Survivor Spotlight: Cordellia Amethyste Rose

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May name is Cordellia Amethyste Rose.

On September of 2013, I remember being extremely tired and hearing a knock on the door. It was my friend, Michael and my apartment manager. They took one look at me and immediately called the hospital. A few days prior, or perhaps more than a few days, for even now the memories are foggy, I’d just had my first surgery to correct GERD. At this point, I had no idea what was going on. I was in a state of complete confusion as I listened to my apartment manager talk to the nurse at my clinic. I vaguely remember getting dressed and getting into a cab with Michael. I remember the lady asking me what I was there for and Michael trying to say something, but she wouldn’t let him; she just kept asking me, but I had no answer. It was like I was in a trance. They couldn’t help me at the first hospital, so they called an ambulance and took me to another hospital. I remember the nurse telling me that he couldn’t get a vein. He then asked me if he could use a vein in one of my feet, so I let him. I remember being in the ER and seeing my surgeon smiling and waving at me. At this point, they knew what was going on obviously, but I didn’t. I was just in a state of horrible confusion. My only symptom over those past few days was only extreme tiredness. People kept asking me over and over if I’d taken Tylenol. They asked me what I’d taken, and I didn’t remember. My brain was in a complete fog. I remembered taking my liquid Oxycodone and I made it a habit of measuring it out meticulously. I remembered having been prescribed some Tylenol, but it wasn’t until a few days later that I remembered not having filled it because it never worked for me. They kept insinuating that I’d overdosed on something, though I swore I hadn’t. I didn’t know much, but I knew I hadn’t tried to kill myself. I didn’t know at that time that Poison Control was on the phone with Michael and already verifying this.
I don’t remember at which point they told me what was going on, but I eventually learned that I was suffering from Acute Liver Failure, and that when Michael had brought me in, I’d been on the brink of death.

Over the next 4 miserable days, they’d run test after test, trying to figure it out. They’d come in 3 times a day to check my levels, as I begged to go home.
In the meantime, I kept complaining of pain in my right calf. I remember them looking at it and shrugging it off. This continued over and over. It wasn’t horrible pain, but it was enough to bother me. After 4 days or so, they finally released me, deeming me cured, back from the brink of death, saved by my friend. As I sat in the wheelchair waiting for my cab, I told the nurse, “my right calf still hurts,” and she replied, “Yeah, we still don’t know why” matter-of-factly. I didn’t take it seriously.
About 10 minutes later, the cab pulled up in front of my apartment building, I paid, and as soon as I reached the building entrance, I suddenly started gasping for air. I felt out of breath, like I’d just run half a mile, and I was obese back then, so that meant something. I made my way upstairs, thinking I should just sit down, and I would be fine. I sat and waited. I kept waiting, just thinking it would get better. I petted my cats and hoped that the gasping would end, but it didn’t. Finally, after 2 full hours, I called my on-call doctor for my clinic, and she told me to go right back to the ER. Deflated at going back after just being released, I called a cab and went back, but I felt foolish as the moment I arrived the gasping stopped. I thought surely it had all been nothing. Time would prove me wrong. They checked me out, and a doctor who was loudly chomping on gum stood with a nurse comparing my calves and trying to see if one looked more swollen. I wished he and his gum would just vanish. Over the next few hours people’s tones would change. Gone would be the garish voices, and in their place would be soothing whispers, as if at any moment I might burst. They wheeled me into a room to scan my legs for clots, and as I asked what was going on, the lady calmly said she’d found some clots in the deep veins…mostly of my right calf, the exact place where I’d been complaining of pain. There were a few in my left leg as well.
Next, they wheeled me into the CT scan, and I was wheeled back to my room without any further knowledge. I just remember that everyone was really quiet until a short, plump, and smiling Indian doctor came into the room to talk to me. She explained to me in a calm and sweet voice that I had a Pulmonary Embolism, which was a clot in my lung as well as Deep Vein Thrombosis, which were clots in my legs. She probably explained a lot more, but most of it eludes me at this day and time.
I remember lying there and asking how serious it was to all the quiet nurses and being told that it’s potentially fatal. I remember having to call Michael to tell him that I’d be in the hospital for a few more days and to watch my cats. Of course, he was obliging. I remember one nurse telling me she also happened to have worked for Poison Control upon my arrival, calling Michael an angel for running around my apartment looking for Tylenol (there WASN’T any), and being peeved that the docs were still accusing me of overdosing after she’d put that in my chart.
After being in the hospital for 4 days, I was stuck in the ICU again, being told I had something potentially fatal, being afraid of getting too upset because they told me it could travel to my brain or elsewhere, being overloaded with information about medications, shots, feeling lonely and overwhelmed to boot. I remember Facebook messenging one of my friends who happens to be a nurse and asking her to explain the medications they were talking about in the middle of the night because she was up. It helped.
I forget how many more days I was in the hospital, but I think it was only a few. I was horrified at the prospect of having to give myself shots. I was one of those people who said, “I could never do that,” but when they tell you that if you don’t, you’ll have to stay in the hospital for another 10 days, you certainly give it a try. It really wasn’t that hard.
I had to take Lovenox shots twice a day until my Warfarin levels were high enough, which took a lot longer than they’d predicted. Fortunately, with my insurance, the shots were inexpensive. I was extremely weak and needed a lot of help for the first month. My lungs felt tight, and I had a lot of pain in my chest. I remember thinking that I’d just ordered a 40-pound box of cat litter to be delivered to a store that was three quarters of a mile away and thinking it may as well have been on the moon. How was I going to get it? How was I going to do anything?
Over the next month, I learned a lot about kindness. After all, my life had already been saved by kind people in my building (Michael lives right upstairs.) My apartment manager sent her husband to get my cat litter and Michael often shopped for me because I could scarcely walk half a block without getting winded. It took about a month for me to be able to shop for myself.
I attended my doctor appointments carefully and asked everyone I could think of what they thought caused my liver failure, as this was still unknown. Nobody knew. Finally, my Gastroenterologist said his best theory, though this could never be proven, was that a blood clot had gone from my leg to my liver, causing the Acute Liver Failure. To this day, that is the only reasonable theory.
It took about 6 months for the clots to dissolve, but I was so freaked out about them that I elected to stay on the drug longer. Over the course of the next year, I went faithfully to get my Warfarin levels tested, pondered, mused, discussed, researched, etc… why they were rarely what they ought to be. I at first was overly cautious about what I ate, attributing my high or low levels to that, but then as time went on, the doctors and nurses and I agreed that unless I’d been experiencing drastic changes (i.e. drinking a gallon of juice one day and having a huge salad the next, then it really wasn’t likely to make a difference. I stopped being so paranoid and just went with the flow. The pain eventually eased over time, though it was Hell for the first few months, and nothing worked, no drug, no ointment, nothing. I just had to suffer and wait it out. I researched excessively whether to get tattoos, but anyone who knows me should know I always get what I want when I’m determined enough, so I got the tattoos, and it was all fine.
Now, it’s been roughly 3.5 years, and everything’s fine. Well, a couple of annoying things transpired: I’m no longer eligible to donate a kidney, and I also had to be removed from the marrow donation registry, both of which aggravate me to this day.
I’ve also had numerous other medical issues, and I even had another surgery to correct GERD, but that’s a whole other story. Life goes on. I’m fine. I’m glad to be alive.

 

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