I woke up at midnight, choking badly. I was having an episode and my esophagus was affected. I managed to cough. Acid came up and went back down. I was unable to swallow, however, and I feel like it went down the wrong track. I gagged and coughed for a long time. I could not gasp for air, but only take small, shallow breaths. I sat up all night, hoping to improve, but I didn't. I could not swallow, take deep breaths, or speak.
If you've been following for the past year, you know I have begun having serious episodes that involve my esophagus, and vocal cord paralysis is common for me now. But this time, things were not getting better and I had never been unable to swallow for such a long period of time. I emailed my aunt and uncle to let them know that I would probably have to go to the ER. It turns out their power was out, and they didn't get the email. I would have called, but I had no voice at all...couldn't even whisper. Sent a text message to my brother, and he called them for me.
In the meantime, I got dressed and printed out information from HKPP.org. I also printed out my personal medical information. Around 8am, my uncle took me to Providence Hospital ER. On the way there, I wrote out flash cards and notes for the staff. I had a ton of info...everything I could possibly think of.
When I arrived, the staff tried to force me to speak and wouldn't accept notes. I mouthed to them what was happening, and of course they had no clue what I was saying. So I sat in the ER and waited until it was my turn, still unable to speak, swallow, take full breaths, or walk. I'm not sure how long I waited before being seen...I decided not to be OCD in timing them. :)
The doc was nice, and he read my lips well. Thankfully, he took me seriously and ordered blood work and an X-ray to check my lungs. The X-ray didn't go well because I couldn't take a deep breath and hold it. We tried twice. The portion of my lungs that the tech could make out was clear, so the doc moved on to other tests and (I discovered later) began orders to admit me to the Intensive Care Unit for Hypokalemic crisis and potential Pulmonary Embolism (DVT).
While waiting for stat labs, I was given IV potassium in 1/2 saline. I told them that saline was dangerous and must be avoided, but if Mannitol was not available, diluted saline could be used as a last resort. So, that's what they did.
I warned the doc that my potassium level would be in normal range. I cannot stress this enough, friends, that someone with Familial Hypokalemic Periodic Paralysis has episodes in very normal range. The episodes are not caused by true Hypokalemia, but the actual downward shift...no matter how big or small. I made sure to explain this (the best way someone without a voice could) to the doc. He said "you know more about this than I do, so you tell me what to do". Can I keep him?
In spite of this understanding, the ICU rejected the doc's orders for admission due to the fact that my potassium level was in normal range. So, he ordered the next best thing - Telemetry.
I was admitted to the Telemetry floor, where I was placed in a very defective DVT-prevention bed (more on that later) and hooked up to a bunch of monitors, including a remote controlled monitor that I had to wear on my chest. I was almost immediately given a Lovenox injection in my stomach. They were not taking any chances of me dying of a blood clot, that's for sure. That shot might as well have been an ice pick. Heaven knows I have had a hundred+ needles in my life, so if I say it hurt, believe me...that freakin' thing HURT.
The problem, as those of you with HKPP will already guess, was the potassium. I received another IV that evening and into the night. They got it wrong at first, and were giving me normal saline. I had to ask them to switch to 1/2 saline or Mannitol...good thing I double-checked. They changed it out, but unfortunately, that did not help. Would you believe after two potassium IVs, my level did not raise at all? It did not raise...AT...ALL. Everyone, including me, was floored. They nixed all fluids until they could decide what to do.
One thing that slowly began to improve was my voice. I managed to start whispering again on day two. I was still not able to take a deep breath, but I wasn't in visible distress and remained calm. They checked my oxygen, blood pressure, and heart rate periodically, and the numbers were acceptable.
I tried throughout the day to swallow, to no avail. The doc called in a gastro specialist, who ordered a swallow test. Unfortunately, it wasn't scheduled until the next day, so I was stuck in a defective hospital bed that continuously (incorrectly) inflated and deflated. I kid you not, it would deflate, then immediately inflate, then deflate again, then inflate again. It never stopped doing this. NEVER. I had also developed a migraine but was given no fluids, food, potassium...for 24 hours. Bad idea. Calm, perseverant Kelli became dehydrated, agitated Kelli. I sent a text to my aunt that I was going to hurt somebody. She sent my uncle up there. In the meantime, a sweet student nurse came in, saw me upset, sitting up in a chair, and asked what was wrong. I unloaded as much as a weak, whispering peacemaker from the deep south could. I told her I had been ignored for 24 hours and I was FED UP. No fluids, no potassium, no food, broken bed, nobody was listening and I was LEAVING. She was like oh no, don't leave. Please don't leave. I told her that if they did not take the information that I brought and follow HKPP protocol, I was going to start making phone calls. She said she would talk to the doctor ASAP and try to find out what was going on. I told her there was a serious failure to communicate and I was mad. She remained kind and calm, helped me shower and dress, and tucked me back into that [insert-swear-word-of-your-choice-here] bed. I still hate that stupid freaking bed. For the love of God almighty, I would have thrown that thing out of my 10th story window if I could have.
