Physicians are the worst Patients

Sometimes life throws you curves. Sometimes it throws blood clots into your brain.

For the entire month of April while I was on my inpatient medicine rotation I kept having increasingly worse headaches. I never get headaches. I thought it was the stress, the work, dehydration, TMJ, tension, migraine...but it was none of those. Ibuprofen took away the pain for a while but it came back, usually worse than before. My last call of that month I couldn't even drag myself out of my call room to see my new admit. I lay there with the lights off holding my head. Sometimes if I were very very still it would stop hurting for a minute or two.

I called my resident who told me to go to the ED for a shot of phenergan and toradol (because that pain killer wouldn't make me sleepy so I could still get back to work). I mustered energy to stagger downstairs but they were going to make me wait so I tried some water and ibuprofen I had with me. I didn't even make it out of the cafeteria, I made it to a corner, shoved the lid off the garbage can and threw up over and over in the recepticle. It was the salad I'd had for lunch.

Called my resident again and she told me to go home. I threw up while I was driving most of the way home. Into a styrofoam cup I had in the car. I pulled over when I couldn't see anymore and needed to empty the cup. I made it to the urgent care near my home though. They gave me phenergan and demoral shots in the butt and left me in the dark room until they closed. It hadn't helped, but they sent me home in a cab anyway.

I woke up every hour or two that entire night, retching into a chocolate honeycomb bag I'd urgently emptied when the first wave came over me. I was hot then cold. In the morning I saw it was all green bile. I tried to shower but ended up only being able to sit in the tub and let the water pour down on me. My boyfriend showed up. I still couldn't keep anything down, and the headache was worse every time I moved anything. We went back to Urgent Care and spent the next five hours there in another dark room. This time I got compazine, iv fluids, imitrex, and finally the toradol touched the pain. Five shots in the butt later.

We also corralated the start of the headaches to when I'd first started using the nuva ring. So he urged me to take that out while I was there. Anything to make it go away.

They gave me some toradol that I could take by mouth only for the next five days. Plus some compazine suppositories to help with the nausea. Lovely fun those.

Still no reason why I had the headaches, though. Eating a little better over the next day, but only a little.

I was again on call that Friday, April 27th on a new rotation at a new hospital where I'd never been. First days are always stressful, but this one I could barely hold myself together through. Concentrating on anything was a supreme effort and became harder and then impossible as the day and night wore on. A call about respiratory distress in the middle of the night turned into an ICU transfer. Consults I needed to make in the morning I ended up trailing off in midsentence and hanging up the phone. I couldn't carry out two step plans or thoughts. My head ached my feet started to go numb. The whole world was a fog. I couldn't write or use the computer. My hands weren't working, nor was my head. So much so that I barely recognized it. I tried to get things done so I could go home. Finally I did as much as I could and left. Somehow drove home. Stumbled to bed.

When I woke up hours later the headache was still there and the haze hadn't cleared. I fumbled with my phone and sent out texts to my family, "help" was all I could manage.

My brother called back and I mumbled with him about things I can't even remember now. He says now that I sounded awful, incoherant, and like I wasn't getting any blood to my brain. Then mom called and decided to fly down that night.

We went to the ED when she got there. I couldn't remember how to get to the hospital I'd spent three months working in every day so we ended up in another hospital where I got dilaudid (which knocked me out) and a head CT which was negative. We made it home in the wee hours of the morning and I tried to sleep more.

That's pretty much all I was able to do...sleep. I took a shower the next day and it wore me out entirely. Mom called my program director and they were concerned that I didn't have someone who was diagnosing these headaches. She set me up with a great internal med doctor who usually takes months to see, but got me in for that Tuesday.

I was still in awful pain all the time. Unable to drive. Unable to think much. Not really talking beyond what was necessary. It hurt to make expressions. It hurt to smile. It hurt a lot to sneeze.

At the doctor's appointment, I kept my head down and then waited in the dark patient room, miserable. She saw me, did a neuro exam, and consulted the neurologists by phone. They wanted an MRI and were thinking it could be some sort of element of vasculitis so recommended starting me on a 60 mg prednisone burst to see if it would help.


