Friday, April 10, 2015

The Third Time I Really Almost Died

In light of my most recent dance with the gods of death, the previous two times seem like walks in the park really—barely even qualified as a threat to my mortality. This time death threw pretty much everything it had at me, and I am still here to write the story. Apparently, I am a tough cookie.
I’ve heard flu statistics…so many people get the flu, so many get serious complications, so many die…but never really took them personally. That was about elderly people or babies, or someone other than me, a relatively healthy 40 year old.
I decided the best way to relay what I went through was to recreate what my diary would have been, if I had kept one while I was sick. The following is pretty accurate I think.
Day 1 – The worst sore throat imaginable. Nausea, extreme fatigue, fever 103. Went to the ER at 2 am. Given fluids. Sent home. (Not before someone asked: “Do you have a rash?” in reference to a kind of flushed, sunburn-like cast to my skin, but which was never followed up on).
Day 2 – Went to see my regular doctor. Told I have about the worst case of the flu ever. Sent home with flu treatments. (Not before again asked: “Do you have a rash?” Again with no follow up).
Day 3 – Saturday. Doctor is closed. Back in the ER. Fluids. Sent home. Then back again. Blood pressure super low, heart rate super high. Admitted to the hospital.
Day 4+ - Barely remember anything after being admitted. Remember doctors trying to intubate me 2 or 3 times. Felt like being struck by lightning. Don’t remember the tracheotomy, thank goodness.
Unconscious for the part where they decide the “rash” is a symptom of toxic shock—after I have multiple system failure: epiglottitis, respiratory failure, heart failure.
Don’t remember the gynecological exam. Really guys? I came in with a sore throat and that’s where you go? Don’t remember delivering a roundhouse kick to the side of a male nurse’s head either. They won’t figure out the toxic shock is from a strep infection, rather than a wayward tampon, for a while.
Unconscious for the massive outpouring of love from hundreds of people on Facebook and around town. So happy to find out later that people pitched in and helped my husband by cleaning the house, grocery shopping, or just meeting James for lunch and giving him someone to talk to. 
Blissfully unaware of the fluid filling my lungs, the chest tubes thrust through my ribcage…oh so many tubes. Unaware of the 50-50 odds or the certainty of the doctors that I would have brain damage or never walk again. No concept of how hard it was for my mother to be told not to touch me because any stimulation could kill me.
Day 14 – Starting to come out of the coma as they wean me off the drugs. Can’t talk--hole in my throat. Communicate by mouthing words or writing. My hands are curled like claws. Writing is hard. Have to really enunciate with my lips to be understood. Some people are piss poor at lip reading. Sometimes I just need to try a different word. Note: “Bed pan” is too complex. “Poop” is much easier.
Day…what day is it? – Son-of-a-bword those Fentanyl hallucinations are nasty—the paranoid, horror movie kind, not the warm dragon-hugs kind I used to get on Demerol. Somehow manage, without a voice, to exercise my patient rights to refuse treatment, because I think my head has been exploded, and I’ve been transferred to a secret hospital facility in the desert where they are holding me against my will. I want to be sent to my neurologist in Seattle, dammit! James and my mom are called in early in the morning to talk some sense into me.
Day 15 - Starting to realize that, even though it all seemed so real, the only way all the things I have been seeing makes any sense is if they were hallucinations—none of it was real. But this whole tracheotomy thing is real. What’s it going to be like having a hole in my throat? Will I ever be normal again? Will I ever speak?
Rigmarole involving a crane-lifty thing, and several people, to attempt walking--only results in about 2 steps before I am completely exhausted. Well, proved them wrong about never walking again.
Middle of the night my trach tube gets blocked and I can’t breath. I dying! Nurse is trying. Doctors come flying. “You are at 100% oxygen,” they say. “Just relax! Breath through your mouth!” I reach out grasping, begging with my eyes--save me! Finally, they take the tube out. Air! Breathing again. New tube.
Day 16- Blood vessel burst in my eye, must be from last night—dark red eyeball instead of white. Gross.
Day 17 – Doc took the chest tubes out! Graduated from Intensive Care to Cardiac Care. Starting to have to take care of myself for a change. Don’t have one nurse all to myself anymore.
Trach tube comes out. The hole will close in no time, so they say.
Swallow and Speech therapists visit. No I did not know that so many muscles were involved.
Spoon fed dyed-blue ice chips and apple sauce. No blue in the trach hole—it’s a go to eat. Only thickened liquids allowed.
First meal: milkshake! Yum.
More therapists.
Wiped my own a$$!
Yikes, these nurses need my help to figure out the machines still attached to me. Need to pay attention.
Tests show that my epiglottis is not quite shutting properly when I swallow. I could die from drinking a glass of water. Might have to go home with a long-term nasal feeding tube. I am so sure that if I could just get the tube out I will be able to swallow just fine.
Trying a bit more solid food. Canned peaches. Mmmmm.
Meal times are an exercise in patience. Must sit at a 90 degree angle and take one mouthful at a time. Swallow. Swallow again. Take a sip of milkshake. Takes forever, and, then the darned feedings through the nasal tube start up—I get so full I feel like I am going to burst—my automatic feeding machine hell.
Writing is easier, but everything takes so long to write. My hands are better now that they gave me putty to exercise my fingers with.
Every time I press the call button they ask over the intercom “Can I help you?” Seriously? Mute girl here.  Tapping morse code S-O-S on the speaker doesn’t seem to help. I try to use a text to speech app on my tablet. The nurse gets a kick out of my tablet saying: “The toilet needs attention.” But I have to type every time I want to say something new (wish I could save some crucial phrases), and with my inept hands, it takes about as long as writing anyway.
