Lisa experienced a number of antibiotic resistant infections– including lung and surgical site infections.
I’m 39 years old but I’ve been ill all my life, having had a number of surgical devices inserted into my body which has unfortunately attracted bacteria to collect around these devices and cause infection. I have also experienced severe pneumonia on several occasions.
My story began when I was born prematurely with my oesophagus attached to my lungs. My doctor fortunately recognised it and saved my life by operating on me immediately. After I had a colon transplant at age 2, where they took a piece of my bowel to make me a ‘oesophagus’, I could eat food but I was constantly getting food stuck and as I got older the colon in my chest kept growing as it would do, which meant I had a kink in it. This got so bad that I needed a peg tube put in again but this time for life, at age 22. Even though I can’t eat food, as it would get stuck, I can still drink- but only slowly. A PEG tube is a feeding tube which passes through the abdominal wall into the stomach so that nutritional feed, water and medication can be given without swallowing.
When I was 4 years old, I also experienced a condition called ‘fused double scoliosis’ in my spine so it’s now bent in an ‘S’ shape. I had many operations on my spine, including insertion of metal rods which were meant to try and straighten my spine, but mostly to prevent further curving of my spine. Unfortunately, the rods became infected and they kept having to do surgery to trim the infection away or inject steroids in my back to fight the infection. That didn’t work either, so then after a few years the doctors took the decision to remove the rods from my body. I’m on morphine patches to deal with the constant pain. This also led to type 2 lung failure, called Chronic Restrictive Lung Disease where my left lung is squashed by my spine, but my total lung capacity is only 20% in total. My spine compresses my left lung, so I use a special machine to help me breathe at night and expel the carbon dioxide. I discovered this lung disease at age 18 when I first got pneumonia and have experienced a number of bouts of pneumonia over the years since then.
My last bout of pneumonia caused by resistant bacteria was in Nov 2019 when I ended up in hospital. I was given intravenous antibiotics for 2 days then two oral antibiotics for another 5 days. Once my blood test levels had returned to normal, I was discharged home with advice to return if I got any worse. I think I now have problems with resistant bacterial infection in both my PEG tube and also from these recurring lung infections.
When I first got ill with pneumonia, I then realised that antibiotics cannot fix everything. Wheezing in my lungs doesn’t always mean I have infection – sometimes its inflammation only. I know to wait till there is an infection confirmed before I consider taking antibiotics, because I need to avoid further antibiotic resistance developing. I never take antibiotics as a precaution – because I know they won’t make any difference at that stage, and I may need them another time… and that’s when I really need the antibiotics to work!
What impact did your experience have on you?
Experiencing recurring infections where I end up in hospital or unwell have proved to be another ‘knock’ to me in my life – as it affects me being able to do my volunteer job. I may be disabled and not able to do paid employment, but losing that opportunity to give back, and to undertake the volunteering role which gives my life so much purpose and meaning can be extremely difficult to deal with. When illness and infection remove that, it has a major impact on all aspects of my life. I become more anxious and more depressed when this happens – as it’s another reminder that I’m not well and am disabled.
My mum has to take time off work to care for me when unwell, so there’s practical considerations for them as well as me. My niece and nephews see me struggle at times and worry whenever I’m admitted to hospital due to bacterial infection. They feel guilty if they think they have passed any kind of infection onto me. So, all generations of my family are impacted by the resistant bacterial infections I experience.
But I remain determined not to let either bacterial infection resistant to antibiotics, or other conditions define me or prevent me from making a useful contribution to society and to life. I now tutor self-management for chronic health conditions for the Expert Patients Programme which is for Manchester Foundation Trust. I volunteer for Manchester Health Care Commission on the Public and Patients Advisory Committee. Recently I’ve joined the student nurses programme committee which involves different roles at Manchester University.
Based on my own personal experiences with infection, I am now considering whether I could meet the student nurses here at Manchester University for educational input to their curriculum on antibiotic resistance.