Hospital Stay: Knockin’ on Heaven’s Door

By | August 8, 2016
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hospitalFlashback: Summer 2001. I caught a virus at work in July – a nasty stomach flu, or so I thought. I was bedridden for the better part of two weeks, doing nothing but running from bed to bathroom. Finally, one day – it was a Sunday – I couldn’t even get out of bed to make it to the bathroom. I was that weak and my body gave out. My husband literally had to help me up. Right then and there, he decided this wasn’t normal and it was time for the ER. And so my hospital stay begins.

Hospital Stay: Sunday in ER

I don’t remember much. A lot of it’s a blur or lost to brain fog. But I remember the highlights, or rather lowlights. They get me into an ER bed. They pull blood. Next thing I know, they sit me up asking if I can swallow these two gigantic horse pills. Simultaneously, someone’s attaching a couple of bags to my IV and I feel “whoosh” – what felt like very cold liquid washing through my body. What’s going on?

Turns out the pills were a major dose of potassium. The “cold wash” also was potassium administered intravenously. Ok. Why? I’m told my potassium level is very low. I mean dangerously low, almost non-existent. They say I probably would have gone into major cardiac arrest within 24-48 hours if I hadn’t come in.

The blood work also indicates my electrolytes are “all out of whack.” Apparently I don’t have the right quantities or proportions of anything in my body. Huh?! I recall being moved from my original little ER space to some triage “holding area” that was neither ER nor the hospital. I’m groggy and don’t remember many details of the day. But I do remember there was an on-the-spot colonoscopy involved (yay!). Results: negative. Can’t find anything there.

As the night wore on, the ER staff surmised that I was indeed probably suffering from a bad intestinal virus: “Give it time. Let it work its way out of your system.” Fortunately, my husband took a stand. In not so many words, he told them I wasn’t going anywhere until they figured out what was wrong with me. Recall, I had already been at home sick in bed for several weeks. He wasn’t taking me back there to die.

Hospital Stay: Days 1-2

The next two days were fairly uneventful. I slept a lot. I was poked and prodded a lot. I went to the bathroom a lot. And I had to capture it in something to be examined, measured and tested. Not going into details here, but let’s just say absolutely nothing solid. I was given nothing to eat or drink. At least not on Day 1.

Same drill on Day 2. But now I’m put on a liquid diet: clear broth, jello, fluids like tea, apple juice and water. I think I may be starting to perk up a bit. Then…

Hospital Stay: Day 3

I don’t feel too bad. Think I’ll go down the hall to shower and clean up (no private facilities back then). But first, breakfast. What? Oh yay. On Day 3, I graduated to solid food, nothing too crazy – Cream of Wheat and toast – but it was solid food. I ate what I could. Now off to the shower. It hit me. It hit me suddenly, so suddenly, but so harsh. Like gremlins or some evil demon taking over my body. It’s such an intense, excruciating pain. I can’t do anything but practically keel over in the shower. It was all I could do to reach for the call button. Help. This is bad. Someone has to help me.

The nurse got me back to my room and in bed. The pain is so intense. I cry. I plead for it to stop. I ask the nurse to get a doctor and quick. I think I’m going to die. Pretty sure I’m knockin’ on heaven’s door.

Please Figure Out What’s Wrong with Me!

Finally, a doctor comes. And this I distinctly remember. I can barely get the words out. Or maybe I’m scared to get the words out. I ask the doctor to lean down so he can hear me. I whisper, “You’ve got to figure out what’s wrong with me or kill me.” The pain was that bad.

Wow. Did I finally get through to someone? Do they now know I’m not kidding around? That I don’t have some lousy virus? Something may actually be wrong with me? Because later that day, the one I affectionately call the “vampire lady” comes in. But she deviates from her usual schtick. Not pulling two vials of blood this time, but six. I ask, what’s the deal? She says the doctors ordered up some “special tests” – so special that the #1 hospital in town doesn’t even have facilities to run the tests. My blood’s being sent out of town to a special lab. It’ll be at least a day or two before the results are back. Meanwhile, no more food. Back to liquid diet. Thank God for popsicles!

Hospital Stay: Day 4

A “real” doctor (sorry, all you residents), a specialist – a gastroenterologist (GI) – comes to see me today. He has preliminary results of my lab work. My blood shows I’m testing positive to “blah, blah, blah.” All these big crazy words floating around: antibodies, Transglutaminase, immunoglobulins, blah, blah, blah. The GI suspects I have “blah, blah.” Another couple of crazy words I’ve never heard of before: Celiac Sprue. And btw, you’re scheduled for another test tomorrow – an EGD (esophagogastroduodenoscopy for those keeping track of crazy words) – to confirm the diagnosis.

Whoa? Shut the front door. Did they say I might actually have something? It ISN’T a virus. It’s not in my head. Major step forward. But now what? How do I get rid of it? Give me a pill and I’ll be on my way.

After the doc leaves, I ask the nurse: “Now what exactly did he say I have? And what can’t I eat?” This part I remember very distinctly. The nurse replies, “I think you just need to stay away from fatty foods, honey.” (Really?!) Let’s give her a break. After all, it’s 2001, the stone ages as far as Celiac Disease awareness and knowledge of the gluten-free diet is concerned.

Hospital Stay: Day 5

EGD confirms my diagnosis. I have Celiac Sprue (today better known as Celiac Disease). Now what?

Well apparently, huge dietary and lifestyle changes are required. I must meet with the hospital dietitian for instructions before I can be released. It’s Friday night though and the dietitian isn’t back until Monday. Ah, a relaxing weekend in the hospital. (Except for that English Muffin they brought with my breakfast the next day. Yeah, I questioned that!)

Hospital Stay: Monday, I Get to Go Home

Day 8 – Monday: Dietitian comes to talk with me. I learn a bit about this Celiac Sprue thing I’m dealing with. I say “a bit” because the hospital dietitian told me I was just the 3rd Celiac patient he’s seen in his 18 years with the hospital. Huh. That’s not many. So, I get some reading material and my discharge papers. Back to real life. Or so I thought.

This is my story. Stay tuned…

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Sandy Skrovan, diagnosed with Celiac Disease and gluten free since 2001
Founder and Research Director, GlutenFreeRetailHQ.com

Want to drop me a line? Email: Sandy@GlutenFreeRetailHQ.com