Whispering is bad for my vocal chords. If I want to talk, the therapists say I have to give it a rest. Soooo hard! But I do it. No whispering for 24 hours. They told me to start practicing vowel sounds tomorrow. To try “EEEEEE” first.
Day 18 - Press my hand over my trach hole and give it a go: “EEEEEEE.” #Fistbump #balalalala
So damn excited by my voice that I say “EEEEE” to everyone who comes into my room for the rest of the day. 
All the nurses and doctors are so amazed by my recovery—like, the way they say it, I don’t think any of them believed I would.
My speech sounds start getting more complicated and I start talking for reals in short bursts, with long rests. My chatterbox nature wins out and I am talking much more than I probably should.
I get so many awesome visits from friends and family, but I start getting tired of long visits…like mom: staring at me intensely, saying: “don’t feel you need to entertain me”….arrrg! Is kicking my mom out a sign I am getting better? I think so.
Day 20 – The nasal tube gets blocked. Hallelujah, they pull it out! But now I am swallowing like a rock star. I don’t have to go home on a feeding tube. Mealtimes are still an exercise in patience though. And now I have to actually eat all my food—no more automatic feeding machine. It’s exhausting.
Day 21 – They are letting me go home!
Stairs for the first time O – M – G that was hard.
Day 22 – Is it just me or were the stairs a lot easier the second time?
Step forward.
Step forward.
Step forward.
Day 25 – 10 steps back. In the hospital again. What is going on? I don’t feel good. The hospital takes scans and sees a collection of fluid in my chest. They don’t want to touch me with a 10 foot pole. It might be an abscess. Ambulance to the nearest hospital where they can handle a chest-cracking surgery to take an abscess out. Well I finally got my wish to be in a Seattle hospital…only they sent me to Virginia Mason instead of Harborview.
Day 26 – CT Scans. I think I have had 5 in the last 7 days. Cardio-thoracic surgeon laughs it off. All that worry for nothing. It’s just fluid—no abscess. A little antibiotics and I will be right as rain.
Day 28 – Sent home again. Two hour drive. Ugh.
No more air coming out of my trach hole. Never thought it would be so good to be a mouth-breather. Still a wound on the outside, but must be closed on the inside, which means I can talk without pressing on the hole with my fingers. I still do it though. Habit.
Why can’t I eat?
Day 30 – No. No. No. Don’t feel well again. Please, not back to Seattle. It’s so far away.
Back to Seattle.
Need the strong stuff for the fluid in my chest—IV antibiotics.
Virginia Mason has a really awesome “room service” for getting meals. Just wish I could eat anything but milkshakes. I order 2 for every meal.
Day 34 – Going home soon. Still need IV antibiotics though. They need to put another PICC line in so I can be on the IV at home.
The nurse brings me a pamphelet. Now I know all the ways a PICC line can go wrong. Am I going to die? What is that tickle-feeling in my heart? Holy crap the tube is too long; it’s in my heart! I am going to die!
Shh. No it’s not. It’s my imagination. It’s nerves. Just relax.
Still having a lot of trouble eating. Yay for milkshakes—not.
Swallow a pill the wrong way and have to force-Heimlich it out of my windpipe.
Day 35 – Wake up with the worst sore throat. Crying. Why can’t I just get better? Text James. He is probably sleeping in his hotel room. It’s 4 am. Ten minutes later he opens the door to my room. He crawls into the tiny bed and cuddles me for a while. I have worn the brave face for far too long. I pour my heart out about every little worry and fear. It feels so much better.
Day 36 – They are sending me home. But I am not ready! The nurse says I don’t have to go if I don’t feel ready. Too scared. I don’t want to end up back again.
They bring a cot for James so he can spend the night.
Day 37 – The sore throat is gone just like that. I feel ready to go home. I feel better.
Day 38 – Home IV therapy is cool. I get these little tennis ball size pouches when it’s time for treatment, hook em up and let em go. It takes about 40 minutes and I can walk around with no pole to anchor me down. I go grocery shopping with one in my pocket.
We have so many cans of soup. OMG. The cupboard is full and there are cans on the counter even. But I just can’t eat.
Nothing appeals to me.
When I try to eat, it gets stuck. The swallow in my throat is fine. It’s getting stuck somewhere down in my chest.
Then it comes back up.
I try to eat a sandwich. One bite. Ugh. Back up it comes over the next hour. Then another hour, regurgitating every little swallow of saliva.
When will it end!
Day 45 – Back down to Seattle for scans and a check up. The fluid in my chest is clearing up, but the doctor asks me if I am having trouble swallowing. YES OMG YES!
My esophagus is so swollen they can see it on the scan. I have a fungal infection from too many antibiotics.
You mean this swallow thing is fixable with a few simple pills? Thankyouthankyouthankyou.
Umm, you don’t expect me to swallow that horse pill do you? Yes, liquid. Much better.
Got my new meds. IV coming out. Everything is looking up.
Day 52 – Back to Seattle for a check up. Been eating like normal for a few days. Wahoo! Tests show everything is better. No more hospital visits, no more scans! Going home for good and happy!
It’s been about 3 months since Day 1 now, and I am doing much better. The scar on my neck is just a little thing. The illness is gone; I am just still dealing with the repercussions of being mostly immobile in bed for 3 weeks. You would be surprised how fast your muscles can atrophy when you don’t use them.
My strength came back pretty fast; I just had to do stuff. Once I climbed the stairs a few times, once I stood up from sitting a few times, once I lifted a couple things, my muscles seemed to wake up and remember they were supposed to actually work. I still can’t run, but I can kind of pseudo jog. My voice is a bit funny, and I have only one pitch (no singing and impossible to whisper under my breath to someone during a movie), but it’s there and I’m alive

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