We left the story at a fever of unknown origin and being admitted to the hospital. That was a year ago. It turns out that I was septic with an infection of Rhodococcus Equi. It looks like this:
Now for a little science (very little): R. Equi, since it's discovery in the 70's has caused around 200 infections in humans. It is primarily a bacteria that infects foals, and causes bacterial pneumonia. In humans, it has primarily infected people who are dying from HIV or cancer. It so rarely infects "immunocompetent" humans, that my nurse came into my room while a group of interns were standing around staring at me while I slept, and said very loudly, "Yes. It's like seeing a unicorn. Get out of here and let her sleep!" In all of the scholarly writings, there are 19 cases of immunocompetent people being infected with R. Equi. I'll give you the long and the short of it -- there are a few people with pneumonia, and a couple of people with infected wounds, and 1 other person that had bacteremia. Of all 19 of these people, only 4 survived, and the only other person with bacteremia died. In case you're wondering, that's a 2% survival rate overall, and a 20% survival rate for immunocompetent patients. Not, what you'd call, awesome.
I spent 16 days in the hospital. The longest 16 days of my life. I had a big glob (so science-y) of Rhodococcus Equi on my heart -- something which could only be seen on a transesophagael echocardiogram. In case you're wondering what that is, they put you kind of out, and shove a fairly gigantic probe down your throat to look at your heart from the inside of yourself. Not recommended -- waking up in the middle of the experience. On the plus side, it was a really funny story. Then my liver went insane. My doctors went insane. I went insane. There's really no good way to describe the experience. Except to say this: I lived. And since it happened right before Christmas, I like to think that I am a Christmas Miracle.
So, then what? I had 2 months of IV Vancomycin at the highest dose the Infectious Disease specialists had ever prescribed, plus an additional antibiotic for good measure (R. Equi requires 2 different classes of antibiotics to kill it). And then I was declared cured.
The funny thing about being cured, sometimes, is that you realize it isn't the same as being "fixed". I have never recovered my stamina or energy. I am in constant, grinding pain. I can't remember things. I am exhausted in a way that feels like I'm drowning. Most days, I consider it an accomplishment to be out of bed before noon (having my teeth brushed is extra credit). If I do something big (I call it my big doin's), it'll take me a couple of days in bed to recover. There is no mercy. There is no cheating. There is no way around it. And most days I pretend that it's fine. I've come up with an amazing amount of platitudes. I do honestly appreciate the fact that I didn't die. I found joy. I got married to an amazing person. I have pressed on. But the truth is that sometimes, when I'm by myself, it brings me to my knees. I blame myself for being lazy. I judge myself for not being amazing or interesting or fun. I am so very hard on myself, and I take anything that anyone says around my lack of energy so personally.
I keep hoping for some kind of amazing self-realization or divine meaning. I sent away my dogs. A subsequent surgery damaged my vocal chords, and I can't really sing anymore. I'm too tired to visit with my friends ordinarily. I'm too tired to work. I can't possibly be that fun to be around. I know I usually have a funny take on my own life, and that's probably why you read this, but the truth is that I'm not feeling funny right now. This just feels hard. And unfair. I feel like my life ran away without me. And having seen about twelve thousand specialists, I feel like medicine left me behind.
Maybe I'll be in a better mood soon, and I'll tell you all about why you should be nice to nurses, because if they want to, they can strand you on your poop chair and leave you there. Also, when you're really nice to nurses, they get you a private room, so you don't have to be in a room with a woman constantly stranded on her poop chair. Yup. It's like that. Always be nice to nurses... Always.
As it is, I'm just going to curl up and take a nap.
Now for a little science (very little): R. Equi, since it's discovery in the 70's has caused around 200 infections in humans. It is primarily a bacteria that infects foals, and causes bacterial pneumonia. In humans, it has primarily infected people who are dying from HIV or cancer. It so rarely infects "immunocompetent" humans, that my nurse came into my room while a group of interns were standing around staring at me while I slept, and said very loudly, "Yes. It's like seeing a unicorn. Get out of here and let her sleep!" In all of the scholarly writings, there are 19 cases of immunocompetent people being infected with R. Equi. I'll give you the long and the short of it -- there are a few people with pneumonia, and a couple of people with infected wounds, and 1 other person that had bacteremia. Of all 19 of these people, only 4 survived, and the only other person with bacteremia died. In case you're wondering, that's a 2% survival rate overall, and a 20% survival rate for immunocompetent patients. Not, what you'd call, awesome.
