroic volunteer work Ian and Tessa did after the Twin Towers came down? I heard the 9/11 dust has had a deleterious effect on some people's lungs, to put it mildly. Just wondering about a possible zebra amongst all the horses. At any rate, I'll be saying prayers of gratitude for the rest of the day.

Thank you Caitlin, and Liam, feel better. Much love from California. XOXOXO

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