One year ago today, I was in the ICU on life support. I wasn’t expected to survive. This is a longer version of the story I posted on Sepsis.org. I hope it helps someone.
I have had ‘digestive issues’ since a few weeks before I was hospitalized while on vacation in Iceland back in 2013. At that time I had severe diarrhea, iritis, and thrush. Massive doses of prednisone brought things under control. Crohns was suspected. A colonoscopy and MR Enterography turned up nothing but self-limiting colitis. I was fine for a few years, but then started having flare-ups of GI spasms and diarrhea every year or so that seemed to be set off by food allergies. After a course of prednisone, the symptoms would subside and I felt fine although my CRP remained in the high teens.
During all this time I continue to walk 4 miles a day, workout twice a week with a trainer, and eat an organic, whole foods diet.
In 2019, I had two colonoscopies (one locally and another at Johns Hopkins) that showed a lot of pseudopolyps from previous inflammation and some patchy spots of inflammation—still not “classic” IBD. I was given a possible diagnosis of eosinophilic colitis. I also had an impacted kidney stone requiring a stent (another possible side-effect of GI inflammation). I seemed to be on the mend when I began to have random spasms, some diarrhea and face flushing. This time was a little different because it was up under my right rib. I thought maybe I had a stomach ulcer or gallbladder problems. I thought I was developing food intolerances on top of my food allergies. I went on a low histamine diet. A FODMOP diet. I tried all kinds of supplements like oregano oil and peppermint tea and digestive enzymes and hypnosis and acupuncture.
Throughout 2020 until the summer of 2021, I was on and off prednisone. A CT to look for kidney stones in January of 2021 showed something in my upper right transverse colon. My gastroenterologist said it was just the area where I had a lot of pseudopolyps. By then I had something that felt like a little animal making a nest under my ribs. I also had tremendous noise coming from my right intestine. My daughter said it sounded like storms.
By July of 2021, I was in bad shape. I was in tremendous pain; my legs were swelling up, I developed thrush. I was nauseous. My gastroenterologist thought I might have an infection. We did bloodwork, urine and stool testing. The only thing that came back was a CRP of 208. This still being Covid times, it took a few weeks to get a CT scan. I saw the report and it mentioned the spot where I had the pseudopolyps and previously noted thickening; I thought nothing new had turned up but the covering gastroenterologist called me later that day and told me to go to the ER.
I tell you all this because hindsight is 20/20. I was always a reasonably healthy and fit person and not prone to infections. It’s only when I write this out that I realize how ill I had become. It happened slowly starting in 2019. I should have asked for a colonoscopy in early 2021 after the radiologist wrote CT scan report said I should have one, but I hate prepping for them so I downplayed my discomfort thinking it would resolve. I didn’t even know a colon obstruction was possible. I definitely should have gone to the ER in July. Waiting to get all these tests as an out-patient cost me valuable time and put me in a bad position for surgery. If all you can do is go between the bed and the sofa, it’s time to go tot the ER. Anyways.
I remember being in the ER for hours, leaning against my daughter’s shoulder and watching episode after episode of the Golden Girls. I had books with me but I couldn’t concentrate. I remember being told I had some sort of blockage in my colon and they were going to try to put a stent in to open it. I remember prepping for the colonoscopy in the hospital and begging for a commode so I wouldn’t have so far to go to the bathroom with the IV pole and then the commode was pinching my thigh and made it bleed. I had massive pain in my calf. They discovered a DVT and put an IVC filter in. I remember being told something about needing surgery. I was asking if I should go to a bigger hospital like nearby Johns Hopkins but I was in so much pain. How would I get there? Who would I go to once I got there? I seem to remember reading something about sometimes the best place is your local hospital and my local hospital is pretty big. Both my husband and my mother-in-law had had surgeries there. I had my kids there. The oncological surgical team told my daughter they could definitely handle the colon resection. They suspected cancer, which I wasn’t aware of at the time.
And then, I don’t remember anything. I wake up and I have no idea what has happened. I’m trying to talk, but no one can hear me. PAIN. They don’t want to give me pain medication because it can effect my breathing my daughter explains. What’s wrong with my breathing? I finally get some morphine. My arms are huge and heavy like wet sand. There are purple dots all over my hands. This is not good; I’ve seen this before on Dr. G. Medical Examiner—dead people get this. My skin is yellow and waxy looking. Later someone comes by and looks in my throat. He tells me to hold still and he pulls something that looks like a PVC connector out of my throat. “What is that?” I ask. “You can talk!” he replies. Why couldn’t I talk? Then someone comes by and says it’s time to get me up and into a chair. I try to get up. Then I see my legs, they are also huge and heavy like wet sand and waxy looking with purple spots. Jeepers. She tries to help me up but my legs give out. “Just give me a minute,” I say. We try again. Why can’t I get up? I tell myself I’m probably just weak and I’ll be better later. The therapist lifts me up and puts me in the chair (it will be two months before I walk again on my own, but I don’t know this yet). The nurse asks me why I’m in the hospital and I tell her it’s because I was infected by the biological weapon the Taliban released.
