24 Mar 2021
Tuberculosis - the lived experience
The Victorian Tuberculosis Program (VTP) is the state-wide provider of public health services relating to tuberculosis (TB). The core work of the VTP is TB case management for those affected by active TB disease. The case management partners with people to minimise barriers and disruption to lengthy treatment, in turn optimising outcomes for them and the public. On this World TB Day, we are honoured to share Marie’s experience. Marie finished TB treatment almost four years ago, this is the story of her journey with TB, told in her own words.
Life went upside down
My mum was a midwife, a nurse. She was devastated when I told her that I got TB. She said to me, ‘You’re going to become skinny my daughter with TB’. I said, ‘Mum, I’m already this way. I lost a lot of weight’. She replied, ‘Oh, it’s a sickness, a real sickness that you’ve got now’.
I started my tuberculosis (TB) journey in late 2015 when my dermatologist raised a concern about lymph nodes in my neck, under my arm, and my groin. I had recognised that the lymph nodes were becoming very big and I often felt sick and tired. Sometimes I couldn’t eat or drink. I just felt sick.
Tests from the dermatologist, and later with my GP, investigated cancer. It was a very scary time for my daughter and me.
X-rays, CT scans, and eventually a biopsy; lots of waiting for results. Then the doctors removed some of the lymph nodes. Again we waited for the results. There was relief that it was not cancer.
I felt ill, I kept losing weight, but I just couldn’t eat or drink even though I tried. My daughter could see that something was wrong, but I tried to be strong. I kept going to work.
Who is around you
It was a Saturday, I went to work for my shift. I work in an aged care facility, and I went to work not feeling well, but needing to keep going. I fainted, at the nurse’s station. Luckily, the nurse took care of me until the ambulance arrived. This was my first hospital admission during which they told me that I had a partial bowel obstruction. I spent more time in the hospital than at home for the next two months on IV fluids, trying different options for the obstruction, until I was told that I had TB. The doctors explained that TB was affecting my bowel and abdomen. They referred me to the specialist infectious diseases team at Monash Health.
Treatment was complicated because I couldn’t digest the TB medications in my stomach. It was decided that a PICC line, a long thin flexible tube, should be inserted into my arm to deliver the medicines directly into my bloodstream. I also had to have surgery to repair my bowel.
Waiting until I was stronger (four months after I fainted), the surgeon removed part of my bowel where the TB had formed scars and the obstruction. I was excited to go home after this. I know my mum and my daughter was worried and missing me. My mum lives overseas cared for by my brothers. She asked ‘who is around you, my daughter?’ I replied, ‘My daughter and I’m very proud of her’. She’s been a very strong girl. It’s just the two of us after a tough separation and she had to grow up fast looking after everything at home whilst I was sick, in and out of the hospital. Once I got home we thought life would be back to normal.
Unfortunately, 24 hours later I was back at the hospital. Scans, IV fluids, TB treatment through a new PICC line, and pain relief because my bowel wasn’t recovering, and I still had trouble digesting anything I ate. I kept vomiting. Down to 47 kilograms, I was the skinny person that my mum described, and receiving nutritional supplements through the PICC line 16 hours a day so that my body could absorb them. This time I was not allowed to go home.
Finding strength in gratitude
Days, weeks, and months kept going as usual with different tests. It was sad to look at other people and patients eating. Dietitians kept coming to see me, it wasn’t easy. I was so weak that my daughter would have to put me in a wheelchair to move, to go to the bathroom, to go outside. Sometimes I got frustrated with my life because of no improvement.
I was grateful for my daughter and to the people of the Victorian Tuberculosis Program who supported her because she had to finish her growing up quickly. We had no money coming in, she stopped studying, and started paying bills and managing all the home stuff. She travelled on most days to see me. It was hard and lonely for us both at times.
The doctors worked together trying different options, but eventually, we agreed that I had to have another surgery. I was scared but hopeful. They used a little balloon to open the entry into my stomach.
After six more weeks in the hospital, I was able to go home. One more brief visit to Monash Health as an inpatient and I was finally on the mend. It’s lovely to eat like a normal human being!
TB did affect my life; and my daughter’s life. Like my mum said, it’s a real sickness. Luckily with the support of my daughter, the team at Monash Health and the Victorian Tuberculosis Program I’ve been able to return to work and my home where I enjoy the garden, cooking, and time with my very grown-up daughter.
I finished my TB treatment as an outpatient. The Victorian Tuberculosis Program helping me to stay on track. TB knocked me around, and I know everyone’s experience is different because TB usually affects the lungs, but every day things have gotten better. It’s been five years since life went upside down for a year.
I finished my TB treatment in 2017 and had my last review in November 2018. I am weathering the storm that is COVID-19 and all of its reminders about another time of isolation, testing close contacts, and mask-wearing. Persist and get the right treatment.
Whilst we might consider TB to be history, the truth is that it affects lives. It is estimated that one in four people in the world has the infection that causes TB. Some of them are Australians.
We have been honoured to work with Marie and thank her for the courage shown in sharing her story.
Marie Ricaud, Joseph Musemburi, and Krista Watts