Sarah P.

This is the story of why I it can’t possibly be my fault that certain people were elected, because I was literally in a medically induced coma at the time. I enjoy the reactions of people who think I’m joking about this and then realize I’m not.

I’ve had asthma for my whole life, but it was so mild I wasn’t even diagnosed until I was an adult, and I usually lost my inhaler because I’d go weeks or months between attacks. I was the kind of person who had some chronic conditions, but had never spent a night in the hospital (not even on the day I was born; my mom and I were discharged after a few hours.)

That all changed in the summer of 2016, when I was 35 – I suddenly was getting asthma attacks that lasted for days, sometimes leaving me unable to get out of bed. We thought it was probably allergies, and my doctors responded by giving me lots and lots of steroids. I even went to the ER a few times because I couldn’t breathe, and had oxygen saturation readings as low as 70%. But the hospital in my little town just kept sending me home, because the albuterol and prednisone helped my numbers improve.

That negligence almost killed me; the only reason I survived is that I had to go out of town my stepdad’s funeral. I wasn’t even able to walk up the three stairs to the pulpit to deliver the eulogy, and that night I texted my sister asking her to take me to the local ER in the morning because I was afraid I’d pass out if I drove myself. I hoped we could go to the ER, get me some really strong medication, and get back before my mom noticed – I didn’t want to worry her, because she had seriously just buried her husband the day before.

But the nurses and doctors there were extremely alarmed by my symptoms – I got admitted almost instantly, which is always a bad sign. They tried doing chest X-rays and a CT scan, but I couldn’t hold my arms up or lie down. They listened to my lungs and heart, and diagnosed me with pneumonia. I was sent via ambulance to the biggest hospital in the nearest city, but at that point my primary worry was still that my parents would freak out.

The last thing I remember is being in that hospital a few hours later – my new roommate freaked out when she heard the word “pneumonia” and insisted on being moved. (Sepsis and Pneumonia) I posted about that on Facebook in between political stuff, because I thought it was hilarious and stupid. My last text message was telling my family I was being moved to the triage floor; I don’t actually have any memory of that but I’ve seen the evidence. They say the memory loss is because of the sedatives and paralytics, which they gave me around midnight because I needed to be intubated; my lungs were 100% full of liquid at that point. It’s apparently much easier to do X-rays on a person who definitely won’t stop breathing because a machine is doing it for them.

My memories of the next 40 days are of hallucinations and delusions, with tiny fragments of reality mixed in. (Sepsis and Hallucinations) When things started making sense, I was in the long-term acute care hospital and couldn’t move or even stay awake for more than a few minutes. I learned that I had been in a Roto-Prone bed (it holds you upside down and looks like a torture device,) and on what my pulmonologist said was “multiple forms of life support.” My medical records are incredibly dramatic – they say I had ARDS and sepsis and I also developed severe heart failure but it takes reading like a hundred pages to figure that all out. I have Googled so many medical terms! (Sepsis and Acute Respiratory Distress Syndrome)

You can still see all the tiny IV scars on my hand and arms, and I have much bigger scars from the tracheostomy and feeding tube. I got pressure ulcers everywhere; it’s been fifteen months and the biggest ones are still indented and fragile; I had to go back to the hospital for a few days because I got MRSA in the one on my face. For a few weeks my body temperature fluctuated wildly; the lowest was below 95 and the highest was over 101, and the notes in my chart indicate the doctors were incredibly worried because that made no sense. They gave me seven different antibiotics; my mom’s diary says they were happy when it got down to just one at a time. On day 34 they got clearance from the infectious disease department to discharge me to long-term acute care, because my white blood cell counts and temperature were just within the guidelines.

There are all kinds of consequences from spending so much time immobile in bed. My hair was a giant greasy rat’s nest; my moms’ hairdresser came in and ended up cutting a bunch off. I was able to write (very badly) “Thank you” on my message board for her, which was so nice because there was an extended period when I couldn’t control my hands well enough to point at the pictures they gave me – I once tried saying I was “frustrated” but hit something like “blanket” instead. If you go six weeks without brushing your teeth, it’s excruciating to have anything touch your mouth; they used a funny little sponge on a stick to work me up to tolerating a toothbrush again. During the few weeks when I was alert (more or less) but wasn’t allowed to eat or drink anything, I became completely addicted to cotton swabs soaked in lemon juice and glycerin. There were a few days when I was only allowed Jell-O and applesauce, and I would eat five or six cups of those a day. The swallow testing was terrifying – if any of the blue dye got into your trach tube, you’d have to go all the way back to trying to swallow ice chips. The last step was “solid food” and I had a huge slice of blue lemon meringue pie because I FINALLY got to eat something normal; the previous step had been smashed-up (“mechanical soft”) food and let me tell you, chicken and stuffing that has been smashed to death is not even remotely appealing. I made myself slightly sick on the first day of normal food because I was enjoying all the different textures too much to stop; after that I realized my stomach had shrunk so much I couldn’t handle enough food to meet my caloric and protein needs. It turns out there’s a special hospital edition of Ensure; I had three or four a day because I was supposed to eat 120 grams of protein and that’s hard even if all you eat is steak.

