This blog entry contains LOTS of TMI (too much information). Fair warning!!!
It has been three weeks since the Periodic Paralysis attack that has left me incapacitated. It has been a roller coaster on a daily basis, as usual, but so much more extreme than before. I knew that I was in an "abortive attack" and going downhill, but I so hoped I would not have a major episode like the ones I had in my teens and early 20's that left me crippled. Unfortunately, it is official and I have not yet recovered.
For those in the HKPP know, it was a "rest after exercise" attack. In summary, my muscles allowed me to barely make it through a teaching workshop, where I was on my feet for a few hours. As soon as I sat down, the attack kicked in full force and I drove straight to my sister's house. By the time I got there, I could barely lift my legs. Her stepdad and my brother drove me home and helped me walk into the house, gave me my meds (Avapro, Potassium), and helped me into bed. I put on the pulse oximeter and noticed my pulse rate flipping between the 70's and 80's down to 44, back up, down to 43, back up, then down to 3, then 2, then 1, then 2, 3, 4, then back up to the 70's and 80's again. I put the cell phone on the bed with me by my pillow and I fell asleep. I woke up the next day and still couldn't function...my body had not recovered at all and I knew I needed help. I managed to turn on my side and grab the phone, where I sent a text to my brother and to my friend Katherine, saying to both that I needed to go to the ER. My brother picked me up around 4 PM and we arrived at Providence at the same time as TWENTY-SEVEN AMBULANCES. I kid you not. There was a pile-up in Mississippi near the state line, and ambulances were being diverted from other hospitals to Providence.
The triage nurse took my info, and although I could barely lift my head, thank God I was able to speak so I could say why I was there. He said he had never heard of it. Big fat hairy deal, pal...you and every other nurse I've ever known. I was unaffected by his lack of knowledge, but not exactly thrilled that I was put at the back of the line.
So we waited. For hours. My brother talked to other waiting patients, and I sat quietly as the flaccid paralysis became worse. By the time I was given a room, I could not use my body from the shoulders down. My brother and the little nurse aide managed to pick me up and put me in bed. The nurse came in and I explained that I was in a severe Hypokalemic attack but it was important to note that my potassium level would be in normal range (HKPP is not quite the same as true Hypokalemia, it involves a downward shift often in normal range). He said he understood. Then the doc came in and I repeated myself. As I began to explain muscle channelopathy and what needed to be done (like I've had to do with all doctors and nurses in the past), he cut me off and said "Yeah I know what it is." Wait, what? I was nearly speechless, but managed to say "Oh...ok. Great, thank you." That was an unprecedented moment. The ER doc knew and believed in Periodic Paralysis. Hallelujah.
They checked my serum potassium level, and I was right. It was 4.3, which is perfect for a normal human being. Not for Kelli, unfortunately. So they hooked me up to an IV, and only two mistakes were made. One I knew and told them about, but they of course disregarded it. Sodium chloride is bad news for an HKPP patient, as excess sodium pushes potassium into the muscle cells. Therefore the IV fluids, even after they added a bolus of 40MEQ potassium chloride, did nothing to bring me out of the attack. The other mistake, that I was not expecting, was letting them give me Morphine. I had an adverse reaction and thought I was going to DIE from the pain. Had I been able to move, I would have curled up in a ball and cried. But I couldn't, so I laid there and moaned until the pain finally passed. I swear to God it was as bad as a kidney stone...I couldn't believe it. Morphine on an empty stomach is on my "NO FREAKING WAY" list from now own.
The bolus of potassium, which usually hurts to infinity and beyond, didn't faze me. I even asked them if they were sure they had enough in there, because I didn't feel the familiar blazing fire of cramping that normally comes from a KCl IV. So the Morphine was, by a mile, the worst part. Sheesh.
I could move my forearms just a little before they discharged me, but they were still too weak to use and I couldn't move my legs at all. Two nurse aides undressed/dressed me, making light of the fact that they had to strip me "butt naked"...ha. Yeah, I don't have room for shame anymore...too many nurses and doctors have seen me butt naked, thanks. My uncle showed up, my brother left, and I was discharged at 3 AM Monday...still unable to move most everything and convinced that I was either going to throw up or pass out. My uncle brought me home as I was dry heaving in his vehicle, and it was quite the experience trying to get me in the house. I had zero use of my legs and my arms were on fire at that point. After several attempts to bring me to my feet, we agreed it was not happening. I told him where to find a rolling chair in the house, and he rolled me (getting up the steps was interesting) straight to my bed, where I finally got several hours of real sleep thanks to 60mg of Flexeril (injected before I left the hospital) and a Phenergan (home script for nausea).
My primary physician's office fit me in the following day, Tuesday, and I had not improved. She saw me in the wheelchair and I told her what I needed based on what other patients in my condition were on and what the ER doc suggested. Double the potassium, switch it back to Chloride, and a PRN script for Effer-K. She didn't hesitate. I told her about the pulse ox and the numbers flipping out. She confirmed that I had probably experienced heart arrhythmia. She also signed my referral to the MDA clinic in Jackson, and I finally(!!!!!!!) have an appointment with the MDA Neurologist there on May 17th. I do not have a confirmed ride to Jackson (four hour drive), so prayers appreciated that I find one.
It has been a very rocky road. In bed most of the time, on a walker sometimes, awkwardly on crutches other times (but that doesn't last long), and I've gotten to the point where I can occasionally use two canes to go short distances in the house. My potassium intake was 40MEQ a day before the attack. It is now 80-120MEQ a day. I will take a pill and improve slightly, then decline again. I returned to the doc for a potassium check this week, and my blood levels have not budged. Still 4.3 just like in the ER. I am at a loss as to what this really means, but I have ideas. I will share more about that in a video later.
On a more interesting note, I had a television interview that will air on local south Mississippi TV in early May. The video and article will be made available online, and I will share it as soon as it is available. The lady who contacted and interviewed me was lovely, and said she was excited to share my story. I hope and pray it helps to get the word out about Periodic Paralysis and the support groups that are available online, especially through Facebook. I have no idea where I would be if I had not joined Facebook and discovered that group. It has taught me AND my doctor more about this condition and how to manage it in an attempt to not only improve quality of life, but save it. That is HUGE. I am a terrible public speaker, but I hope my segment turns out ok. I'll keep you posted.
So anyway, it has been three weeks since the "big" attack. I feel like I'm on fire. I can't sleep. I'm exhausted, weak, and miserable. But I am hanging onto hope that I will recover from this. I'm staying as upbeat as I can and I'm grateful that [some] people are finally starting to listen.
I will work on that video later. I will be talking about this experience again and adding more info, including my triggers, specific meds, history, and ideas about what is happening.
I greatly need and appreciate your prayers. Talk to you soon.