Saturday, May 20, 2006

Hold the Line: Or, it's Called "Catastrophic Insurance" For A Reason

Last Friday night, I felt kind of down after work so stopped in the 7-eleven on the way home and picked up a couple of hot dogs, looking for an energy boost. The hot dogs gave me heartburn, and I ended up not being hungry for a proper dinner that night. Jenn ordered her own Thai food and we watched some Babylon 5.

The next morning, I made some pancakes, as we do on Saturdays, but wasn't hungry. I tried to drink a protein shake, but my body kept insisting I wasn't hungry. Instead, I continued to drink a lot of water...

I slept all day Saturday. I felt so tired. I figured I'd been stressed all week again, taken 3 days in Indy instead of 2, stressed about the job, the book, all the stuff I should be doing. I was just tired. I was stressed out.

And so, so, tired.

Sunday, the heartburn got worse and worse. I vomited up the protein shake from the day before and started stumbling around like a drunk person, making a beeline from my room to the bathroom. I was so tired and so thirsty.

Jenn went out and bought me some Gatorade, and suggested I slow down my fluid intake and just sip my water. I felt like I had some kind of stomach flu again. Getting to the bathroom was getting tougher.

The last thing I remember is leaning over in my bed and drinking some more juice.

I was just so tired.

I just wanted to sleep forever.

And when I came to, a team of concerned hospital staff were all surrounding me and I was in some kind of windowless room. I could remember my name, and Jenn was there, and I knew who she was, but had no idea what the day was. Apparently, knowing Jenn's name and knowing I was in a hospital was a big step. When they initially brought me in, about all I knew was my own name.

So I'm told.

I have no recollection of much of anything until Tuesday; I was in and out of consciousness Sunday/Monday.

Apparently, Jenn found me standing in the bathroom at around 11:30pm or so Sunday night. She heard me breathing heavily in the bathroom, and when she pushed open the door, found me standing - dead eyed - in the middle of the room facing the door, one pupil dilated more than the other.

She managed to get me to the couch where I apparently starting vomiting red bile.

When she yelled at me, I apparently made odd grunting sounds of acknowledgement, but not coherence. Jenn called 911, and when the paramedics got me into the open air and started yelling at me, they did get actual words from me (so I hear).

From her place in the front of the ambulance, Jenn heard me tell the paramedic, "I'm fine! I'm fine!"

I could barely remember my own name, but I could tell people I was totally, totally fine and nothing was wrong with me.

But I don't remember any of that, and I don't remember anything clearly until they hefted me out of the bed in the emergency room. I'm told they put me on a general floor and I got worse; so they put me back in the ICU. I have little to no memory of Monday, but at some point Jenn came in and asked if she should call my parents. At this point, I still had no idea what was wrong with me, and Jenn had no idea how bad things were.

When my mother talked to the docotr, she said, "How serious is this?"

The doctor said, "Ma'am, let's just say she was my highest priority case last night."

A normal person's blood sugar count should be about 50-100.

When they brought me into the ICU, my blood sugar count was 640-680.

I was pretty much dead.

If I would have gone to bed; if Jenn hadn't checked on me in the bathroom; if Jenn had just shrugged and went to be early; if I was in a hotel room in Indy; I'd be dead right now.

And all I wanted to do was go to sleep. I just wanted to sleep. I'm so tired. Death, for me, was just about being so, so, so, tired.

I have been diagnosed with type 1 diabetes. This means that my pancreas has stopped producing insulin all together. Best it's been explained to me, I had the genetic propensity for diabetes, and 6-8 months ago, when I started losing all this weight and getting really thirsty and tired and stressed all the time, I got a virus. It was likely the stomach flu that took me down for a week last year. As with AIDS or cancer, my body turned not only on the virus, but on my pancreas as well.

Because I took good care of myself and was in such good shape, it's taken this long to basically break down my body. My body bled through every single defense it had, and was literally eating me alive, which is why I lost so much weight. Since I couldn't process the food I was eating, I could eat whatever I wanted, and my body burned all of my fat and muscle.

I spent three days in the ICU getting my blood taken every few hours and having my blood sugar taken every hour. They tried three times to dig into my right wrist to open up a line so they wouldn't have to tap me out every time they needed to draw blood. The third time they tried to do this to me, I was actually conscious, and thrashed on the bed while the doctor hunted for an artery with a huge needle and finally stopped - while blood rushed out all over the bed - because I was in too much pain. I'm having trouble using my right hand to turn keys in doors now.

