World Sepsis Day is September 13. I was contacted by someone on behalf of Sepsis Alliance to help spread the word. I delete 99.9 percent of pitches sent to me for this blog. But this one? It hit home.
What I meant to share in a post about sepsis awareness became a novel about my family’s experience. It was actually good for me to finally write it out.
Don’t feel compelled to read this entire post. Just know that sepsis is serious and it can kill you or your mom or your child or your best friend. That by the time those around the person who has it knows what’s going on – and I’m talking about the doctors, too – that person you love so much might be too far gone to know they’re on their way to death.
I’ve shared more facts about sepsis at the end. Please at least scroll to the bottom for those.
Two-and-a-half years ago, on a Saturday, the kids, Ed and I packed up our SUV and drove from San Diego to Cave Creek, Arizona. My parents had literally finished moving into their new home a few days before we arrived. They were still very much settling in.
Ed and my dad had their annual weekend golf tournament the coming weekend, and Ed had to go out of town for business during the week, so I figured the kids and I might as well enjoy my family while he was gone during the week, and then my mom while the boys golfed over the weekend.
Except my dad wasn’t feeling well. At all.
He’s a lot like me. Or I suppose I should say I’m a lot like him. He insists he doesn’t need to go to the doctor – or hospital – when in fact he does.
But he was sick and with all of us nagging, he finally relented and agreed to allow my mom to take him to the Emergency Room on Sunday.
A few hours later, they returned with a diagnosis that I can’t even remember, but nothing serious. He’d be fine. There wasn’t anything to worry about.
The next day, my husband left for his business trip.
And my dad continued to get sicker.
My mom and I pleaded with him to go to the ER. He refused. He’d already been a few days ago and they told him he was fine.
He’d had a 104 degree + fever for days and was becoming incoherent. I went into my parents’ bedroom and once again attempted to persuade him that he needed immediate help. He declined – sort of. He was becoming completely incomprehensible.
My mommy instinct kicked in. I needed to do something. I told my mom he could be mad at me later. I’d deal with it when he was actually well enough to be annoyed.
I walked out of my parents’ room and into their kitchen because I was thinking clearly enough to know I needed a landline, picked up the phone and called 9-1-1. I calmly told the operator that the situation was becoming very urgent and that they needed to hurry, please.
Their home was a new custom build on a large piece of newly developed property on a private street. We all worried they would have trouble finding us. The navigators on all of our vehicles still couldn’t pinpoint it.
But five minutes later, we heard the blaring sirens of the firetruck and ambulance. We’d already opened the gates and my brother was outside to usher them in.
As the paramedics and firemen came into the bedroom, his blood pressured crashed down to 70/40 or something silly low close to that. It was just the beginning – and a mild version – of the crashes that were to come, but it was very fortunate that they were there for it. I doubt he’d have recovered on his own, or even been stable enough to await their arrival if we hadn’t called until that moment.
They stabilized him enough to get him to the ER, after which he was admitted to the ICU.
And so began seven days of pure hell, where my dad would nearly die – over and over and over again – in front of my mom and me.
My dad was in a newer, fancy, donor-driven hospital near their home. It was well “cared for” by local residents – it was a very patient and family centered hospital.
This meant a lot of things, but the one that was probably the bigger blessing – and the one that made it the most difficult – was the visitor policy.
And that policy was that there was no policy for immediate family. They could sit in the ICU alongside the patient 24/7. And so my mom and I did.
My brother, who just so happen to be in town from the East Coast, couldn’t do it. He tried. He had to leave the hospital and stay at my parents’ house. Watching your dad nearly die – over and over and over – is hard to do.
Up until the day I followed the ambulance to the hospital, I had never “dumped” my kids on anyone. Mattix had just turned 3 years old and Molley was 20 months old. And since that day, I’ve never done it again.
But at that moment, I called both our former nanny/might-as-well-be-family Tiffani and my close friend Sarah and asked who could take them until Ed got back to town.
