November 20, 2013

(Start Here) Back to complaining about how medicine is done in this country: I talk to the specialist’s assistant and she’s going to try to see what can be done to get me into an operating room as soon as possible. When I thought “I’ll go where the doctors are!” I didn’t think “I’ll go where everyone is as busy as possible!” which is why operating rooms are hard to get hold of. I know enough about these things (barely) to realize that it’s a complex undertaking – you’ve got to get all the right people, anesthesiologists, specialists, nurses, etc. – in the right place at the right time with the patient there and all the information. To me, that’s simply a matter of waiting for a call. But when she calls me and tells me they can either get me in friday or sometime in January, a bunch of stuff becomes my problem. Pre-operation I have to have blood work (make sure it clots OK and that I’m not spouting pathogens) an EKG (heart working OK and not going to cut out on the table) etc. So I need to go to a clinic and have all that done and for some reason that makes no sense, it can’t be done at Hopkins because the operating room they found is someplace else and suddenly it’s my responsibility to go get that done and then make sure the results are returned on time and FAXed to the specialist with enough time before the surgery. All the wonderfully interconnected and computerized machinery of modern medicine breaks down to: the patient is responsible for getting this critical data collected and delivered, and FAX is the preferred method. I guess FAX is the modern choice because carrier pigeons poop on things or something.* I go to patientfirst and get the blood drawn and the EKG and all that, then head home. My job is to call the specialist’s assistant and make sure all the data is there by the 21st at the latest. The 21st rolls around and the data’s not there by noon. I call patientfirst and ask them, “Oh, it’s all sitting here. We’ll FAX it right now!” It gets there, and I get the list of things I need to do for the surgery on the 22nd. Seriously, though, the medical marvels of the 21st century (OMFG! MRI! CT Scans!) are connected at the bottom-end through a system that would isn’t even clever enough to be called “Byzantine” – it’s clearly a bunch of operational kludges and territorialism with – probably – some good old-fashioned financially motivated obstruction thrown in for good measure. How can there be such stellar technology as a fucking MRI when there’s no, what might you call it, “regional hospital scheduling system”? I understand that doctors are reluctant to have someone else touch their schedules but IT people can fix that; there are techniques such as provisional requests, block locks, authority granting and revocation – it’s not rocket science! It’s not even MRI science! I consider myself incredibly fortunate that I a) Have enough money that I can take the week it’s taken to deal with this b) Have an employer that is understanding c) Am fairly compos mentis. If pain was driving me mad, or I didn’t have a decent mobile phone and internet search skills, it’d be easy to fall completely off the map. Americans, we can do better than this bullshit. While our “leaders” piss trillions of dollars into the war-machine and posture about cutting costs, and how to make sure the insurance companies can keep their profits and medicine can remain profitable, we’ve got a health system that resembles a bunch of parts from a Lamborghini stuck on the chassis of a 1989 Jeep Wrangler: it doesn’t make sense. A Lamborghini with a trailer-hitch doesn’t make sense, either, but with the Lamborghini prices that medicine commands, the system needs to be revamped from the top to the bottom – not just the part where people argue about how much regulation government gets to do.

(* How about a centralized database in which we patients can grant access to an accumulated central repository of data about us, indexed by time? And let us hold and generate our password, allow us to permit or deny groups of hospitals or doctors, specific providers or networks, and decide what documents are available to whom and when? Let us specify what’s available under an emergency override request in case we’re unconscious, and what isn’t. Give the system resonable defaults and a simple “wizard” that asks you a few questions and lets you set up an access policy. Google could build something like that in a couple months, really. Then, they could work on a combined logistical system that allowed doctors and specialists to cross-refer without a patient having to get handed a business card and be told “call these guys when they open on monday and see what they say. G’bye!”)

