This blog entry is coming to you live from the emergency room at Lovelace Downtown hospital.
Yesterday morning I woke up feeling pretty good. Not as good as Thursday, but definitely better than I had the week prior. I went to clinic and saw five patients, ending about 12:30. I was packing up my gear, ready for the 3.5 hour drive home, when I noticed my silenced cell phone had been blowing up with calls from the 412 area code.
412: the area code for Pittsburgh. This would not be good news.
Before I even listened to the messages I tried to log into MyChart to see what I was up against but no such luck out in the boonies…iffy cell service and internet access. (I don’t access personal info on the government computer. Ever.)
I listened to my voicemail (and even that was difficult due to the crappy service) but the gist was that Dr. A wanted me to go to the ER stat because my creatinine had increased even more and therefore my GFR had dropped yet again.
I called back and spoke with her nurse and explained that “stat” was at least four hours away. And I didn’t understand what they could actually do for me in the ER. She said the doctor wanted a repeat ultrasound, but I was already scheduled for that on Monday. But she wanted it sooner along with hydration and repeat labs. So…okay.
Dr. A called me on my drive home. Luckily I was in an area where I had cell service. She reiterated what the nurse had said, and then said the words I was dreading: “I sent a prescription to your pharmacy for prednisone.”
Crap. I have had October 3rd highlighted on my calendar for months… the last day of taking that effing drug. And now I might have to start it again. She said it wasn’t a given, but she wants me to have it in case I need it. And none of this bullshit 2.5 mg dose. Not even. I’ll be back up to 60 mg a day. And then I may have to start the whole taper-down process again. Five. More. Months.
There was a big issue of how to get the lab orders to me, too long and boring to get into, but I was finally able to print them once I got home, although they were uploaded as photos so the quality sucked. I hoped the ER doc would be able to make them out.
I packed up some stuff (she said they’d likely admit me), and headed to the ER. There are closer hospitals, but this is where I’ve gone for everything, biopsy, ultrasound, scans, hematology, etc., so I just felt better going there.
I got to the ER about 6:45, early enough to beat the gunshot victims (I mean, Friday night in the Burque, y’all), but of course it was pretty busy. I signed in, and there was literally no place to sit. The waiting room was absolutely crammed with people, so I hope at least *some* of them were related.
I found a chair down a hall and around a corner and hoped I’d be able to hear my name. There was an elderly woman nearby who was clearly confused. In addition, English wasn’t her first language, and she was alone. She kept asking to lie down in a bed nearby but they told her it was dirty and needed to be changed. But she asked every person, staff and patients, who passed by her. I felt so bad for her.
To my surprise, they called my name within about 30 minutes. I explained why I was there as best as I could. I think maybe they thought they could triage me and get me out the door. Ha. Joke’s on them. I’m full of surprises.
They started an IV line, got some blood, and put me in a room. Matt, my nurse, was great. Young, newish to nursing, but already jaded and sarcastic. Loved it. He took more blood, had me pee in a cup (nope, not getting any better at that), started me on fluids, and hooked me up to the BP and pulse ox monitor.
Shortly after, the radiology tech came in and did the kidney ultrasound. He asked me a couple times about my disease, “What kind of deposits?” “Kappa deposits.” I don’t know if he was just making conversation or if he saw something out of the ordinary. I’ve had a million ultrasounds, and they all just look like noise to me.
After some time, Doctor #1 came in. I told him my saga, about my treatment in Pittsburgh, etc. I found it funny that when he didn’t know a drug (Rituxan and Aranesp), he didn’t ask me what it was; instead he tried to slyly look it up on his phone. Dufus (ha, autocorrect changed that to “ficus”). Just ask me! I’m sitting right here! I’ll tell you. No shame. You can’t know everything. He also said my disease is autoimmune. “No, it’s not autoimmune,” I corrected him. “Well, it’s a response from your immune system.” It isn’t but I didn’t argue with him. What was the point?
He left, and I never saw him again. Later Doctor #2 came in. Very nice man. Spent quite a bit of time with me. I repeated my story. He was very interested in my disease; I explained it as best as I could. He told me my creatinine was still very high, GFR very low, and started talking to me (in very general terms) about dialysis and kidney transplantation.
It’s not like this has never crossed my mind (duh), but it’s different when a doctor starts talking to me about it. It seems more imminent. I said, “But I don’t have symptoms of kidney failure. I’m not retaining fluids, I’m not peeing all the time. Something’s not adding up here.” He said yes, the rise in creatinine could be transient. Okay then. Let’s not talk about trading body parts just yet.
He told me they were admitting me but it might take awhile before they had a room for me. Understatement of the year!
I’m lucky enough to generally be able to sleep under most circumstances: noise, lights, etc. But those beds in the ER… they are not meant for people to actually lay on. And no pillow. And no ability to adjust the bed on my own. I’d have to call the nurse every time I wanted to adjust it, and I wasn’t going to do that. Needless to say, sleep was in short supply.
