The New Normal: Life with HAI

07 Feb 2019

By Mary Millard

As someone who lives with a chronic hospital-acquired infection (HAI), I am often asked if it has changed my life? I answer in short; yes very much so. People do not often understand when you acquire a HAI, your life is never the same again in many ways and not just health wise.

In 2014, I acquired an infection with the bacteria Pseudomonas aeruginosa during lifesaving open heart surgery for a large aortic aneurysm. Prior to the procedure I was healthy with no issues with cholesterol or with my bloodwork or blood pressure.

After the procedure, acute septic shock set in as a result of the bacterial infection. This required  my chest to be opened again to clean out infection residue as well as scraping my new aortic graft in an attempt to remove the buildup of a bacterial biofilm. I was not going home from the hospital for at least 30 more days and in the end,  I was there for 61.

The challenges when home

Once home, I required 30 days of intravenous antibiotic infusions to make sure the infection was suppressed. Following that, I was given an oral daily dose of the antibiotic ciprofloxacin. Six months after my discharge, the Pseudomonas became resistant to the ciprofloxacin and returned to my bloodstream. Doctors then raised the dose, which is now what I continue to take and I hope it continues to work.

My biggest challenge has been learning to walk and use my hands again, as two months in a hospital bed and septic shock had severely weakened my muscles. I also had to have a wound vacuum to treat the area where the infection started. This required my husband to learn how to use the machine as well as learn about packing a wound for healing afterwards. Our home looked like a small hospital with stacks of supplies everywhere. After regaining some strength, I started cardio rehabilitation..

To this day I have a numb left foot and constant tingling in my fingers.

Ongoing doctors’ visits

Being on a high dose of antibiotics for life has its own problems. The ciprofloxacin kills all good bacteria in your system, but is not effective against all bad bacteria. I have been hospitalised five times after the original hospitalisation for infections that my system cannot kill on its own. Yet the hospitalisations seem few compared to the doctor visits. There are cardiologists, electrophysiologists, neurologists, orthopedists, radiologists and an infectious disease specialist I see on a regular basis. Sometimes up to four appointments a month. Depending on what problem presents itself due to the infection or the antibiotics, I may see more. My care is reactionary due to there being no protocol for a bacterial endocarditis and graft biofilm.

Piling costs

If you live with an HAI for life, be prepared to face some financial hardship. In the United States we do not have a national healthcare system and if you are fortunate enough to have insurance it still does not pay for everything and there are leftover costs that the patient has to cover. In the beginning, my husband used his paid time off to be with me in the hospital. Repeatedly when things took a bad turn he was told many times it was my last day to live. He left his job as he was not eligible for family leave. It took him a few years to find another and with added hospital bills we went through our entire savings and retirement funds. Other out of pocket costs after the initial hospitalisation add up; such as fuel back and forth to doctors’ visits, costs of medication (unlike on the NHS in the UK these costs vary significantly), as well as the cost of buying different types of probiotics to combat the antibiotics’ effects on your digestive system. Small things add up. Every time I go to the doctor or am hospitalised we pay for parking, not to mention more car use and the additional maintenance we need on the car due to wear and tear.

My husband: The caregiver

A long hospital stay, and being listed as in a ‘critical’ condition 95% of that time, can be very stressful on your family, but also specifically on your caregiver. Months in hospital and surviving septic shock deprives a person of being able to do their own daily care and this is where caregivers must step in. My husband had to play this role for me. He learned to sterilise ports and perform flushes as well as hooking medicine onto a pump. My care required regular bandage changes and wound cleaning. He performed these duties but it was not easy for him after almost losing me and the stress of our finances. People from our church and family also helped with home cleaning, cooking meals, and caring for me. As I could not climb in and out of bed and slept on a donated lift chair, my husband was up many times in the night to check on me. He drove me to appointments and physical therapy. I could see he was also struggling and we realised it would be a long road.

Post Sepsis Syndrome

Post sepsis syndrome or PSS is real and can wear on a patient as well as all those in their life. I tire much faster than I used to and my numb foot causes pain in my leg after walking a short distance.

For a year I had nightmares about my hospital stay. My loved ones had to deal with me not being involved in as many activities as I used to. When we go hiking in mountains nearby, I sit and wait for their return.

Believe me I am grateful to be here, but at times I want to close my eyes and upon opening them – see my old life again. Living the “new normal” is not as easy as you may think.

Mary lives in the United States and advocates for research and funding on antibiotic resistance. You can follow Mary on her blog, on LinkedIn or Twitter at @HAISurvivor