Many times over the past few weeks, I've found myself wanting to blog... but I just couldn't. I don't know why, and I have no excuse other than probably laziness, or distracted thoughts, but... here I am.
I was hospitalized for three days February 15th to the 17th... I was winding down for bed and the cough that started late December and never went away was, still, bothering me. I started coughing and as happened occasionally felt the strong need to cough something UP. I've been coughing up mucus for months at this point so I go in the bathroom and cough into the sink. Blood. I know thats not good, but its hardly any reason for panic. I wash it down the sink and go to bed. I wake up the next morning and go about my business, coughing here and there... and then sometime around 10 I feel the need to cough something up again. There's an empty cup handy on my desk so I use it. More blood. I decide I probably shouldn't ignore a two month long cough that is now producing blood, so I call my mother to see what she thinks. I'm far from worried, at this point, I'm more annoyed than anything. She sounds concerned and tells me to ask a nurse at the pulmonologist's office what to do. I call over there and explain my situation to the nurse and she tells me that, just to be on the safe side, I should go to the E.R.
This was certainly not how I planned my day, and considering that I had the first good Valentine's Day of my life, not really how I wanted to bask in the afterglow. Begrudgingly, I pack myself into the car and drive across town to the only hospital that has, thus far, not ever pissed me off. (Also the hospital where my pulmonologist works, so, yanno... double win.) I explain to the admitting nurse that I am an EDS patient with POTS syndrome, a two month long cough, blood, but otherwise, no issues. Its here that I realize how much my EDS diagnosis has changed things, and I'll explain. I waited for almost an hour for a room, but since I wasn't obviously dieing, I was pretty fine with that. I don't get impatient in an E.R. waiting room needlessly. I understand triage, and again, I was far from worried about myself. I was mostly just annoyed that I was there in the first place. I'm taken back to my own private little room in the chest pain area, just in case, they said. EKG was normal, since I was laying down, and they drew all kinds of blood for tests I never did bother to ask about. A chest x-ray was ordered, and by noon I just wanted to go home. My mother works across the street from this particular hospital, so thats always nice. I had spent the night before with... We'll call him Ray as a nickname, which I'll explain later. Anyway, I text Ray and ask him if his phone gets pictures, he says it does. To cheer myself up and make light of my situation, I take a picture of myself with my totally awesome hospital gown and send it to him. He told me later he thought it was a joke, but when he realized I was serious he got pretty worried. I assured him I was fine and that they were just playing it safe, but he asked to come see me.
Wait, what? A man wants to come see me... while I'm in the hospital? I wasn't sure he was serious, and insisted that it wasn't necessary, but he argued that he wanted to, so I told him it was fine. So early afternoon (still in the E.R.) he arrives just after my contrast CT. The contrast IV insertion hadn't gone well, I'd bled all over the place, and by this point I'm tired, hungry, cranky, and I REA:LLY WANT TO GO HOME. So, I was certainly far from my best. He comes in and wakes me from my light nap to give me a kiss, ask me how I am, etcetera... and here's the part that threw me the most... Ray is kind of new to my condition, hell, so am I... so when I explained that the E.R. doctor was concerned the blood and cough might be compounded by my EDS, he started asking questions about how and why and what... and not the casual passing pretend interest kind, but the kind that he really wanted to understand what was going on. I admit, I was pretty thrown off my guard by it all. Most people who ask me about EDS want a basic one sentence explanation... he wanted details of not only what it was, but how it would effect me that might have landed me where I was, in the hospital. So, needless to say, I was really pleased, and relaxed. He stayed far longer than he should have, and I was sorry to leave him go, but a kiss good-bye and a present of M&Ms made me smile for sure.
Right before he left we were told that I was going to be discharged, with strict instructions to return if this or that or the other happened. So off Ray went, and off my doctor went, Ray to class, and my doctor to get my discharge information ready.
Ten or fifteen minutes later they come back in to inform that they don't want to discharge me. The pulmonologist available that day had one online to do research, since no one in the hospital is familiar with my condition and my doctor had only met one patient with it, and their case had nothing to do with it. After some online research they turned up a case study involving an EDS patient and a bleed in the lung that led to blood build up. They were concerned that the blood I was coughing up was from a clot that had formed, and that if I went home and went to bed and that clot dislodged, that my lungs would fill with blood and I would, obviously, die. I honestly love that I'm a realistic person, because I can imagine a lot of people panicking at that point. I just sighed, and resigned myself to the fact that, worst case scenario or not, it was possible (if remotely) and that even though I hated it, it was smarter to just let them admit me and be cautious. So by early afternoon I was getting wheeled up to the fourth floor for my very own room, complete with TV and some weird basin in my toilet so they could monitor how much I peed... ew. I was bored already, but I WAS amused by the nurses' reaction to my arrival. They apparently were expecting an elderly woman based on my chart. Gee, thanks. But honestly the nurses were amazing the entire time I was there. Even though I wasn't allowed to eat for over 24 hours (to my extreme horror and frustration) they rewarded me with copious amounts of ice cream and cookies later. I probably should have, and could have, blogged during my stay, but I really just didn't want to. I just wanted to go home. Red and my mother both came to see me at different points, and at the same point one night, and Ray wanted to visit me again but visiting hours had ended before he was able to come up.
I was scanned, bled, poked, prodded, monitored, tested, and checked up on constantly. Because of my EDS and POTS, I was to wear a heart monitor my entire stay, which meant that every time I got up from restlessness or to use the restroom some poor nurse came flying to my room thinking I was having a heart attack. After a while it became less common as they realized my erratic and rampant heart rate upon standing was normal. For me, anyway. It eventually came down to a broncoscopy which revealed nothing, and I haven't coughed up blood since my second day in the hospital. They finally released me with a prescription for a powerful antibiotic, strict instructions on which of my meds I could and could not take, and when and who to follow up with and to come back if more blood presented itself. I was so happy to be leaving. Ray suggested a picnic, and I was more than happy to agree. It was beautiful, sunny, and WARM outside that day, and I wanted to be out of doors desperately. It was good to be outside, and good to be around him.
My cough has lessened, since, but certain things seem to aggravate it that I can't discern... It also turns out, the hospital is now advocating my disability case for me, and I have a phone interview on the 3rd. So, getting admitted oddly turned into a good thing for me. Also, broncoscopies suck. Seriously. I coughed up what looked like a piece of flesh when they were spraying my throat numb and I was gagging on the liquid as it built up in my throat. So that was gross...
As far as medical things go, my follow up isn't til next month, and I think personal life will have to be updated later. I'm heavily medicated tonight, and its all kicking in hard core. Time to sleep...