That night, when the nurses change shifts, I recognize the nurse. It seemed she was part of the surgical team. I saw her in one of my dreams, she was hooking me up to something. She says she doesn’t work in the surgery ward. I am hard of hearing and was having trouble getting my hearing aids in; I couldn’t get the molds even partly in (this was from swelling in my ear canal that did not subside for another three months). The nurse got a wipeable board to write on. She wrote (or at least I think she wrote): are you educated? do you have insurance? do you know how much your care here costs? do you think everyone should be able to afford the level of care you’re getting? do you care about the environment? you can’t live if you can’t digest (this one she did write, it was on the board when they moved me out of ICU; my daughter was puzzled by it). Later, she and the other folks working there were having a long, serious animated conversation outside my door. Somehow, I came to think they were members of an environmental group and part of their philosophy was that people over fifty should be killed because they use up too many resources and contribute too little. I knew then she intended to kill me and the others were pushing her to do it and be a martyr for their cause. At first, I told myself sometimes the odds are not in your favor and you just have to die, so take a look around and go peacefully. But my conscious was like, “what? Are you really going to let yourself die to a Hunger Games quote?” I spent the night trying to convince her I was worth saving, but she put her hand over her ears and shook her head. “I just can’t have anyone over fifty living!” I told her my family would get an autopsy and she would be caught and spend the rest of her life in jail and then she came to her senses and unhooked the poison from the IV pole (the poison was designed to make my blood pressure go up until my heart gave out).
A few days later, I was moved to the step-down unit. I didn’t feel like anyone was trying to kill me there, neglect me maybe, but not kill me. I was put on a feeding tube until I could pass a swallow test. I needed insulin. And Lasix. All I wanted to do was go home and lay on my side and get a shower but everyday there was another hurdle to jump over. Finally things started to go my way: I passed the swallow test, my edema was resolving, my staples were taken out, I stopped needing insulin, my pulmonary emboli resolved, I could walk a few steps with a walker if someone got me to a standing position. I was learning to change this surgery drain on my stomach (I didn’t know then that it was a colostomy I was given while I was in septic shock because of an anastomotic leak, I had never heard of or seen any kind of ostomy before). A very nice Tech named Ola gave me an actual water bath right in the bed. I perked up after that. Like a flower after a much needed rain. Every day I begged to go home. The hospitalist asked how I was going to manage at home. Do you have stairs at home? Who is going to take care of you? I realized I couldn’t remember what my house looked like.
When I came home in a wheelchair almost a month after I went to the ER, my family had set up one of the kid’s old beds downstairs and the commode and walker leftover from my mother-in-law. Geez, I passed GO and went straight to old age. I was surrounded by heaps of wound supplies and ostomy supplies and medicine and cases of Ensure. Physical therapists and nurses would come at the worst times. I needed my daughter to come down in the middle of the night and set me on the commode. I spent my days in a lazy boy chair I couldn’t get out of until we bought a motorized one. I bought compression socks to help with the leg swelling. I would break out in rashes. And the pain. All over. Especially across my shoulders. I had to listen to a lecture about addiction from a pain specialist while in pain. I stuttered. I couldn’t bend my hands. And they hurt. I lost more hearing. My daughter would tell me where she was going and when she came back I would ask where she went. Oh, and the nausea. I was supposed to try for three Ensure Pluses a day but two was a stretch. What a vile tasting substance. I tried to organize my medical supplies but after five minutes, I broke out in a sweat and had to rest. I couldn’t get my ring on because my finger joints where swelled up. And my hair. I lost a lot of it and what was left had been retexturized. I looked like Dr. Emmett Brown from Back to the Future. Crying. Lots of crying and feeling sad. And wishing I hadn’t survived.
I thought I was done for but each day I slept a little less, stood up, walked and walked a little further, walked to the mailbox, walked to the neighbors mailbox in my pajamas. I watched every episode of Below Deck and Escape to the Country. I found I liked the Ensure better if it was very cold and over ice with a bendy straw; flat Coke, also very cold. I started taking vitamins. The wounds on my arms healed. My husband set me out in the sun, my daughter rubbed my back. I sent my husband out to get me a slice of pizza. I only could eat half, but I did finally eat solid food. I emptied my colostomy bag myself. I ditched the Ensure for Guacamole. Slowly. Very slowly. It’s been a long year, but I’m mostly recovered. I think it was around six months when I told my daughter I was starting to feel more like myself. Now almost a year out, I got my IVC filter removed and came off the Eliquis. I’ve had a colonoscopy and a Gastrografin study to look at possibly having the colostomy reversed. I still struggle to keep track of what I’m doing, I can’t close my hands all the way when I wake up, and I definitely lost more hearing (I was already profoundly hearing impaired). All things considered, I guess that’s a pretty good recovery from a very near-death experience. I’m still haunted by the fact that I could have avoided this.
I was aware of sepsis. I knew it was caused by a severe response to an infection, but I was never prone to infections and I never knew anyone with sepsis. I requested and got all 7,000 pages of my hospital records. The days when I was in septic shock are difficult to read: intubation, sedation, blood transfusions, pressers, antibiotics, echocardiogram, and almost unbelievably, a second surgery while I was in shock. My husband said I was in a massive amount of pain the two days between my first surgery and the onset of sepsis. On the second day, he said I began having trouble breathing and when he got the nurse, they sprang into action and whisked me straight away to the ICU. The day after my second surgery (the one while I was on life support) I took a turn for the worse and wasn’t expected to make it. I still feel scared, scared that I will get sepsis again and this time I won’t recover as well. I never imagined I could get a blockage in my colon and that it could wreak such havoc.There’s only one direction to go and that’s forward and hope for the best.