But the worst part is the muscle wasting and nerve damage – I was a lump of immobile goo by the time I started physical therapy. It took three weeks to wean off the ventilator and feeding tube, and another month to get to the point where I could walk 50 meters and go up 12 steps. For the first week in the rehab hospital I did “weight bearing” exercises without actual resistance, because I couldn’t lift the 1/2 pound weights. Everything tingled or burned but I also couldn’t feel things that were touching me; I didn’t know about the ulcers on my feet until I saw the black stuff that shed everywhere, because the wounds themselves weren’t painful.

And there were all kinds of psychological effects from being so weak, and from the hospitals being so short staffed; it’s hard not to feel hopeless when no one answers the call button and you’ve slipped down the bed to the point you’re getting squished and so on. A few times I used my cell phone to call the reception desk in the hospital to ask them to send someone with a bed pan! Things got a lot better in the rehab hospital, because I was able to go short distances by myself and use a toilet and everything – I could even push myself in a wheelchair over to the nursing station, if I needed help.

But I still drop things, use a shower chair for safety, and need a cane or walker for long distances – and that level of functioning is considered miraculous given how sick I was. My parents were told that I’d still be in a nursing home at this point, in the rather unlikely event I survived. (Sepsis and Post-Sepsis Syndrome)

And really, I am lucky: the nightmares have mostly stopped, my heart failure is now considered “moderate,” I can swallow whatever food I want to, and my lung function is nearly at 100%. I still hate being in the hospital for even a few minutes, but I was able to go back in for a few days and only had a few panic attacks (85 days total with an IV did not reduce my needle phobia at all – I’m apparently immune to exposure therapy.) My hair is thinner and super fragile, but you can’t see my scalp like you could a year ago. I’ve gotten back feeling in my right leg (except the tip of my big toe,) and probably half of the feeling in my left leg. I can do grocery shopping on good days, and actually visit most of the departments. And things are still getting better; my mom’s taking me on a cruise and I’ve decided not to rent a power scooter because the walker should really be enough.

I do want to mention that this whole thing was absolutely awful for my family – I missed almost all of the really scary stuff, and didn’t understand how bad it was until months later. Meanwhile my parents got a text saying I was in the hospital but it was no big deal, then one saying that I was moving to a different floor, and then were being told by my doctors that I was on Death’s doorstep. There were close calls for me and code blues for other people and a nurse whose job was to watch me (just me) for their entire shift in case things got worse. Their kid was in the ICU for Thanksgiving, and another hospital for Christmas, and so on. I looked so incredibly sick in the ICU, my younger sister refused to come back for a month. I was put on prayer rolls by all of my mom’s friends, and many of their friends. I hope I never understand how awful this was from their POV.

My advice to family/friends:

1. Keep a diary of the stuff that happens (med changes, new diagnoses, all those numbers on the monitors) and what doctors tell you, because it really helps when a patient wakes up to have that information handy.

2. Take care of yourself! That means drinking enough water, eating sensibly, taking breaks to walk around, having normal conversations with people you love, getting sleep in a real bed, taking showers daily, reading books about pleasant things, and so on. You should be calm and thinking/talking positive when you’re with your patient, which is much harder to do if you’re strung out on coffee and candy bars.

3. I’m serious about the positive talk; my parents were really good about this but I still got enough information to have nightmares about living in an apocalyptic nightmare where anyone could die at any time. I know this was based on stuff that happened around me, because my dreams included my stepmom, dad, and mom being in the same room at one time, which I’m not sure had ever happened before the three of them were in my ICU cubicle thing.

4. Pay attention to the nurses and medical assistants! Be sure they’re doing things like rotating the patient, tending to their teeth, doing sponge baths, etc. Talk to them if you see things you don’t understand or are worried about. Write down their names in the diary when there’s a shift change, so you know who was there when. Ask them what medication they’re administering, and what it’s used for. Pay attention to how often they show up, and whether or not they wash their hands, and talk to the charge nurse if they don’t seem to show up enough or aren’t paying attention to hygiene. Find out how much physical therapy your patient is eligible for (I got 20-30 minutes up to 3 times per week in the LTAC, and 3 hours per day in the rehab hospital) and if they’re not getting as much as they could be ask why.

5. If your patient needs glasses, or a hearing aid, bring them along just in case they wake up. Some of my confusion came from not being able to see faces or what people were doing; when I was able to gesture enough to ask for my glasses things got a lot better.

6. There are online support groups and guides and manuals for caregivers. Search Google and Facebook for stuff like “ICU delirium” and “sepsis.” But do this carefully, because some stuff out there is pretty depressing and you don’t need that right now.

And finally: there really is hope. If you’re currently lying in a hospital bed, with your fingers hurting so much from holding your phone that you can barely think straight, there’s a good chance things will get a lot better. Same with all you folks in nursing homes, and you guys sitting in the ICU hoping that your loved one will start breathing on their own again. And hey, people with PTSD: there’s treatment out there that really works.

It’s not fun right now, but that’s only part of the story. I met people in the hospital who had gotten amputations, who had to wear special helmets all the time, who were having trouble playing Scrabble Junior, and worse – but we still managed to enjoy ourselves part of the time, and we were all working hard to make the best of it and improve whatever we could. Don’t despair!