November 19, 2013

(Start Here)

November 18, I mostly spent sitting around in my bathrobe reading and pretending the world didn’t exist. Percocet helps with that. A bunch of boxes showed up for me – mashed potatoes, oat cakes and fruit juices from amazon.com and 2 huge freeze-boxes of ice cream. I’m not sure who sent me the ice cream. But – thank you all – my friends are so kind that you all make me want to weep. I don’t think a single person who knows me has failed to ask “what can I do?” and I’ve had to forcibly order a few of you (you know who you are!) not to get on airplanes and come thundering out to help me. I love you all. Thank you, thank you, thank you. I am asking you to stay away and doing this blog so I can keep you at arm’s length because I’m going to worry about you, too, if you get involved in this and then I’ll be playing “host” when what I really want to do is let the percocet take me to la-la land, or hide in a book and pretend for a minute that my life is normal.

My meeting with the specialist was a bunch of “hurry up, wait” but I’ve got no complaints. There are people who are vastly worse off than I am, and – seriously – they’re welcome to get in line ahead of me. Normally I’d say something flip like, “If I’m not spouting blood I don’t care” but I think the “spouting blood” concept is going on the shelf for a while.

I get checked in at the specialist’s office, which is in Hopkins Hospital’s Robert Heyssel memorial outpatient building. Dr. Heyssel lived 5 doors up from my parents when I was a kid and I remember him as a warm, friendly, bluff man who I saw once a year when our neighborhood had its annual christmas caroling walk. Now I know what he was doing with the rest of his time. The hospital has changed and grown tremendously since I worked there in 1987, but its core remains the original temple to healing – the main building, and the William Welch Medical Library (where I worked) which is a beautiful gem of a building. Places like Hopkins and the Welch are up there among humanity’s accomplishments with the great works of art and music. Like Beethoven’s 9th, which probably every adult on earth has heard (?) inventions and ideas from Hopkins have touched and bettered life for all of mankind.

I sit. Then I go in to an exam room and sit more. I have become a professional at sitting and waiting, which is OK because I have nothing else to do.

Down the hall in one of the rooms a child is screaming like a broken machine, with every inhalation the breath out is a scream. It gets on my nerves but I realize I should just be glad it’s not me, and I hope the kid’s day gets better. After a while the nurse comes in and says the doctor is running behind but they haven’t forgotten me. The child’s screams die down and after a few minutes the doctor comes in.

He’s cool. He knows what he’s doing. He’s also in a hurry. He explains to me (as he’s flying through screens on the computer to get to my CT scans) that this is probably a very typical break – there is a constant stream of bicyclists, skateboarders and rollerbladers, motorcyclists, drunks, and people who don’t wear seatbelts that present themselves with this kind of problem. He smiles and asks me whether I fit one of those categories and I say “no. I fell down.” He’s too busy to dig deeper and the CT scans come up and he – literally – glances at them. “Yes, this is typical. We’ll schedule you – talk to my assistant, call this number.” And off he goes.

I’m OK with being typical. Really. That’s just fine.

I go back to my parents’.

November 17, 2013

(Start Here)

Sunday morning I wake up and observe the leakage from my ear. It’s not as bad. I ponder the old joke, “Q: How do you know when your Harley needs oil? A: It stops leaking.” It’s going to be a long day.

Fully-developed bruise and surly expression: Fight Club!

While I was asleep I had a horrible nightmare, probably based on my experiences in the Maryland Department of Motor Vehicles back in the 80s – in which you go from one line to another only to be told you’re in the wrong line, endlessly repeated. In my dream I called the jaw specialist and when they got a look at me they said, “your skull is cracked; we can’t do anything until that’s healed.” And the neurosurgeon, of course, said, “come back when your jaw is fixed!” and gave me the phone number of a jaw surgeon and told me their office was closed until January but they’d be back January 1st and to just try not to chew until then.

After some thinking I decide I really should update my parents. Usually, in the Ranum family, nobody shares information until someone is dead. So instead of getting a call like, “your cousin is sick” it’s “the funeral is on wednesday.”  I don’t really like that tradition so I try to break it.

I explain the whole situation with the specialists and whatnot and my dad suggests that they could come and get me and that I could go to Hopkins. What a brilliant idea! Hopkins is where the doctors are! It’s in a huge city that never closes! They may have specialists that are open on sundays! (hint: nope) I double-check with Robin who also thinks it’s a good idea, then I call a limo company and book a ride to Baltimore.