When I was mostly conscious, one of the doctors - a cardiologist from Durban of all places - came in and explained what had happened.

My pancreas had stopped working and I was going to have to rely on insulin shots for the rest of my life.

It was like being hit on the back of the head with a shovel.

My feet started to get numb. My vision was blurry. There was pain and blood every few hours. My period started. My catheter leaked. I got thrush.

Jenn was able to sleep overnight in the room with me the first couple nights, and my mom arrived on Tuesday evening.

On Wednesday, I was moved from the ICU to the general ward; a cold, stark, lonely room with a big dirty window that looked out over the building site of a parking garage.

People in the ICU kept coming in and checking on me. I was the talk of Sunday night, apparently, and no one could quite believe I was alive. All the staff who talked to Jenn asked why I wasn't taking my shots or following my "diabetic diet."

Getting hit on the head with the diabetes type 1 shovel doesn't often happen to a 26 year old. If you have type 1, you generally get it early.

Mine pretty much brought me to death's door.

They got me off the catheter on Wednesday, but that night, my blood sugar spiked again, and they put me back on the insulin. One of my IVs came out, so when the night nurse came to check on me, she found that my arm had swelled up, and had to take out the IV from there and hook it up to the backup IV.

It was cold and dark and awful in that airless room, and when a nurse walked in at 12:30am telling me she was taking my blood again (not the finger prick but the actual digging with a needle, again), I lost it. I lost it just like a little kid and put one hand over my face and said, "No, no no."

"It's fine," she said, "you're going to be fine."

But my wrists and arms were covered in bruises and track marks. The nurses and doctors kept changing. No one knew when I was going to go home. I'd been told I was going home Wednesday, but that didn't happen. I was lucky to get the catheter out (I had to beg and beg). If you want to torture someone, put them in a dank, cold, whitewashed room and leave them alone there. Come in and randomly draw blood and confuse their eating schedules (I had one idiot nurse turn my food away because she was looking at the previous day's meal chart for me), give them a good case of thrush so by the time they're ready to eat solid food swallowing is painful, keep the lights coming on and off and having strange people come in and out and make them lie around in their own blood and urine for three days, and see how it goes.

Three days was my breaking point. I lay there in bed and sobbed and clutched at a bunched up blanket.

Then I was done.

They kept me until Thursday, after much debate among a number of doctors.

I picked up how to do the shots pretty easily, so I guess they felt it was best to send me home before my hospital bill reached 50K (we have a running bet about how much this will be. I have a $2500 deductible, then my insurance pays 80%, and I'll pay the other 20%. Guess where my money's going if I ever sell a book?).

I spent $400 out of pocket for medication, and tottered home with Jenn and my mom.

Jenn saved my life. I was and am lucky to have her. She made surviving the hospital possible. My mom's been invaluable here just for helping with basic things like taking out the trash and doing the laundry and getting us food. I'm so happy to have them both here. I love them so much.

I haven't had much time to process what all this means. I just got out of the hospital on Thursday, and right now I'm just struggling to get my blood sugar count to even out.

I'm focusing on trying not to die.

I picked up one of those bracelets that ID me as diabetic. I'm not a fool. I realize that not having a working pancreas means death's a lot closer than it used to be. Death is just so easy. It's such an easy thing - I was just going to go to sleep.

There are things I'm going to have to come to terms with - the fact that I could fall into a coma and die without anyone around is now a real, tangible concern.

I don't intend to be an invalid, of course - lot of people have diabetes- but it means that I'm going to have to work harder than other people to have the life I want.

Right now my wrists and arms hurt so badly I can't lift weights, and Jenn's giving me foot rubs to help my numb feet.

I am blessed to have such wonderful people in my life, and I think I need to take some time and enjoy that.

However, if I seem a bit drawn and pale at Wiscon (yes, I'm still going!), well, I do have a pretty good story.

34 comments so far. What are your thoughts?

clindsay said...

Holy Shit!!!

I'm so glad you're okay! I'm so glad someone found you!

You need to get a medic alert bracelet now, and you need to be good about letting someone know at work what to look for in case you get sick again. Make sure all your friends know what to do if you pass out, how to check for the smell of sugar on your breath, etc.

Do you need some help raising funds for your hospital bill? Does your insurance have an out-of-pocket limit? Some do. make sure to check.

Let us know out here in blogland what we can do.

And give Jenn a huge hug for all of us for making sure you woke up again!!!


Elizabeth said...

Yowza. Glad to hear that you're more or less ok. take care of yourself. 