God bless Sarah. She’s married and pregnant now – but at the time, she wondered things like, “Do they need bottles? Can they eat solid food? Can they go to the bathroom themselves? How do I change a diaper? What’s a baby wipe?”
She took them for me. I know how big of a stretch it was for her. She skipped work and took two little kids – a toddler and a preschooler – because that’s what friends do. She did an amazing job. To this day, I am still grateful to her. And after she’d done her time, Tiffani took them the next day. Again, I feel nothing but gratitude. Eventually, Ed was able to book a plane and get back.
They knew my dad was in septic shock. It had progressed well beyond sepsis.
They just didn’t know what bacteria was causing it. It takes days to grow out the cultures. So he was on every heavy antibiotic there was – in extreme doses. There were 14 different IV bags feeding into his main one, all on timers, delivering doses at different times.
They couldn’t find the source of the infection, either. So they began experimental surgeries – each one a huge risk because he was so sick he might not live through it – and removed those pesky organs you don’t need that could have been the source.
“Yes, that was it. We got it. He had some ‘episodes,’ but he got through it,” the first surgeon assured us.
When he would have an “episode,” all of the alarms would go off. His blood pressure and heart rate would skyrocket to exceedingly unsafe levels. His body would stiffen. He would gasp and writhe and fight for oxygen. He would turn purple.
A bright, bold shade of purple. Like Harold the Purple Crayon, I thought at the time.
It would start in his legs and move up his body – into his torso, through his chest, down his arms, into his face. He would fight to stay conscious.
My mom and I would yell – yell – at him to stay awake, to keep fighting. They told us he had to. She was on one side of his head, holding one hand, I was on the other side, holding the other hand.
He would look at one of us and he would nod – and he would fight. And the doctors and nurses would work on him while we told him to keep fighting. For him. For us. For my kids.
By the second day, he was beginning to mutter, “I can’t,” when we’d yell at him to fight. But we’d tell him he had to, and so he would do his best.
Each time, they’d get his blood pressure down enough to quiet the alarms, his heart rate down from 240, his oxygen level up enough to force the purple to subside.
He was packed in ice. The fever was so high and it wouldn’t come down. Not after days of endless antibiotics and doses of fever reducers so high I wasn’t sure it was safe. The fevers were 104, 105 — but he was freezing. Packed in ice, covered in nothing but a towel from his abdomen to his thighs, he was freezing. He’d mumble and moan for a blanket. We had to say no. His body couldn’t take any more heat.
The “episodes” were happening more frequently. By then, we knew when they were coming. I’d run into the hall and yell for help before the alarms would even go off.
By the third day, it was becoming apparent he wouldn’t be able to fight much longer. We were so grateful they never made us leave because we knew he’d have already quit if we weren’t there to push, but now what?
That night, my favorite nurse – the one who I credit with keeping him alive – said he wasn’t going to make it without the ventilator. They’d held off on that. It’s a last resort because when the body is as sick as his, pneumonia sets in quickly and then, well… But when the body is as sick as his, it needs help, too.
This was the first time we left his side during a critical time. We didn’t have to. They offered to allow us to stay. I took my mom’s hand and said we’d wait on the other side of the curtain.
I’m so glad I did. The sounds still haunt me. It wasn’t quick. And it was awful.
That’s when I stopped feeling so confident when I would answer my mom’s regular question in the affirmative: “Laura, he’s going to be okay, right?”
We had a meeting with his medical team. I finally asked them directly: “Are you going to save him?”
One of the doctors told me yes, they were going to save him. He’s seen people just as sick – who weren’t as healthy to begin with – make it through this.
Still, we didn’t know what bacteria was causing it.
On the fourth day, they identified it. And it was bad. Very bad.
By then, I’d had my husband drop off some clean clothes for me – I’d worn that same dress I arrived in for three days – along with my laptop and my insulin. I’d have forgotten about the insulin if not for the alarms on my pump, telling me it was empty, reminding me I had four hours or so until I’d be a patient in the same hospital myself.