My driver is pretty awesome. I explain to him that I have a broken jaw and am not feeling chatty. He asks if I’d mind if he put on some music and he puts on The Rolling Stones. The whole way. 3 hours. Actually, it’s great because I doze and dream and think about the amazing fusion of blues and rock that The Stones have accomplished, and how odd and wonderful that it came from industrial England instead of the deep south and…. Zzz….

I worked at Hopkins in the 1980s. It’s a wonderful place and the original hospital building (above) is truly beautiful. I felt like I was coming home.

I get to Hopkins, check in around 1:00pm, and wait. Immediately upon mentioning the leakage from my ear, the nurse performs a basic neurological assessment. She explains that it could be several things leaking and that it’s actually fairly normal for this kind of thing. They take a sample of the stuff coming from my ear and send it to histology to see whether it’s CSF and queue me for a more detailed CT scan, etc. I feel like things are turning around. Every single nurse from Hopkins performs a basic neurological assessment on me the first time they talk to me. This is comforting, really.

They come back and tell me that it’s just blood, not CSF, and that my skull is OK and I just have a nasty broken jaw. It’s something that happens a lot and is a well-known problem. It’s going to suck but it’s not a huge life-threatening disaster any more. Also, I can now take painkillers.

Things are turning around, mostly. I get scheduled to meet with a specialist on Tuesday. His credentials are amazing. This is going to be an assessment meeting. I go home to my parents’, eat some of Trader Joe’s awesome tomato/red pepper soup and wash down a percocet and that’s the end of my day.

A couple of thoughts: It’s clear that the nurses are the people who run the medical world and I’m actually quite glad of it. I guess it makes sense for there to be specialization of expertise in some roles and broad expertise in others. Everyone I talk to is switched-on and smart and educated and caring. The vast majority of them are women. Other than the fact that it probably points to severe gender inequality (?) at the upper end of the medical field, I find it comforting.

November 16, 2013 – Part 2

(Start Here)

The hospital in State College is nice. I get in through the ER and sit and read and wait a lot. Eventually, there are nurses and doctors asking questions. I explain I am concerned about the goo leaking from my ear. It’s slowed down now but I can feel it. I’m concerned that if it’s something leaking out of my head it means there’s a hole in my head, which means there’s a possible portal bacteria can get in, and I don’t want bacteria in my head. Historically, that has killed a lot of people and I don’t want to be one of them.

I should mention, at this point, that I stopped taking the painkillers when I noticed that my ear was still leaking. I thought I should remain clear-headed because I might have to make decisions and I can’t do that well on percocet. It turns out that this was a good idea because the oxycodone in percocet would also mask the symptoms of a brain infection: headache, stiffness, and the acetominophen in the percocet would reduce the other symptom: swelling. Saturday and sunday were both spent wandering around with a broken jaw and no painkillers.

The big question is: is this blood/juice or cerebral/spinal fluid(CSF)? Is my skull leaking or is my ear bleeding? The doctor has a clever test for this: you put a drop of the stuff on a coffee filter and if it’s CSF, which is oily, it will make a circular ring around the blood since it will perfuse more readily through the filter than the blood. Finally they collect enough, by holding me still and putting a needle down my ear-hole, and the test shows that I’m leaking CSF. I get another CT scan with more detail but they can’t tell anything about that’s going on in there from it.

Now, at this point, I expect things to be somewhat different from when I was at Clearfield: I expect to be told that a specialist will look at me on such-and-such a time and to show up wherever and we’ll fix it. But that’s not how it works. I get told: “Here’s the phone number of a specialist on the brain stuff. They’re in another hospital about 60 miles from here. Call their office on monday when they open and they’ll see what they can do. And here’s a number for a specialist for the jaw stuff. They open monday. Good luck. Bye.”

Monday? It’s saturday.