It didn't. The MRI they recommended showed possible brain clots on the MRA and theycalled me back at 8pm for an MRV since they looked venous. Steve and Mom went with me and waited outside the mobile unit at the ED. I was scared. I told them if anything happened that I didn't want to be a vegetable. I would donate my organs. I was tired and in pain and frightened.

They kept the whole MRI staff and neuroradiologist there just to look at my scan. And it was positive. The radiologist talked to me on the phone. He listed a bunch of venous sinuses that I vaugly remembered from Brain and Behavior in med school. Galen, Rosenthal, transverse, jugular. They all had clots. Some with 95% occulsion. I was numb and I was admitted.

At first they said I had to be admitted through the ED, but my PMD called and got me a private direct admit room which was much better. "Dr, go on up to room 1123." Steve wheeled me up. The three of us waited until the neuro intern arrived. The nurses were very nice. Rachel didn't have orders to do anything but she offered me water or juice.

When the intern arrived I got another full nuero exam. I did fine on everything except naming animals in 60 seconds. I came up with giraffe and wallabee first but then it tapered off after that and I could only think of 15.

They drew hypercoag labs and then started me on a heparin drip in the wee hours of the morning.

No one knew why I would have developed clots in my head.

I was just tired and scared.

The drip meant that I would have an constant companion of the iv pole for the duration of my stay (ten long days). I had to wrap my wrist every time I'd take a shower in the patient showers down the hall. I would be visited by the phlebotomists every six hours for the next ten days. With a new stick each time. By the end, I was quite surly with them. I wanted a butterfly needle and no tape on the cotton ball afterwards. I sent them packing if they arrived early or tried to poke me more than necessary. I don't like blood, especially not my own.

Labs started to slowly trickle back. My rehumatoid factor was high, which prompted a rheum consult which resulted in another whole battery of antibodies and rheum labs. They were concernded about antiphospholipid or lupus. My ANA was high and my c4 was low. But they wanted heme on board also, so they came to see me as well, and sent more hypercoagulability labs, which all take forever to come back.

Still no on knew what was going on. Heme wanted to overlap my coumadin at theraputic range with the heparin for two days. Every day I'd wait impatiently for my INR level to come back. They wanted it above 2.0. It came up slowly. 1.1, 1.1, 1.5, 1.9, and finally 2.1.

By that time, Steve had been at my side nearly the entire time, except when he ran out of sick days or had to leave to move all of my stuff (my lease was up and I had planned to move on top of everything). He was wonderful. We'd play games once I was able to concentrate on anything. At first it was hard for me to look at anything. It all made my head hurt. I couldn't watch TV or movies, couldn't work on the computer (with the wireless internet he bought from the hotel down the hill), couldn't read my books. But eventually we were able to play dominoes and scrabble. He'd put the score sheet on the door when I'd win and leave notes to tell everyone that my head was okay and the "rehab was complete." He'd get the nurses when I needed meds or help or when I had another bad headache and got scared again. He was there when the doctors would trickle through and tell me bad news flippantly and then just leave me to process it alone.

I don't know what I would have done without him.

Being a patient in the hospital is not fun at all. You are awoken all the time. It's impossible to sleep well (although we were very cozy on the small bed--he'd wake up with the rail imprinted on his back and I had to make sure my iv was ok all night). Then there is the boredom. Fortunately I knew people, so I'd get some visitors and my room was filled with flowers which I loved. When I felt up to it we'd go for walks with iv pole rolling along with us. Sometimes we'd go sit on a bench or on the lawn for a while. One evening when he had to work, I was out at 5 pm, watching everyone else get to go home for the day. And I'd been there eight days by then. I went back up to my room when my iv started beeping that it had a low battery. Plus it was dinner time.

You get into this routine where you live from meal to meal, med delivery to med delivery, phlebotomist to phlebotomist. I was constatly glancing at the clock. The routine sometimes felt like all that stood between me and insanity. All that I had to look forward to.