I spent 16 days in the hospital. The longest 16 days of my life. I had a big glob (so science-y) of Rhodococcus Equi on my heart -- something which could only be seen on a transesophagael echocardiogram. In case you're wondering what that is, they put you kind of out, and shove a fairly gigantic probe down your throat to look at your heart from the inside of yourself. Not recommended -- waking up in the middle of the experience. On the plus side, it was a really funny story. Then my liver went insane. My doctors went insane. I went insane. There's really no good way to describe the experience. Except to say this: I lived. And since it happened right before Christmas, I like to think that I am a Christmas Miracle.
So, then what? I had 2 months of IV Vancomycin at the highest dose the Infectious Disease specialists had ever prescribed, plus an additional antibiotic for good measure (R. Equi requires 2 different classes of antibiotics to kill it). And then I was declared cured.
The funny thing about being cured, sometimes, is that you realize it isn't the same as being "fixed". I have never recovered my stamina or energy. I am in constant, grinding pain. I can't remember things. I am exhausted in a way that feels like I'm drowning. Most days, I consider it an accomplishment to be out of bed before noon (having my teeth brushed is extra credit). If I do something big (I call it my big doin's), it'll take me a couple of days in bed to recover. There is no mercy. There is no cheating. There is no way around it. And most days I pretend that it's fine. I've come up with an amazing amount of platitudes. I do honestly appreciate the fact that I didn't die. I found joy. I got married to an amazing person. I have pressed on. But the truth is that sometimes, when I'm by myself, it brings me to my knees. I blame myself for being lazy. I judge myself for not being amazing or interesting or fun. I am so very hard on myself, and I take anything that anyone says around my lack of energy so personally.
I keep hoping for some kind of amazing self-realization or divine meaning. I sent away my dogs. A subsequent surgery damaged my vocal chords, and I can't really sing anymore. I'm too tired to visit with my friends ordinarily. I'm too tired to work. I can't possibly be that fun to be around. I know I usually have a funny take on my own life, and that's probably why you read this, but the truth is that I'm not feeling funny right now. This just feels hard. And unfair. I feel like my life ran away without me. And having seen about twelve thousand specialists, I feel like medicine left me behind.
Maybe I'll be in a better mood soon, and I'll tell you all about why you should be nice to nurses, because if they want to, they can strand you on your poop chair and leave you there. Also, when you're really nice to nurses, they get you a private room, so you don't have to be in a room with a woman constantly stranded on her poop chair. Yup. It's like that. Always be nice to nurses... Always.
As it is, I'm just going to curl up and take a nap.
You are awesome. Naps are good. Being alive is good. Being married is amazing. I'm glad you are writing and sharing. It's hard I know to admit the suckiness. I'm always saying things in my head like "Why am I so tired?" - and I say it every freaking day. My smart husband always says when he hears this question, "just go with it." Love you - Jess
ReplyDeleteDid you have this as well as lyme?
ReplyDeleteI had sepsis of unknown origin. I was so ill that I would not get up to get to the emergency room. Fortunately, hubby found a doctor (on a Harley) who made house calls. He said another day and I would have been dead. Fortunately, a very strong antibiotic worked its magic.
What you have been through is amazing.
You are such a special person that truly does have a wonderfully unique view of life. I am so sorry you have gone through all of this insanity. I think that you are an inspiration to others and that perhaps you should write a book. You never know who might just need to hear what you have to say and how that might just help them get through a difficult time. In the mean time be nice to you! You are special and you deserve nice!
ReplyDeleteGoddesses have that unique ability to be effortless in the face of adversity.
ReplyDeleteYou are sugar cookies and cocoa.....muffins and strawberry jam. Just the best of everything that is comfort and good. Most of all you are loved!