Day three was underway. The docs were discussing intubation, which was unfathomable to me (and against my Advance Directive, actually...more on that later). I was still being treated for DVT via Lovenox in the stomach. I may have been dying of Hypokalemic Periodic Paralysis right under their noses, but gosh darn it, my blood flow was stellar. :)
I was so over it, and wanted out of there. I asked for water so I could try to swallow again. I managed to get down the tiniest sips imaginable. I still couldn't produce a good swallow, but it was enough to allow trickles of water to go down the right pipe. Coughs and gagging galore, but it was finally happening at a snail's pace. I had the swallow test that evening. By then, I could swallow small-sized sips with accompanying coughs. Although labored and involved a bit of drama, I passed the test. So on the evening of day three, I started drinking a little bit of water, juice, and chicken broth. I was also able to speak with a loud whisper by then, but was still in pretty rough shape otherwise.
My potassium fell (still in normal range) and I began seeing a decline again by the time the staff changed shifts. I was on the edge of full-body paralysis, and getting very concerned because the pharmacy was still refusing to give me anymore potassium. A side note - I used to work in that very same pharmacy. I was in administration, in fact, but I chose not to ask to speak to the pharmacist. I probably should have, but I didn't want to cause trouble. I just wanted them to understand the condition and do the right thing.
Enter my hero - Nurse Cindy!!!
She was new. She read my chart and was enthusiastic and intrigued. She told me to tell her everything about the disease. We talked for a while, and I offered her the stack of papers that I brought. She is the ONLY nurse who accepted them. She took the info, read it, and Googled the condition further. I warned her and the other nurses that I was on the verge of another serious episode and something had to be done. She jumped on it...called the doc at home at 10:30pm and said "we can't let this happen". Since I could somewhat swallow again, the doc ordered the pharmacy to override their system and administer liquid potassium chloride as well as slow KCl. I was given 60 mEq at 11pm and another 40 mEq at 1am. This was repeated in the morning for a total of 200 mEq. I felt like death, people. It was rough.
But it worked. Day four, labs were drawn and my potassium level was 5.1, which was the goal. I could speak a little better, I could breathe, and I could swallow normally again. PRAISE THE LORD AND PASS THE BACON!
I ate every bit of the horrible breakfast I was given, drank more juice than I had consumed in at least two years, and resumed home medications. The doc canceled all further tests and discharged me, although I was given yet another Lovenox injection on the way out. Relentless, blood-thinning fiends.
I could not thank Cindy enough. I don't know what would have happened to me if not for her. The student nurse arrived later, helped me shower and dress again, and we talked for a while. I thanked her for being fabulous. She thought I was funny but I was dead serious. She handled me better than anyone else there.
I appreciated being able to watch TV, because it retained what little bit of sanity I had left. Needless to say, Food Network kept me company while I was going through this horrendous ordeal. Alton Brown even had me silent-laughing at one point, like Muttley or something. God bless ya, AB. I heart you bunches.
Funniest moment of the week - the bed of EPIC FAIL. It finally crapped out on me in the middle of the night and deflated completely. Imagine me butt-first in a sink hole, trying to reach the call button, and calmly asking for someone to come rescue me. We all chuckled as it took two and a half people to pull me out. I say two and half because one person was half dealing with the bed and half dealing with me, so it makes sense in my stupid mind.
My tummy still needs kisses to this day. Those Lovenox injections resulted in some impressive bruises.
Not one person in that hospital acknowledged the emergency medical bracelet I was wearing the entire time I was there. Sigh.
I am so grateful for everyone's thoughts and prayers on Facebook. Believe me, I do not take this for granted, and I never will. Thank you for loving me.
I will follow this ungodly-long entry with a (short!) video blog to recap the medical specifics...what didn't work, what did, dosages, etc. I will also share my concerns for the future where episodes, my breathing, swallowing, and Advance Directive are concerned. I know people have been wanting to know the details of my time in the hospital, and I'm sorry I'm late in posting about it. I hope all of this is helpful to someone. If you have any questions or comments, please follow this link to my HKPP blog, where you will find the same post. Comments are open over there.
Or if you prefer privacy, email me at firstname.lastname@example.org. Everything is confidential, always.