Sounds Worse Than It Was.

by , under personal

Well, I almost finished NaBloPoMo. Let’s all remember this as the year that I wound up in a hospital.

In the last year I’ve written a lot about how tired I am. The boys wear me out, my brother in law wears me out. I thought I was just whining… but like a lot of things, I looked back over the last year and seeing that it wasn’t just fatigue.

…I suppose I should recap. About a year ago, I started getting stomach pains and feeling a little tired. I thought it would stop, but when it hadn’t by late March, I went to the doctor. He suggested I go on a gluten-free diet, thinking that it was one of those things where a gluten-free diet might improve it. So I did. My overall health improved and even though I didn’t have a diagnosis as having celiac or a gluten-allergy, I was happy. Things seemed like they were normal.

Every so often I’d run into bouts where I’d get stomach cramps, feel light headed or sluggish. Because I live in a house filled with people who eat gluten, and do dine out on occasion (though I was dining with just gluten-free options), I’d chalk it up to being glutened.

Then recently, when I was being very careful about my diet, I realized that I was still getting stomach cramps. And had random fevers that went away with tylenol, but didn’t seem to match up with anything explainable. I needed answers.

So I went to my doctor and explained to him that I wanted a referral to a GI specialist. But this was after I’d mentioned to the assistant that I’d felt a little lightheaded during my period, so they took a quick hemoglobin count. It was low.

My doctor told me I needed to go to the ER for a blood transfusion. While my mind reeled with the logistics of that (my mom and grandmother both had fits of anemia, so I know that when a doctor says you need blood, you don’t question that), he started in on listening to my heart and asking me to explain why I was there. Which led to him shouting at me for ignoring symptoms. As I tried to explain (calmly, I should point out- I am a calm person) that I only realized they were symptoms of something else and not just inadvertent incidents of being glutened, he pulled in an assistant to “translate” what he meant. Which basically meant repeat him word for word because he didn’t think I was listening. Which I was. He was being a jerk and not listening to me.

Furious, I went home, worked out everything with my mother-in-law, and woke my husband. He drove me to the ER. I told the triage nurse my tale, and she asked what the symptoms were that I wanted to see a specialist for. The second I mentioned the fevers, I was immediately escorted to a bed in the ER. Where they drew blood and I met one doctor who shouted out a whole list of tests I’d need done in addition to the transfusion.

That’s when I learned that transfusions take 3 or 4 hours. Per unit. And I needed two. I went from what I’d thought was something straightforward to being in the middle of an episode of House.

They explained that I wasn’t just anemic, but I was low on blood. And that they needed to figure out where the blood was going. So I was definitely going to spend the night in the hospital.

So I was sent upstairs to a private room (it even had a little couch that could fold down into a bed), and started on the blood transfusion. Then a big ol’ bag of iron. I had ultrasounds done, chest x-rays taken, blood cultures done (that’s where they draw blood and put it in bottles to see if there are any infections).

I also didn’t sleep much that first night- I learned that they check on you a lot when you get blood transfusions.

Things were going swimmingly. TheBoy came by with my computer and some movies, since I’d complained about being stuck with a handful of channels that never seemed to have much on. My iron levels were going up, and while they didn’t know what was going on with my stomach pains, I’d been introduced to a GI specialist and we were going to find out.

Just before my doctor came to give me my blessing, everything went pear-shaped. I had a fever again. Not just any fever. I spiked a fever of 103. My doctor walked in, and I knew. There was no way they could send me home with a fever that high.

So TheBoy went home to get me a couple things- the hairbrush I didn’t have and clean underwear (I hadn’t expected to be there for more than the day, remember? He’d already brought me glasses & my contact stuff the night before). But he couldn’t get back. You see, the building was on lock down. He called to tell me this, just as one of the nursing assistants told me that I had to turn off my cell phone. It was a drill. She set down my dinner that I couldn’t eat (I was waiting to get another ultrasound done), and left.

Drill. I worked at Disneyland long enough to know when someone was trying to sell me a story to keep me from freaking out. When my nurse (the nurse, not the assistant) came in to tell me it might be a little while before I had the ultrasound so I’d just have to be strong and not eat my dinner, I asked him for the scoop. He asked if he could tell me something without freaking me out. I just smiled and asked if it was a bomb threat. He asked how I knew? I told him it seemed like the only reason they’d ask us to turn off our cell phones and lock down the elevators (since he would have just told me if they were backed up giving ultrasounds or if there was a mechanical problem with the machine). And it was, only he didn’t know more about it.

[Sidenote: I did learn about it the next day from my mother-in-law. Apparently a guy was upset with the hospital over his bill, so he called in the bomb threat.]

