13 Sep 2017
Written by Mary Millard
It’s Sepsis Awareness Month and I believe that we survivors need to speak out so more people can learn and recognise the symptoms of a killer that can affect anyone, no matter who they are.
Although sepsis and antibiotic resistance can cause and affect each other, in this case, my condition resulted from a bacteria I contracted, and I will now live with antibiotic-resistant Pseudomonas for the rest of my life.
Before being hospitalised due to an aortic aneurism, where an aorta in my heart blew up like a balloon, I had no idea that hospital infections even existed.
Even when I was admitted, the possibility of it didn’t even occur to me when I was told by the surgeon that I would need to undergo a routine operation to repair this genetic defect.
A day prior to my surgery, however, I experienced cardiac arrest due to a clot from a collapsed aortic valve. I flatlined and died for a minute and a half, and was placed on extracorporeal membrane oxygenation (ECMO), which is essentially a life support system where a machine helped my blood circulate. I was also placed on a ventilator and had an external pacemaker to help keep heart beating.
For six hours doctors ran test after test until one of them thought “could this be sepsis”?
Taken off the ECMO a few days later I had to undergo open heart surgery as the clinicians were afraid my aneurism would burst. I received an aortic graft and a new aortic valve.
I have no recollection of what happened next. On a cool Sunday morning, after nearly a month in the hospital recovering, my husband came to visit as he did every day. He was excited because I was going home soon.
He walked into my room to find me sitting in a chair unable to hold my head up. I was talking, but not making sense. He alerted a nurse who called for assistance, as she thought I was having a stroke. For six hours the neurological team ran test after test with no evidence of a stroke and one of the doctors finally thought “could this be sepsis”?
I was raced back to the ICU, as my organs started to fail, and given tobramycin, a powerful blanket antibiotic. Seventy-two hours later my cultures came back positive for Pseudomonas Aeruginosa.
Pseudomonas aeruginosa is virulent, gram negative, antibiotic-resistant bacterium, which was recently near the top of the WHO’s list of priority pathogens and is considered a “serious threat” by the CDC. It often lives on moist surfaces like soil, swimming pools, the skin and can very easily contaminate medical equipment in hospitals. It most often affects people who are immune compromised.
Every day my husband was told I was going to die, but for two weeks I hung in there. They decided to open up my sternum again and the surgeon scraped out the infection as well as cleaned out my chest cavity. A piece of my abdominal wall lining was taken and placed into the sternal area to help provide blood flow for healing.
Things have never been the same since. My family has had to adjust to “a new normal” of post-sepsis syndrome. After 20 extra days in the hospital I had to endure:
I still regularly suffer from post-sepsis syndrome with:
I was put on a very strong and toxic antibiotic called ciprofloxacin as it is the only oral medication that will currently help suppress the Pseudomonas bacteria.
Yes, I live with it forever now.
My doctor has told me the pseudomonas will win eventually, but until then, for me, it is imperative to do as much as I can to help others with my story.
Pseudomonas continues to build up with other bacteria into a sticky substance called biofilm, which attaches itself to anything in my body that is not DNA, such as my graft, valve, sternal wires and the micra pacemaker that was put in when my heart failed again recently. This biofilm makes it even harder for antibiotics to penetrate and take any effect, creating more risk of sepsis.
My own immune system attacks my muscles and this includes my heart muscles.
Yes, septic shock can cause heart failure.
Suspecting sepsis in cases like mine should be a first priority. There was a delay of six hours, when I went from mild symptoms to acute shock and near death, requiring more intensive and longer care. Side effects and post-sepsis syndrome may have also been avoided.
Sepsis is not always recognised, but it has some subtle symptoms you can keep an eye on and should contact a doctor/hospital immediately if suspected:
More info about sepsis and antibiotic resistance can be found at the Sepsis Alliance and UK Sepsis Trust sites.
To help raise awareness of sepsis and antibiotic resistance I push to get invited to every health seminar or conference I can to tell my story. I have been invited to speak at ID Week 2017 sponsored by the Infectious Diseases Society of America. My hope is to continue to spur research and funding to help find a solution to this growing problem.
My doctor has told me the Pseudomonas will win eventually, but until then, for me, it is imperative to do as much as I can to help others with my story.
Mary is a public speaker on sepsis and living with a chronic hospital infection. She lives in the United States and advocates for research and funding on superbugs. You can follow Mary on her blog, on LinkedIn or Twitter at @HAISurvivor
Congratulations to the winners of the Longitude Prize on AMR, Sysmex Astrego!