I’m starting to get a bit unhappy with how medicine is done. All this expensive gear and these huge facilities and staff and there’s no way to coordinate, so it has to be dropped on a patient who may be suffering from a brain injury? “Here, go figure it out.”? Can you imagine if the airlines worked that way? Delta flight gets delayed and you miss your connection and they tell you “whatever, call United monday when their desk is open and they’ll see if they can get you someplace.” Customers would never tolerate it. This stuff is a lot more expensive than air travel, too! How in the hell has such a knocked-together mess of crap happened? I’m guessing that the Invisible Hand of the Free Market is not very competent, really.

Another thing I am noticing is that nobody has done even basic neurological assessment on me to see if I have a concussion or worse. I am starting to get unhappy about that, though I assume the ER in Clearfield did the CT scan doing a quick search for intercranial bleeding.

Clutching my piece of paper with the specialists’ phone numbers, I leave the ER, only to discover there’s a sports event at Penn State and there are no taxis at any of the taxi services; they aren’t even answering their phones. I call the hotel, find out that they have a shuttle and 15 minutes later I’m there. 25 minutes later, a stunning blonde delivers me a bowl of tomato soup to my room; it’s the first thing I’ve eaten since friday. I weep with joy and it hurts so much I nearly pass out.

My job now appears to be to sit in the hotel room and see if I develop a fatal infection, then to call the specialists monday.

November 16, 2013 – part 1

(Start Here)

I woke up in the morning when the Percocet wore off and went to the bathroom to assess the damage.

It appeared that I had kicked my own ass pretty severely. One side of my face was hugely swollen, the opposite eye was purple with the promise of a really nice shiner, one eyebrow was swollen and my chin as well, with a nice line of stitches to highlight the damage.

More concerning was my left ear (the jaw break is on the left side) and my nose. My nose was full of blood, which it wasn’t when I went to sleep, and my ear appeared to have leaked a lot of blood during the night. By “a lot” I mean “about a cup” which, with blood, goes a long way toward making a real mess.

I panic-called my friend Robin who works at a big west-coast hospital and is studying medicine, and left a voice message that probably sounded like “pleasecallmepleasepleasemybrain is leaking out” or something like that. Then I started txting with the model to find out how the play went, and emailed the organizers of the two conferences I was supposed to be speaking at (IANS in Atlanta, and Deepsec in Vienna) and informed them that I wasn’t going to be able to come. Later, one of the doctors I talked to told me that was a really wise move because sometimes people try to travel in spite of such injuries and they are pretty much driven mad with pain when the aircraft’s cabin pressure changes during takeoff and landing.

At this point, all I had was a bottle of percocet, some applesauce, and the phone number of a face/tmj specialist in Dubois. It was saturday and in the Clearfield area everyone is closed until monday. My ear was still leaking merrily and the liquid was becoming clearer, and I was getting less happy every second.

I should mention that my friends are wonderful. As I started texting around bits about what had happened, everyone offered unstinting help, including missing work and flying halfway across the country, etc. In retrospect I probably should have taken the offer of help but I felt like the controls of my life had been ripped out of my hands, and “I’ll do this myself” seemed like part of the path of getting my hands on the wheel again.

Robin called back and we talked about the ear leak and she told me in no uncertain terms that I should hie my ass to the hospital in State College and get to the ER. It could be a symptom of a cracked skull or worse.

As it happened, the model and her husband had decided to come over to drop off some milk and cider and applesauce, and to collect her bag which had gotten overlooked in the hasty departure. We collectively hit upon the plan that while they were on the way I’d pack a bag, get a hotel reservation in State College, and they’d take me down to the ER. I guess I thought there’d be a higher chance I’d be able to get someone to look things over and get on a specialist’s schedule if I was in a larger population center.

So, I packed a pile of books, my laptop, my Warcraft controllers (priorities! I thought I might be spending a lot of time sitting in hotel rooms!) and a bathrobe, and they got me and took me to State College, to the ER.

November 15, 2013 – part 2

At Clearfield General, things were a blur. I remember flashes of getting checked in, handing around ID and insurance cards, then I was lying in an evaluation room on a gurney. Everything hurt. I was worried about her. I was worried about the weird way my jaw felt – my bite was wrong – it was probably dislocated. I appeared to be leaking blood from any part of my face that I touched.

