This year, the theme of World TB Day on March 24th is “Reach the 3 million”. Advocates, researchers, experts, and communities around the world are rallying around a call to reach the 3 million people who each year contract TB but do not receive the care and support they need. In the run up to World TB Day, we will be posting a different blog each day to profile the disease from a variety of perspectives. Today our post comes from Amy McConville; Amy is a TB patient/advocate from the UK who works with the TB Action Group (TBAG). This is her TB story:
“I want to see TB banished to the history books”
This year, the theme of World TB Day on March 24th is “Reach the 3 million”. Advocates, researchers, experts, and communities around the world are rallying around a call to reach the 3 million people who each year contract TB but do not receive the care and support they need. In the run up to World TB Day, we will be posting a different blog each day to profile the disease from a variety of perspectives. Today our post comes from Amy McConville; Amy is a TB patient/advocate from the UK who works with the TB Action Group (TBAG). This is her TB story:
Over the course of several months my GP diagnosed me with a series of chest infections. The antibiotics made no difference. As my cough worsened my appetite faded away. After nearly nine months I got an appointment at the chest clinic and by that point, I only weighed five and a half stone.
The cough had developed into an awful pain in my left lung. I took to my bed and stayed there for weeks. The doctors couldn’t seem to diagnose me and I was scared that I might never recover.
It felt like my body was giving up on me, I was incredibly weak, I couldn’t eat, even my favourite food made me feel nauseous. TB is a wasting disease; it consumes you from the inside. I’d been ill for over nine months, I couldn’t remember the last time I’d had a proper meal.
Finally, the diagnosis arrived. I had active pulmonary TB.
TB drugs are daunting; I knew about the potential side-effects and they scared me, drugs are supposed to make you better, not make you ill. So I didn’t take them. A week passed then two, then three. I knew I should have taken them but I didn’t. Finally, I spoke to a TB nurse. She seemed to understand straight away, and said that she’d help me through any side-effects. So, a month after finally getting my diagnosis, I started taking the pills.
Although, at the time, that seemed like a huge first step, it was barely the start. By the time I swallowed the first set of pills my left lung had collapsed. I found out a couple of weeks later and was devastated. A vital part of me had literally died.
I was lucky that I didn’t experience the worst side-effects from the drugs, but that didn’t mean I got off lightly. I had searing joint pain. I used to wake up in the middle of the night with the feeling that my joints were on fire. My hair was falling out and I was put on pain medication and steroids. I couldn’t even guess how many pills I took during that first phase of treatment.
After battling on with the treatment, I was finally given the all clear at the end of that year. I was looking forward to putting the TB behind me and catching up on lost time at university.
But at the start of February the following year, just three months after getting the all clear, I relapsed. My Easter was spent in hospital, in my own room, alone. Everyone who entered had to wear a mask because the hospital was worried I might infect other people. TB is often a very lonely disease, and I have never felt so lonely as I did that Easter.
The first round of my TB treatment had not been successful at all. My collapsed lung had provided the perfect place for the bacteria to hide and when I’d stopped taking the drugs, it came back fast.
The doctors said that my left lung had become a “reservoir of infection” and was attracting other bugs that were making me ill. It was, according to the specialist, irreparably damaged and the only option was to remove it.
But before I could get to have the operation, there was another complication. I had a shadow on my right lung. I’d stopped treatment a couple of months before the operation, and the TB had bounced back again.
I can’t describe the shock. I was horrified. TB had already claimed one lung and was infecting the other. It was using my own body against me to make me ill. It was stealing away my quality of life.
The hospital didn’t have a plan for me. Nobody seemed sure what to do next. I was sick, my education was on hold and I didn’t know if I’d be able to finish my degree. As an intermittent student, I was ineligible for benefits but TB drugs hadn’t yet been made free for patients so I had to pay for them. I plunged into debt.
They added second line drugs into my treatment. May came around; the doctors decided it was the right time to have the operation.
Amy addressing a meeting of the All Party Parliamentary Group on TB
And all of a sudden, things got easier. I started putting on weight, I was getting fewer infections, I was still on treatment but I was finally getting better and my life was back on track. But it wasn’t quite that easy. Two years after completing the last round of TB treatment, I was diagnosed with depression and anxiety.
Academically I was struggling, I’d got support with my financial problems but it was still difficult. Although my health was under control, my life was not.
My GP said my depression was due to the “severity and prolonged nature of the illness”, but I think it was because I blamed myself for what happened. A doctor had once told a whole ward that it was my own fault that I was in hospital. It was a throw-away comment, but it stuck in my head and I felt so guilty.
Still, I managed to graduate, sorted out my finances and saw a counsellor. Now I do whatever I can to let people know about this disease and the effects it can have.
Nine years ago TB turned my life upside down and I’m still putting it back together. I’ll be carrying the consequences for the rest of my life and I’m one of the lucky ones; I survived. Whatever we can do to stop this disease, we have to do it. No one should have to go through what I went through.
The long delay that Amy experienced between the onset of symptoms and her eventual diagnosis are quite common. The median delay between patients experiencing symptoms and diagnosis with TB was 74 days in 2012, and 43% were diagnosed more than 90 days after the onset of symptoms. People who have active pulmonary TB and are left untreated remain infectious. Reducing the diagnostic delay is vital to reducing the number of cases of the disease.
Amy’s story also exemplifies the need for TB to be treated as seriously here in the UK as anywhere in the world. Improving doctors’ and nurses’ ability to find and treat TB at first glance is essential for ensuring that no one else has to go through a struggle like Amy.