I was now on my third shift of nurses. My nurse that night took out the IV shunt that was at the bend of my left arm, which left me with the other shunt that was on my right wrist. I’d asked her to take out the left one, because I wasn’t getting any more blood- just a course of iron, and wanted to try to get some sleep. I sleep all curled up in a ball and can stay on one side all night. I just couldn’t curl up either way with that IV shunt in. The ER nurses had used so much tape it took 15 minutes to get it out. (This was easily the worst point of the trip. It hurt, I didn’t get to see my husband again, I didn’t get a clean pair of underwear… I admit, I cried a lot during that one. I also made sure the nurse knew I didn’t blame her at all)

Then I slept. I slept soundly, barely waking up when she came in during the night to start my iron. I didn’t wake up much when she put a blood pressure cuff on me at 2 am and took my temperature.

I woke up, and it was Thursday. They told me it’d been windy overnight, but I hadn’t heard a thing (it helped that my room was sort of in the perfect place to be protected from Santa Ana winds). I had breakfast, and then they prepped me for a CT scan. By this time, I was excited.

You see, I’d talked to my GI doctor again- a wonderful man. He, like everyone I talked to at the hospital understood how I had been in the wrong mindset to see that these were symptoms and not gluten flareups. He’d mentioned that every test I’d undergone would have been something he’d asked me to do so that they could eliminate my symptoms as being something related to anemia.

In fact, by the second day, both doctors were agreed that my anemia was the most immediate issue with my health- but that it was a symptom of something else. And both men agreed that if the CT scan cleared things up even more, that I could go home on Thursday.

Which is what happened. It didn’t just clear things up, it narrowed down the problem. It looks like (and I’m saying this because I haven’t had the final tests needed to say it is with 100% certainty) either Crohns or Ulcerative Colitis. But you know- it’s much closer to an answer… and for that I’m extremely grateful.

This seems like a lot. But for most of the time, it was just me in the bed, searching for something to watch on television. The nurses were all wonderful (all four nurses and five nurse’s assistants I met), as were everyone else I came into contact with- the doctors, the people who wheel you from point A to point B, the people from the financial office, the woman in charge of the meals (who seemed to appreciate my input on their gluten-free meals: make gravy w/ cornstarch), and even the housekeeping staff. All were friendly. (Though my mother-in-law pointed out that likely a lot of that had to do with the fact that I’m an upbeat and friendly person on my own. My mom taught me that saying please, thank you, and using their name where possible would go a long way. And it does. As does not being a pain. I only called for help when I needed it, and tried to be as specific when paging them as I could so that they wouldn’t have to make a few trips)

It seems scary, and I admit in the ER when they were throwing a list of things they would have to do- it seemed scary then. But it wasn’t at all. It was just a shortcut through three weeks of making appointments and waiting for results. As soon as you say hospital and blood transfusion though, it just reads as being terrifying. (Sorry for anyone I freaked out)

That isn’t to say I’m 100% better. I feel much better thanks to the iron, though I’m still lower hemoglobin-wise than most of you out there. I have bruises up and down my arm and it still feels like I have the shunt in my right arm. With either diagnosis, this is something I’m going to be living with. I just know I have good partners in this to get me through it- both with my husband (who bravely watched as they hooked up the transfusion even though blood makes him queasy) and my doctors (though not my general practioner, I plan on replacing him in 2012), who were kind and understanding about how easy it is to not realize that there’s a pattern with these symptoms until time passes, or mistake it for something else.

So I will say this- if you have a persistent medical issue popping up. Whether it’s a vague stomach pain, or fevers (even if they go away with Tylenol)… document it and see a doctor. It only occurred to me today how close we are to the anniversary of Jerad’s passing. Knowing how low my iron was and realizing that I could have passed out at any time, even behind the wheel of the car… I’m glad I went to get help.

I still don’t understand his death. Why he didn’t go to the doctor when I begged him to, or why he didn’t ever mention his bout with pancreatitis that nearly killed him to them when he had gone. But it’s made me aware that I have to take better care of myself. That I need to share everything with the doctor, no matter how uncomfortable or unimportant it seems. I’m responsible for two little boys. I have a husband. It’s my job to make sure I’m there for them.

So really. Be honest. While you might not want to talk about how often you have or haven’t had bowel movements, or what color your urine has been- they’re medical professionals. Be prepared to be thorough, and if the doctor isn’t sure about what it might be, that’s when you should start telling them about the string of fevers you had or the time you vomited blood. Or in my case, that I felt anemic. Sometimes one little thing will lead you on the right track towards getting answers.

On Monday I’ll post about what this means about my gluten-free lifestyle and whatnot. For now, I think I’ll just rest up a bit more and try to catch up on the time I missed with my boys.