Ex-patient Laura Russell shares her personal experience of TB.
Remember, remember the 5th of November…. I’ll never forget the date I was told I was suspected of having tuberculosis. To the noise of fireworks exploding in the damp, dark dusk I walked home from hospital in a state of bewilderment and shock. How could I have TB, that Victorian disease which killed off Nicole Kidman in Moulin Rouge? No one in the UK got it anymore. Plus, I felt fine. OK, so I’d had a bit of a cough on and off for almost 10 months, but I was fit and healthy.
There’s never a good time to find out you have pulmonary TB, but for my boyfriend and me the timing was perfectly awful. All year we’d been planning our “epic-six-month-adventure-around-the-world trip”. With ten days to go before our leaving date we’d handed in our notice at work, put our flat up for rent and bought the flights. And yet, here I was, being told I was potentially highly infectious and shouldn’t even leave my flat, let alone the country!
The coughing had started in February, after a spell of feeling under the weather. My local GP told me to take it easy and get back in touch if it hadn’t stopped by Easter. When I went back, the cough was dismissed as a lingering virus. I was seen by a total of six doctors over nine months and each one dismissed the cough as a minor irritant.
In hindsight, I think the doctors all saw a healthy, white, 29 year old female and, as I didn’t fit any of the stereotypes, a diagnosis of TB never crossed their minds. As my leaving date drew closer, I became increasingly frustrated that the cough was worsening. Finally after visiting an asthma clinic, I was referred for a chest x-ray.
I fully expected the x-ray to come back clear. But after checking my x-ray, I was immediately referred to the on-site TB clinic, where tests showed I definitely had TB! That evening, instead of leaving drinks with friends, I was reeling once again – I really did have tuberculosis. A strict regime of nine pills a day began, alongside blood tests to check my cell count and liver function.
The next three weeks were easily the most stressful time of my life. I was still infectious and didn’t want to risk infecting anyone else so I stayed quarantined at home without a job. I wasn’t sure what I was more worried about – being homeless, being unemployed, travel worries, having TB or the potential side effects of the treatment.
The TB team were immensely reassuring and gave me clear information from the outset. I was shocked to find that TB is still one of the biggest killers world-wide and that diagnoses of new cases in London has been increasing steadily in recent years.
After three weeks of medication, my consultant told me I was responding well to treatment. I was no longer infectious and, as long as I maintained the regime of pills religiously and had regular check-ups, I was free to go abroad. So off we went, backpacks weighed down with my medication. We had an amazing adventure, climbing volcanoes in New Zealand, scaling peaks in Patagonia, visiting Machu Picchu at dawn and salsa dancing in Colombia.
I thought about the TB every day but, while I sometimes felt a little nauseous after my medication and had joint pains in the first few months, it didn’t impede me in anything I wanted to do. The coughing stopped after two months and soon the only way of telling I was recovering from TB was the medication I took without fail every morning.
Back in the UK another chest x-ray showed my lung had partly healed, although I still have some scarring that may never fully disappear. Now I’ve stopped medication, feel well and have been training for a 10km race to give myself a fitness goal.
I’d advise anyone who finds out they have TB – remember there is a cure, you just need to be patient, follow medical advice, take the medication daily and know that it doesn’t have to ruin your life.