Confronting the horrible ordeal of sepsis (yet again)

Hey there, time traveller!
This article was published 29/06/2024 (782 days ago), so information in it may no longer be current.

I knew exactly what was in store for me.

When I woke up for medicine and wound care at 6 a.m. Sunday morning with the start of an incapacitating headache, I thought “here we ago again.” It was only a matter of hours before I would be full-blown septic.

As the morning went by, I felt progressively worse. The terrible body and muscle aches started. A high fever and chills. I was freezing in a room I normally joke about feeling like living in the Philippines (despite steep fees there’s no air conditioning). I was nauseous and having heart palpitations. I felt awful. I told the nurse what I thought was going on. She said I looked terrible. She took my vitals, which were all abnormal. She immediately summoned the doctor on call.

The doctor agreed with me about sepsis. He immediately said something about pulling my central line. Even in my weakened state, I was (passionately) schooling him about how we would be giving the antibiotics a chance to work before making any decisions about pulling lines. That’s up to my infectious disease specialist anyway, not doctors on call who don’t know me. I will require central access for as long as I am alive, so we can’t pull a line every time I get an infection. That would be very harmful.

These lines cause enough harm between clots and frequent septic infections. I’m basically going for “rotor rooter” service on Monday with the possibility of stents too, because my subclavian vein has stenosis from many years of abuse. Even with treatment, it’s likely going to do the same thing again and I’ll keep needing procedures to keep the vein flowing. But the story of my stenosis, and how I would come to that diagnosis, is a whole other column.

Tests, like blood cultures, were ordered before starting potent IV antibiotics. Peripheral blood cultures are always hard because I have no veins left. It’s always an ordeal. It took well over an hour to get all the tests done, including COVID swabs (both a rapid test and PCR test). My nose did not enjoy being swabbed vigorously twice. I think I muttered something about there not being treasure buried in my sinus cavities.

We started antibiotics. My blood pressure shifted rapidly from too high to too low. Boluses of fluid were given. Labs showed my electrolytes were out of whack. So more different fluids were ordered. They asked if I wanted to go to hospital. I politely declined and said I would prefer to manage this here if it was safe and possible. I knew I would feel worse and not get proper care (like my IV nutrition) going to the ER.

Every time this happens it’s traumatic. It’s also a reminder of what can happen. Things like ICU. Things like being on a ventilator. Things that are truly scary and unpleasant. Sepsis, no matter what, is very difficult and unpleasant. It’s not an experience I would ever want anyone to suffer through.

Time is crucial in sepsis. The sooner you start treatment, like antibiotics and fluids, the better the outcomes. Delays are deadly. Would you know what to look for? Because any infection (viral, bacterial or fungal) can cause sepsis. A routine bladder infection can kill you if you miss the signs of sepsis.

Temperature is a sign — either high or abnormally low. So is having an infection. You need an infection to trigger sepsis. A mental decline is often a symptom. You may feel sleepy, confused or even be delirious. It may be hard to rouse you. You will also feel extremely ill. It may be difficult to breathe. You may have unbearable pain. You will feel very unwell and uncomfortable. A lot of people describe feeling like they are going to die.

I remember begging a doctor to not let me die before I coded last April from septic shock. That and saying my hospital room was on fire. I had a high fever and I was hallucinating. I was seeing flames as I struggled to breathe because I was going into respiratory failure. I woke up several days later on a ventilator in ICU. I would remain in ICU for about another week. Being awake on a ventilator was one of the most difficult things I have ever had to endure. If I can do that for a week, I think I can get through anything.

If you ever experience those symptoms, call an ambulance or get someone to take you to the hospital right away. Do not wait. Waiting kills people. People will go to sleep, hoping to feel better in the morning, and be found dead. Sepsis can kill in as few as 12 hours.

I was starting to feel better, but then I felt worse again. It’s frustrating. Recovery from sepsis is becoming increasingly difficult. I had sepsis at least 10 times last year. My poor body will never recover from that. That’s a lot of damage to inflict on someone who already is not very healthy.

I had almost three months with no sepsis, my longest stretch in over a year. Now, we start the clock again. The doctors have told me if I keep getting sepsis constantly, I’m not going to live much longer. I don’t even want to say how many times I have had sepsis. It’s a lot. It’s almost unbelievable. But I have so much left to do that I refuse to let sepsis be the nail in my coffin.

I told my doctor recently I want to die of something weird or obscure like scurvy. I almost ended up with scurvy for real because I was refusing my vitamin C (it was making my abdomen hurt). Someone wise pointed out to me that I don’t get vitamin C any other way. Then, I realized: I was going to get scurvy. I live in a developed country. I’m also not a pirate. I think my doctor would lose his mind if I got scurvy. Or have a cool research paper to write. But nonetheless, I started taking my vitamin C again.

No scurvy for me, thanks. Sepsis is plenty.

Shawna (Shoshana) Forester Smith is a 41-year-old chronically ill, disabled Ojibwe writer and health-care advocate who lives on a chronic-care unit at Deer Lodge Centre.