Posted by Elizabeth

Kate said...

I've been reading your blog for months now, and have so enjoyed what you have to say. I'm glad you are still here to say even more.


Posted by kate

Dave said...

Holy shit. I'm glad you're OK after all that. Take care of yourself. 

Posted by Dave Schwartz

Anonymous said...

I was wondered what happened to you since you hadn't posted in a while... wow. Never thought it could have been something like that.

I'm glad to hear that you are okay and that you had someone special in your life to help!

Anonymous said...

I'm horrified just reading about the experience--I can't imagine what this must all be like. Thank goodness for the people who care about you and are helping to pull you through this. I hope you continue to improve as you regain your health and adjust to a difficult new lifestyle. I'm very glad you're still around so I can meet you at Wiscon! Hang in there.

Anonymous said...

Oh, wow. I am so sorry. I wish you the best to keep your health stable and insured. 

Posted by Ide Cyan

Kirsten said...

I was just about to post a comment asking if you were ok,as for you not blogging for a while is a bad sign. I'm very glad you're alive. And at least you know now that you have diabetes and can learn to mananage it.
Take care of yourself.

Anonymous said...

jesus fuck! I"m so glad you're alive and home. that's incredibly scary.

hospitals suck even when they are saving your life.

you are right that in a way you just lost a certain privacy or security in being alone, that "what if this had happened when i was xyz...." 8-(

so sorry.

hang in there, hope I'll see you at wiscon still.

Liz said...

"I could barely remember my own name, but I could tell people I was totally, totally fine and nothing was wrong with me. "

It is really weird how strong that impulse is to apologize and claim to be fine. My sister was saying that stuff even as the paramedics lost her pulse and she passed out.

Anonymous said...

OMG!!! I was wondering why you hadn't posted in awhile and I had been planning to call you this weekend...
Ian and I are so thankful that you are alright and Jenn was there. Please let us know if you need *ANYTHING*

Sour Duck said...

That sounds awful, I'm so sorry you went through this. And I'm so glad Jenn was there.

Take care,


Posted by Melinda (Sour Duck)

La Lubu said...

Holy fucking shit!!

Hey...about the hospital bills...yeah, your policy might have a maximum out-of-pocket expense, but that doesn't mean that you won't get hit with "over and above usual costs". If you are worried about the bills, ask to see the hospital social worker. He/she should be able to inform you of programs you may qualify for, or may be able to get you on the hospital's debt-forgiveness program (based on your income/expenses ratio---it ain't cheap to live in Chicago). Under that, you may have to fork over say, $1500 (or whatever your maximum out of pocket is supposed to be), but other charges that are above-and-beyond usual cost would be forgiven.

There's usually a time frame for this stuff though, so get on it right away! And don't hesitate to appeal any insurance refusals on certain costs...I mean, shit, you were semi- and un-conscious through a lot of this, so it wasn't like you had the ability to make choice about your care. (and get this documented!)

If your insurance plan is not an ERISA plan, then you have a few more legal protections open to you (ERISA plans are exempt from the insurance-reform legislation passed in Illinois a while back).

Trust me on this. Get loaded for bear, and fire away. The hospital will assume because you are employed and insured, that you can pay. If this isn't the case (and considering the length of your stay, it won't be), you need to divest them of this assumption now, and get the help you need before the clock runs out. You have enough to deal with; bankruptcy shouldn't be one more thing on your plate.

Unknown said...

Wow. Sorry to hear this but I'm glad your ok. Please take care of yourself, and keep the faith with your writing. I look forward to seeing your published book in the newsstands.

Anonymous said...

Holy cow! What a harrowing story. I'm so glad you are still with us, and doubly glad to hear that you are still going to make it to Wiscon. Take care...

Anonymous said...

I'm so glad you're okay, and glad you're back as well. I thought maybe something was wrong since you hadn't posted in a while. Feel better!


Shaun CG said...

I just wanted to join the others in saying that I'm really, really glad you recovered. Best of luck in adapting, and in sorting out the bills and such.

Take care.

Posted by Shaun CG

Anonymous said...

I'm so glad you are OK! Please take care. If we can help, please tell us.

Anonymous said...

Best wishes for a full recovery (in all aspects).


Roni said...

OMG...I'm glad that Jenn was there! Take care.

Anonymous said...

