Alice Downing, RN

(Update added below)

It all started with a bad headache, neck ache, “not feeling well.” I was at a friend’s house and decided to stay in bed until I felt better while he went to work. This was about 7am, Feb 27, 2015. The day was a blur for me. I stayed in bed, vomiting, had severe chills, piled on the covers to get warm. My head was killing me. Twelve hours later when my friend got home, I was having difficulty breathing, could not get comfortable, told him that I needed help. He said he would drive me. I said no, call the ambulance, which he did immediately. They arrived less than a minute, recognized how sick I was. I was whimpering trying to breathe, they put oxygen on me. All I could say repeatedly was ,”I don’t feel good. I need help.” I remember them quickly wheeling me out of his house on the guerney, into the ambulance, where they stuck IVs in both arms, wired me to monitors, temp was 103, bp 70/0…I was fading in and out as they were taking me to the hospital. They told me, we are taking you to the nearest hospital.

I arrived in ER, was immediately “pounced-on” by doctors and nurses. I kept saying, I don’t feel good, I need help. My bp was low. I was put on meds to raise my pressure, which they had to keep cranking up as I was not responding. They gave me huge amounts of fluids and steroids IV, did many blood tests and urine tests. I was told I had a massive bladder infection, was septic. The Dilaudid they gave me did nothing for my severe headache. I knew I was sick, but even being a nurse I did not grasp the severity, even when they had the ICU docs come evaluate me. (I was able to tell them my routine meds and history of systemic lupus, blood clots and take Coumadin, prednisone and pain meds for chronic pain). (Sepsis and Autoimmune Diseases)

They did a CT scan to make sure my brain was ok, which it was.

I was taken to ICU where they placed a central line in my neck for fluids, meds, etc. I remember being very sleepy, hardly able to keep my eyes open. Next, they sat me up on the edge of the bed and did a spinal tap. The next thing I remember was them saying to open my eyes, wake up…and I could not. Everything went black. My very next memory was being woke up with a jolt of my whole body, feeling severe agitation, I could not lay flat, hold still, was thrashing my whole body, limbs. The nurses were telling me to lie flat as I just had a spinal tap, I was getting more and more wound up, did not know what was going on. A nurse told me they gave me Narcan (reverses opiates) as I was getting too sleepy. I had become unresponsive during the spinal tap and they did not know why. My organs were shutting down and had not metabolized the pain medicine. The Narcan put me into immediate opiate withdrawal. Fortunately, they gave me small amounts of Dilaudid until I was no longer thrashing. That experience was hell, and I never want to go there again!

I ended up spending 5 days in ICU, battled low blood pressure, fluid overload, GI bleeding, and was flying high as a kite with the massive steroids I was being given. I was an emotional wreck, wish that my cell phone would have been taken away from me as I did not realize it until later that I was sending blow-by-blow texts to my friends, driving them nuts and not remembering what I said or sent. Luckily I have forgiving, understanding friends. I was unable to sleep in the hospital, especially ICU, would sit up crying, writing profusely, poems, songs. It was mind-boggling what I just had went through.

The staff at Sutter Hospital in Santa Rosa, CA were incredible. Doctors and nurses kept me informed of what was going on. I have never been at a better hospital.

I was at the hospital 11 days total. They placed a tunneled catheter, central line and I was discharged with nurse visits and home IV antibiotics.

I found out that this was due to enterococcus in my urinary tract. I had no symptoms of a UTI. (Sepsis and Urinary Tract Infection) I had my blood drawn 2 days before I got sick and everything was perfect, including my WBCs. I had a bladder infection exactly 2 weeks before this, cultured as e-coli, treated with appropriate antibiotic and went away. I asked infection control doctor while I was in ICU, how do I know what to prevent if I don’t know what caused this? He said, go live your life as you were. This could be a fluke or from chronic prednisone use. (Sepsis and Impaired Immune System) Don’t take your temperature three times a day and don’t become your illness. His words stick in my head.

When I got home, I was so weak, had to rest constantly between any activities. I really had to pace myself. I could not stand long enough to finish my shower, I would do part of it and go wrap in a blanket and sit on my bed to dry off. Gradually, I have got my strength back, most of it. One thing I found out is, to don’t try to get back to normal routines, activities too fast. I got weak so fast being sick, muscle wasting. Before I got sick, I walked with my dog 1-2 hrs/day, throwing the ball the whole time. I found out that I don’t have the core strength I had before as well, have started doing water exercise and that is helping.

Emotionally, I am finally settling down. I had severe insomnia coming home as well, also nightmares waking up in ICU with monitors, hearing ventilators, while in my own bed. (Sepsis and Post-Sepsis Syndrome) What has helped me immensely is sleeping with my dog in my bed, is very comforting and I do a ton of journaling. I listen to peaceful music and also am seeing a psychotherapist. This is all helping a lot. The ICU nightmares are getting less frequent but I am still very frightened when I have to go back into a hospital and lie on a gurney for any reason, my mind starts taking me right back to ICU. My memory is terrible since sepsis. I still have to take naps on the afternoon as I get bone-tired.

It has helped me a lot reading the stories of others on this site. It helps to have some place to get this off my chest. Maybe what I say will be helpful to someone else out there. I am so eternally grateful that I got a second chance, that many others don’t get. I realize that I came through sepsis relatively unscathed. I think that having had blood clots in the past and being on Coumadin, may have prevented me from having the complications that cause so many to have amputations, just a thought. I do have a very peaceful feeling inside that I never had before. Before sepsis, I was uncertain about death, not fearful, just did not know what it was all about. After sepsis, I feel inner peace, like all is going to be ok, no matter how long I live, just make the most of the time I have left.

December 1, 2016 update:

It took me a full year to finally get most of my strength back from Sepsis Round 1. I had returned to lap swimming, I was happy, life was good…until waking up with chills, full body tremors the evening of 11-12-16, 2 days after my birthday. I bundled up, went back to bed. The next day, I went to a birthday party for me but I had a headache, ate little, laid on the couch and left early. At that point, I thought..maybe I had a reaction from the flu shot I had a few days before…or a UTI..but I had not symptoms of a UTI.

11-14-16 I woke up, headache, severe nausea, was so weak I could hardly walk, was taken by a friend to the ER, where fortunately the doctor took me seriously when I relayed my history of lupus, septic shock from urosepsis. Many diagnostic tests were done, I was given IV antibiotics, lots of IV fluids, oxygen as my O2 sat was very low. Diagnosed with sepsis from UTI again from enterobacter (same bug as before).

It took several days for my headache to go away and to feel some better.I was in the hospital for 5 days this time. I am so fortunate to be alive…given yet another chance…that many never get…and glad I paid attention to my symptoms. I am left with a very poor memory and am very weak,have little activity tolerance, am cold all the time, but am so grateful to be here…life is SO sweet and SO fleeting.