I googled the bacteria. And then I finally lost it. The immediate survival rate was grim.
“Bloodstream infections with xxxxx bacteria (XXXX) are one of the most serious infections in the hospital setting, a situation compounded by the increasing antibiotic resistance of xxxxx causing XXXX.”
The 30-day survival rate was less than 50 percent. Of those that survived initially, up to half would die in the year following.
I wanted him transferred to Mayo Clinic. I insisted on more meetings, plans. It was eventually determined that he’d probably die during a transfer. At about the same time, they determined he was likely to die anyway if they didn’t do something new.
We agreed to the paralytic. The risks were decent – limb death that would result in the need for amputation of affected limbs – but the alternative was worse.
So they paralyzed him, which stopped the “episodes” and gave the meds a chance to work. Because they’d finally identified the bacteria, they were able to scale down to a small handful of very strong antibiotics (with very unpleasant side effects).
The pneumonia began to set in. His kidneys began to show signs of damage from the antibiotics. We hoped it wouldn’t be much longer.
One the seventh day in the ICU, they determined it was time to take him off the ventilator. If you’ve ever been there for such an event, you know how bad it is.
Perhaps my issues with choking and feeling like I can’t breathe made it worse for me to watch. (I once pulled the camera that had been inserted down my throat out entirely during an endoscopy – that I was completely sedated for. I weighed 125 pounds. It took two nurses and the doctor to restrain me.)
But I think it’s pretty bad even if you don’t have any “issues.”
The circumstances of him regianing consciousness and the time following are not for me to share. Needless to say, they were traumatic for all of us and beyond horrible for him.
That was the first night my mom and I left the hospital and stayed at their house for some rest. It was the first time I’d slept in seven days. As it turns out, you can go seven full days without sleeping at all. I know this because I did it.
It was the first time I actually ate more than a few bites of food before throwing it all in the trash and mumbling, “I told them I didn’t want to eat.”
I’d lived off of coffee and tea, and once a day, hot chocolate so I could take a unit of insulin.
I still didn’t remember to take any of my medication that day, other than that insulin, thanks to the pump that would remind me.
The next day, the occupational and physical therapists began coming. They joined the never ending rotation of specialists. A few days later, he was moved into a stepdown unit.
Eventually, he was discharged with a PIC line, an in-home nurse that would come every day for three hours at a time, more medication than I could count and a list of instructions a mile long.
He was 58 years old. The only reason he lived through it was because he was healthy when it hit. He golfed almost daily and was incredibly physically active and in good shape.
Someone who was dealt a crappy health card in life — someone like me — would have been dead by the second day.
He was 30 pounds lighter when he came home. He could barely walk from the couch to his bedroom. Their new house was very big – but not so big that one shouldn’t be able to make it from the sitting room to the bedroom.
He had horrible nightmares. He was in so much pain.
My husband, kids and I had to go back to San Diego. I came home sick, ragged, exhausted and traumatized. The night we got home, I started throwing up and couldn’t stop. I must have picked something up at the hospital on that last day. I slept on the bathroom floor, wedged between the toilet and the plastic trash can I clung to, grateful for the cool travertine.
My mom was a wreck.
On my fourth day back in San Diego, she called me. She said it was happening again. It was “coming back.”
She called the doctors, who said he just needed more time to recover. She took him in for the blood cultures. They went home while they grew out. He kept getting sicker, despite the intense and overwhelming doses of antibiotics that were coursing through the PIC line and that he was taking orally several times a day.
My mom lost herself on the internet. Eventually, she diagnosed my dad. My mom is highly intelligent, but she’s not a doctor. Or a nurse. Or a medical tech.
She figured out what was causing the sepsis from some obscure article online. My dad was on his way back to septic shock at that point. She found a surgeon who specialized in the area who would see him after reviewing his medical records. She arranged to have them sent.
I flew back to Arizona. And finally, my dad had the correct surgery. The correct surgeon removed the source of the infection.
