Last week brought some very dark days. Days where my family was fearing for my life. Days where I didn't even have any idea what was going on. Some of the darkest days of my life, and those of my family members. What happened, you ask? Seizures. Seizures are what happened.
I was working. Some stressful things happened, but generally I deal with things fairly well. Evidently my body decided otherwise. I was feeling terrible, and again knew a seizure was imminent. I tried so hard to get as much done as I possibly could before the seizure happened. Or should I say seizures. Yeah, more than one. Anyway, I'll get to that here in a bit. I was able to get most of my medications passed and do most of the treatments. I finally decided to retreat to a residents room and sit and talk with her a while. That's when it hit me, I knew for an absolute fact I was going to seize. I had told the other nurse working with me that I did not feel well, which thankfully she knew was code for, "I'm going to have a seizure at some point." She came in to check on me, and was talking to me a little...then the seizures started. And started again. And again. And again. I think from what they said I had at least three seizures before the ambulance arrived. They knew I would not want to go to the Emergency Room, but this was an extenuating circumstance. They just wouldn't stop. I vaguely remember the police coming, then the ambulance. The original plan was to take me to the hospital in my hometown, half an hour from where I work. But right as they arrived on the interstate, I started seizing again. The last pulse I remember seeing was 167. My body was completely out of wack. The ambulance decided to turn back and go to the local hospital across the street from the nursing home. There, I met the doctor I had called previously about a resident of mine. At the hospital, the seizures still didn't stop. I was given a loading dose of Ativan, and the last thing I remember is the doctor ordering the Ativan and the next loading dose on standby. From what I understand, the seizures continued.
It was then that the decision was made to put me in a medically induced coma on a ventilator and have me airlifted to Sioux Falls. My mother arrived, as did my dad. I was in the Critical Care Unit and extubated late Monday morning. I was hooked up to a Video EEG when I woke up, and remember very little of Monday. I was very heavily sedated still. Tuesday was a little better. I finally was able to get up and walk a little with physical therapy. They took the catheter out that day also. And the small appetite that I had before returned. I was transferred to the step down neurology unit late Tuesday afternoon. They took off the EEG leads and the EKG leads and finally let me take a shower! I can't even tell you how good it felt to shower after all of that. Tuesday night, however, was horrible! I didn't sleep more than three hours. I began having allergic reactions to the adhesive on my IV's and was itching and breaking out like crazy. I received Vistaril and Norco throughout the night to very little avail. Wednesday I worked with physical and occupational therapy a little so that they could make sure I could manage things on my own at home. Late in the afternoon, I was discharged.
I had two very nice doctors that I recall. One I don't remember very much about, as he was my doctor on the Critical Care Unit and I was heavily sedated most of the time that I was there. The other doctor was a nice man...however, neither of them really knew anything about Mitochondrial disorders. Those of us who deal with the disease seem to know more than most doctors, and unfortunately doctors seem to be unable to understand that. Both doctors told my family that because I did not have elevated lactic acid levels, that meant I couldn't possibly have Mitochondrial disease. WRONG! Had I been able to explain myself, I could have told them that. It is astonishing to me how doctors can be so clueless! So much has been ruled out, but Mito has NEVER been officially ruled out by a doctor that is credible. You can tell by talking to a doctor whether or not they know things about Mito, whether or not they are truly committed to the cause and understand the disorder. Very few doctors in the country do. Despite the awareness raising efforts of the Mito community, the medical community is still quite clueless. Case in point: the Justina Pelletier case. But yeah.
However, there are a few good things that did come out of this hospitalization. Well, one I can think of. Because the EEG showed no signs of epileptiform patterns, I was released to drive. The doctor said that because it looks as though I do not have Epilepsy, the seizures I have are very unlikely to occur when I drive. Which means I will be safe, and so will others on the road. I am still very upset about everything because I feel I am no closer to having any answers. What I really need is to get into a doctor that actually knows what they're talking about! I don't know when that will happen, but for my sanity it needs to be soon.
Also since my hospitalization, I've fallen at home. The fall has caused some more bruising and pain. I am continually frustrated because to me, things seem to be progressing. Doctors fail to see that. The doctor in Sioux Falls even said "You're healthier than I am." Oh, how I wish that were true. I know I am very fortunate compared to other Mito patients, and I rarely forget that. However, I am in desperate need of answers and support!
However, I do have a lot of support from family and friends. Especially my work family. I count myself as very blessed. I just want to figure out how to achieve some sort of stability for a while. That is ideal. I am praying desperately for answers.
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