She seemed pretty cool and collected, really. Which was great. I wonder how much my being weak forced her to be strong, and whether it could have gone the other way around if I hadn’t managed to screw up so badly? So, nurses came and went and someone came and stitched my chin together (5 stitches in one place, 2 in another) and there was various gauze and tape and a trip down the hall to a CT scan and then I started to re-organize enough that I more or less remember things clearly. The model had a leading role in a play that was being performed that night, so I was very concerned that she get stitched up and sent on her way so as not to miss that (I still wasn’t thinking clearly, huh?) which she did – apparently she did a fine job and, as they say, “the show must go on.” Good for her! Later that night she went to the hospital where she lives and they put 18 stitches in to hold her leg together.

I got discharged and called my former renter, to see if she’d be able to give me a ride to the pharmacy to fill my prescription for Percocet, then to the studio so I could lock the place up and collect my jeep and drive home. She showed up and was a tremendous help, running around CVS collecting useful things like individual applesauce servings and whatnot, while I found an ace bandage and immobilized my jaw with a sort of “ace bandage ninja” head-wrap. By this time my jaw was making horrible grinding noises and really really starting to hurt. I felt pathetic and asked her for a hug, so she hugged me and I bashed my chin on her shoulder and nearly passed out again.

I got home, took a percocet, and let my day end there.

November 15, 2013 – part 1

“I hope you’re not going to be really mad at me….” her small worried voice came from the doorway and I turned my head to pay attention. She was standing a bit funny and her voice continued “I saw that knife in the hall and it was beautiful, and I used it on my leg.” This, about the same instant my brain registered something weird on her upper thigh. It sunk in: that’s a cut.

Let me back-fill a bit …  I’m getting ahead of myself in the interest of adding dramatic tension; here’s what was happening: I was doing a photo-shoot with a model I’ve worked with several times, a beautiful young lady who I really enjoy working with. She’s a “cutter“. I don’t at all understand cutters but when I’m photographing them, I just emphasize or deemphasize it with the lights, or photoshop it out, or whatever, as I see fit based on my creative intent. It really hasn’t affected me so I have always treated it as a “lifestyle choice” even though I know that depression and self-image/self-harm are hardly a choice. I realize now that it can also become my problem.

There is a blade I was working on as part of a cooking knife set, which I had left lying on a cart in the hallway; apparently she thought it was pretty and tried it on her leg – and it was a whole lot sharper than the knives she was used to using. My mind has a permanent image of a cut that looks about 7″-8″ long with subcutaneous fat showing clear yellow on the edges where it’s pulling apart, and dark muscle underneath.

I have a first aid kit in my studio, which I immediately grab as I get her to lie on her back, and I hand her micropore tape to start taping the edges together with. I’m – well, I’m “freaking out.” She seems calm. I’m not.

See, here’s a thing: I go into shock at the sight of blood. When I was in high school, working at my friend Willy’s dad’s shop, I sliced the top off one of my knuckles on a piece of steel I was cutting. I went upstairs to ask Mrs Moore for bandages and passed out, fell straight over backwards, and gave myself a horrible concussion. The time after that when I cut myself with a samurai sword, I had the presence of mind to duct tape everything together, lie down and tape my wrist to the leg of the sink to elevate it, before I passed out. A couple years ago when I ran a high-speed drill bit up the back of my left index finger and tore it apart from nail to middle knuckle, I taped it together, lay down, passed out, came to, poured isopropyl in it to sterilize it, passed out, came to, and thought “I’m getting the hang of this.”

She worked on taping her leg together while I incoherently coached her, then I started to feel like I was going to throw up and decided I needed to leave the room – also to empty the passenger seat of my jeep – and, my memory gets muzzy from there out. It seems I got up, ran out, and face-planted on the concrete floor.

So instead of being the heroic rescuer with the first-aid kit, I was semi-conscious and she helped me to her car and drove me to Clearfield General where we both limped into the ER looking like something out of Fight Club.