The following year was a long one for him. Many more surgeries. Long days, longer nights. The year after was long, too. And this one hasn’t been a picnic, but it’s better than the first one. And the second.
I came home again – after the surgery following the ICU stay – and realized something was wrong with me. We lived in a gorgeous condo on the bay in Coronado. Given the location, we’d hear large trucks on the street and we were on the ambulance path.
A truck would pass, the windows would rattle just a little. I’d think we were having an earthquake. I’d stop breathing. My head would pound. I’d get light headed. I’d have to make a conscious effort to inhale, exhale, inhale, exhale. Things would get blurry. I’d start to imagine the tsunami that was about to follow the earthquake – the one that didn’t even happen.
My rational self would tell my small child, panicked self that there was no earthquake, no tsunami and oh, by the way, your dad lived. Calm down.
My irrational self would try to listen, but she wouldn’t understand. She’d become more panicked.
I’d be outside on our deck, lounging in a chair with my laptop, enjoying the gorgeous views of the bay and downtown San Diego while the kids rode their little Cozy Coups about and giggled, enjoying their innocent lives.
The ambulance would pass. I’d get up to go look. I’d fall to my knees first. The tears would start. The nausea would set in. The breathing would become difficult. The feeling of impending doom would take over. I’d wonder if I was dying. The sirens wouldn’t stop. The sounds would get further away – just like reality. I’d get dizzy.
My rational self would tell the mess, lying in a heap on the deck, that everything was fine. That this was a result of what we went through. To get up, brush it off, do something before the kids notice.
My doctor wanted desperately to put me on anti anxiety meds, but I already had enough of a mess to deal with after having unintentionally been off my other meds for lupus and thyroid and all of the other issues I have while I was sitting in the ICU. It had been one month, and I asked for one more. I told him it was more than anxiety and I needed to deal with it on my own.
I found a counselor just a block from our home. She diagnosed me with mild PTSD, which surprised me at first, but made complete sense. I will summarize my experience with her by saying that EMDR is truly life altering. I’m a skeptic, but I went in open and raw and it changed my life for the better.
I wish my mom would have done the same. She struggled for much longer than I did.
Sepsis and septic shock are no joke. I shared a limited account of my dad’s experience from my perspective. I’m still not completely over it, but I’m okay enough. I don’t believe he will ever be completely over it, physically or mentally. The details of the story – and more importantly, the part that followed the initial part – aren’t mine to share. So I’ve shared my experience, which was nothing in comparison. And yet it was a lifetime, lived in a week.
My dad realized in retrospect that he knew he was sick. Hindsight is 20-20. But after the fact, he knew he was sick. For weeks. He brushed it off as allergies, then a cold, then some sort of mild and non-threatening infection.
He didn’t know it was something that would nearly kill him a hundred times over and change the rest of his life.
Sepsis remains the primary cause of death from infection despite advances in modern medicine, including vaccines, antibiotics, and intensive care. Sepsis, which is often misunderstood by the public as “blood-poisoning” is one of the leading causes of death around the world…
… Sepsis arises when the body’s response to an infection injures its own tissues and organs. It may lead to shock, multiple organ failure, and death, especially if not recognized early and treated promptly. Between one third and one half of patients with sepsis die…
Sepsis causes more deaths than prostate cancer, breast cancer and HIV/AIDS combined. Globally, an estimated 20 – 30 million cases of sepsis occurs each year…
…Patients surviving sepsis have double the risk of death in the following 5 years compared with hospitalized controls and suffer from physical, cognitive and affective health problems…
… Sepsis is often diagnosed too late, because the clinical symptoms and laboratory signs that are currently used for the diagnosis of sepsis, like raised temperature, increased pulse or breathing rate, or white blood cell count are unspecific. [Source: World Sepsis Day]
An Evening with Sepsis Heroes will occur on September 13. Sepsis Heroes will take over Arena NYC to honor survivors, patient’s families, and healthcare professionals who have made meaningful contributions to raising sepsis awareness.
Educate yourself. It could save your life or the life of someone you love dearly.