Sometime in the wee hours, some dude was hollering, cussing, throwing a general fit. “Fuck this, fuck that, fuck you!” Then he started repeating two words over and over (I couldn’t understand what he was saying), faster and faster. I was wondering if they would call the cops or if security was there. Then Mr. Tough Guy started screaming like a baby when they did whatever it was that they did to him. Wuss.
When Matt the nurse came in later, I asked him what that was all about. “Friday night at the ER,” he shrugged. He said that the guy was on his way to jail so the police brought him there to get him medically cleared. OH… the cops were already with him.
I must have gotten a little bit of sleep because when I woke up in the morning, breakfast had arrived. I would come to learn that they feed people EARLY in the ER. It was not even 6:00 am yet. Breakfast was eggs, Cheerios (not Honey Nut! How dare they.), zucchini bread, milk and coffee.
A new nurse, also named Matt, came in when I hit the button. I said, “Oh wow, you’re Matt too.” He said, “Oh you had the other Matt last night? That guy’s crazy.” I said, “Yeah he’s a little sarcastic. I liked it.” “A LITTLE? Did you two not meet properly??” That made me laugh.
More labs, more peeing in a cup, more saline, and more wondering when I’d get an actual room.
Shortly after 10:00, Dr. A called as we had arranged the day before. I told her I had not yet spoken to the on call nephrologist but that I had his name and phone number. She said she would call him. She gave me the name of some labs she wanted them to run. I discussed with her my confusion about having such a low GFR yet no symptoms of kidney failure, and I relayed the conversation I’d had with the doctor the night before.
“NO,” she said adamantly. “You are NOT in kidney failure. You have what we call an acute kidney injury that’s causing the decrease in the GFR, and we need to find out what’s going on.” I was relieved to hear this from her, and I clearly sensed her frustration that the other doctor had even discussed that with me. To his credit, he did say, “But I’m not a nephrologist; we’ll see what they say.”
I told Dr. A that I feel like there’s a piece of the puzzle missing. She said, “Exactly, And we need to figure that out.” She said she so wished I were in Pittsburgh because she felt very helpless with my being so far away. But she discussed her plan: if the ultrasound is normal, and the changes to my medication (stopping the antibiotic Bactrim) and the hydration bring down the creatinine levels, then I go home, and we continue on as planned. If that doesn’t help, AND the ultrasound is normal, then the next step will be another kidney biopsy, which she wants done on Monday. (Again I laughed to myself. Monday. Sure.)
The kidney biopsy was pretty simple last time and essentially no pain. It’s just that that’s the one where I have to lay on my back for 6 hours post-biopsy to reduce the chance of the kidney bleeding. (If the kidney doesn’t stop bleeding, they have to REMOVE IT.)
We won’t have a clear plan of action until after the results of the biopsy are back but in the meantime, I would then have to start the prednisone. I’m not joking when I say out of ALL of this, that’s the part that brings me to near tears. I could barely walk last time. How will I be able to work?? I’ll be back to my mantra, “It’s only temporary, it’s only temporary.”
And that’s exactly what Dr. A said: “If the inflammation in the kidneys goes unchecked, it turns into scar tissue, and that’s permanent. We can’t do anything about it. The side effects of prednisone are temporary.” Yes, yes, but when you’re going through it, it’s hard to remember that.
Shortly thereafter, Dr. G, the on-call nephrologist, came in. Very nice man. Very calm demeanor, very down to earth. He said he has spoken to Dr. A and was in agreement with the plan. He would also call my local nephrologist, although I informed him as Dr. A had told me that she was on vacation. He said he’d try to reach her partner. He said my kidney ultrasound was normal. That was good news. I will be admitted through Monday (MONDAY!!), and as an inpatient, if a kidney biopsy is needed, they actually CAN do it Monday. Had it been done on an outpatient basis, it would be a different story. So score one for them! I was wrong!
Lunch arrived at barely 11:00 am, and it was surprisingly good. Some sort of shredded beef with green chile sauce. New Mexico flair!
More saline, a wee bit of sleep, and around 4:00, I was told I finally had a room! Of course it would still take a little bit. In the meantime, at 4:24, they served dinner. (I usually eat dinner around 8:00 at the earliest. I felt like the senior citizen going for that early bird special.) Dinner was NOT good. Bland-ass chicken, bland-ass pasta, but at least some good green beans. I skipped the chicken and pasta and ate the green beans.
I was finally wheeled up to the fifth floor at 5:00. I noticed that my IV site was starting to drip blood. The nurse tried to clean it up and “save” it, but it didn’t work. She had to start a new one in my hand, which is more painful to insert but far less inconvenient. More saline. And I got some crackers! That was a treat.
And that’s where things stand for now. I’ve been trying to reassure my mom that I feel fine; I know she’s very worried. We’ll just wait and see what the labs say. Story of my life these days.