That sucks. Im sorry you'll have to deal with that.
As I read it, what I was thinking was how ironic it was - you worked so hard to unburden yourself of food issues and now food will become the Most Important Things. I am glad that you have your head on straight about food - it will help you.
I often compare shiocks like this to getting mugged - one day you get mugged by life and even though you never fall down, you jab back and keep fighting, you never quite regain your balance, your surety that you can hold your ground.
I wish you a speedy recovery and... forgetfullness - it can be a blessing.


Anonymous said...

Thank goodness you're okay! We love Jenn! :)

So glad to see you get your legs under you and prepare to fight!


Jeff Pollet said...

One more rendition of "Holy Shit!" followed up by "Glad you're alive" with a "Jenn is great" chaser.

It's making me think twice about my "I have to live alone" frame of mind...glad you're back, and looking forward to seeing you create a healthy life, even in the face of such crappy adversity.

Anonymous said...

oh, wow, i knew something big was going down when you didn't post for so long, but i never thought anything THIS big.

I second all the advice re: insurance bills. Get it all documented, get copies of everything and make notes/copies of all phone interactions. Especially if you don't have a cap on out of pocket expenses in your plan, just from what you've wrote, you've already paid $400 for meds and will be on the hook for $12,000 more (based on 50k total estimated). It'll suck, but you will get through this.

I am so glad you're ok! Life will be way different, but it will be ok again.


Anonymous said...

You don't do things by halves! I'm sure this was a terrible shock to you-- I'm very glad your mon and Jenn are there to help you find your new normal.

Trickish Knave said...

For fuck sake- I only just started reading this blog but this is a boot to the head.

Before I even got to the paragraph where you said it was diabetes I knew what it was.

A similar episode happened on my submarine a few years back. We found a guy passed out on the deck in berthing and after tossing him back in the rack, someone's spidey sense went off and got the corpsman.

We were only a day away from our last port when this happened and we were on our way to our area where we were to be for the next 2 months straight.

The corpsman tried to wake this guy up and after a few failed attempts it didn't take long before he called up and the EMAT team came running down to retrieve this young torpedoman. He was taken to the wardroom and an IV was administered. The corpsman knew that there was something seriously wrong with this guy and thought it might be diabetes or related illness.

It took some convincing for the Captian to turn the sub around and head back to port even after receiving a message from Squadron medical to do so. What a tool. Had we done what that inept Captain wanted to do we would have hauled a dead body around in the freezer for 2 months.

This young guy, like you, was in great shape and it was just a matter of time before his body pooped out. Needless to say he was disqualified from submarines and given a cushy shore duty job to finish his time out.

Good to hear you are ok. Whether it be a close friend or 120 submarine brothers around, either one can mean the difference between life aned death.

pensivehour said...

Hithere. I'm a faithful reader from Singapore. I'm so glad that you're fine now. I thank God for Jenn and your mom. Please do take care from now onwards, my mom's a diabetic and I'm pretty worried for her too.

God bless.

inkgrrl said...

Oh jeebus - what a fucking ordeal. I'm so sorry you have to deal with this... there's nothing to say positive that won't sound trite - I know what you mean about the "just go to sleep and never wake up." Been there. Life's not the same afterwards. Diabetes is a very well managed disease, thankfully, so you'll have lots of resources/help to stay healthy and get on with living your life the way you want.

Perpetual Beginner said...

I'll add to the chorus of "wow!" I was wondering where you had gotten to.

I'll second the advice to check into insulin pumps once you get the hang of things, witht the caveat that they do break down, so make sure you're competant on needle management first.

I have several on-line friends with Type I diabetes, if you'd like me to have one wander over here just holler. Otherwise I'll assume that you're already up to your eyeballs in advice and information.

Hugs to you, and to Jenn.

Kameron Hurley said...

Thanks, everybody. I've got my first followup appointment tomorrow.

We'll see how things go.

Anonymous said...

I'm very late on all this, but, as everyone has said, I am so glad you are still here amongst the living. Take good care of yourself.

T. Comfyshoes said...

One more holy shit, glad you're alive to tell it.

Also, there's a fantastic blog by the name of Diabetes Mine that you might want to check out - a gold mine of information that I'm so, so incredibly glad I don't need myself.

Anonymous said...

Glad to hear you're doing better by now Kameron. We hope you can manage the disease well and perhaps even gain some unlikely (but always unneeded& unwelcome) insights from the process. It's a definite hindrance in life, but with decent motivation and friends, you'll do fine. And yes, you'll have to satisfy yourself with a sip of beer at best. So you'll get used to soberly observing very drunk people regularly. Cheers & Good Luck! 'VJ'

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