And the food wasn't bad, as everyone had feared. It was actually quite good most of the time. I grew used to the condiments that I didn't like. Steve would eat whatever I didn't want. The nurses quantify what percentage of your meal you eat, so I'm sure I looked like I was eating a lot more than I was. The only food item that was really bad was this fake egg brick thing for breakfast some mornings. I'd lift the turquoise plastic keep food warm thing with trepidation each morning. One night we got bored and went down to the cafeteria and bought four different kinds of cake because we couldn' t make up our minds.

They put me on strict I/Os at first (ins and outs) which means that you're supposed to save all your urine in this toilet hat thing and tell them when you have a bowel movement. I refused that right away. I had brain clots; there was no reason for them to need to know how many mL of fluid I consumed and passed each day. But they'd still ask me to estimate how much I drank and how many times I peed. Sometimes I'd mess with them a little; when I did that, Steve said he knew I was feeling better.

And at first they had me on q4 (every four hours) neuro and vital checks. Neuro checks conisted of the nurse shining a flashlight in my eyes and asking if I were numb anywhere. Not fun to be woken up to that. My blood pressure is always pretty low. A couple times when they'd wake me up in the middle of the night it was 80/40 ish and they'd make me wake up and roll over and wiggle around until it came back up.

The morning that I saw bugs on the window, I bought myself another MRI. With the bad headache I got a head CT because they were afraid of intercranial bleeding with all the blood thinner I was on. Other than that it was sort of routine. The changes would come with the doctors came by. My neuro team and the rheum and heme people.

The labs started to look more and more like lupus. When the double stranded DNA antibody came back off the charts high, they were sure of it. Even though I kept denying it and asking if it could possibly be anything else. Nope, it's lupus. And, as my rheum doctor would tell me in clinic later, "it's not good." Nice.

I'd had joint pain for years, always have been sensitive to the sun, took sulfa once in college, had wierd Ab results in the past, have had chest pains, and now the clots while I was on estrogen. I guess it fits, but I don't like it.

I had the neurology fellow go over my MRI with Steve and I on my second or third day there. I was expecting subtle findings, but even I could see the huge places where blood was simply not flowing at all. There were threads through areas that was the entirety of the blood flow to that area. The pressure build up had caused places of my brain to die completely (and once neurons die, they're gone). I had grew infarct areas in my basal ganglia and pallidum lucidum. They resident essentially said that my brain now looked like an 80 year olds who had atherosclerosis and had smoked her entire life.

Then a few days later, the heme resident said this could have been "catestrophic." I supposed I'd known that, but I hadn't thought about it in those words. Or in that entirety of realization.

I could have become a vegetable. I could have died.

Sometimes even now I think that would have been better, but only when I'm very sad or depressed. Most of the time I feel like I have too much left to do and too many people left to love and enjoy.

It's interrupted everything, though. I'm off work now and going to doctors appointment all the time. I'm on coumadin so I have to go to that clinc with all the old people. I need to follow up in stroke clinic, I see a rheumatologist, neurologist, and hemetologist. I have more doctors than my 86 yo grandfather, and I take just one less pill than him per day. They have me on prednisone (which means I'm jittery, hyper, moody and can't sleep well sometimes), but are going down on that a little, thank goodness. I'm on hydroxychloroquine for lupus. Then still on the tylenol since the headaches aren't quite gone.

I don' t know where this is all going.

I know many people have been worried about me and I have felt more loved than ever. That helps so much.

Most of the time I'm just trying to keep my head on straight and figure out what to do in the immediate future. I worry now about having kids and sometimes feel like this makes me less of a woman and more of a burden. I'm trying to stay positive and doing okay most of the time. Ever so slowly getting my energy back and frustrated with the lethargy of that. I'll be on disability which is strange for me. Can't do any crazy outdoor things where I might bump my head. Can't eat mango or liver because of the coumadin. Not supposed to drink alcohol either, but I did have a little at my brother's wedding this weekend. We'll see if my INR is all funky at my next coumadin appointment.

It's at least a partial redefining of who I am and how I visualize myself and my future. It's a mental adjustment more than anything.

It's a journey.