Recovering from TB to run a marathon

Post-marathon drinks with Sheila Thackwray, mother of Seonai Gordon.

I was running when I first noticed something wrong. A week after moving to London’s East End, I had gone out jogging to explore the local area. Ten minutes later though, I had to slow down and then walked back along Regent’s Canal. 

Days later during a joint house warming and birthday party for my girlfriend, I faded again. I should have been celebrating myself, having completed my basic psychiatry training weeks before. However, feeling increasingly tired, I excused myself and retired to bed early, only to be kept awake by my new onset cough and the party underneath our mezzanine bedroom.

The next day we left by car to visit my girlfriend's native Netherlands. My cough continued while visiting friends in Kent and Belgium. I had a brief run of night sweats but these settled and I expected my flu had passed. I wasn’t really in the mood for an outdoor three-day festival though I tried to keep going and stocked up on lozenges to stop this relentless cough.

However at the festival I had now gone off alcohol and food. The fact that everyone spoke English just made me more self-conscious. While it rained all weekend and the site flooded, my cough continued and for the next three nights I sought refuge in the barn-sized cinema tent. There was a medical tent too and as I passed each day, I considered checking in. Previously I had been a volunteer doctor at the Glastonbury and Reading festivals, though I doubted much could be done for an annoying cough.

Assessment

On returning to London, I explained to my GP that my sides were sore from coughing and I’d lost weight like never before.  After his examination, I was curiously surprised to hear there were sounds half-way down my left chest. I was reassured to leave with a prescription for the antibiotic, erythromycin and thought I’d soon be better. Over the next few days my cough settled, I could eat again and my plans to see my Dad and brother in Australia next week seemed on track. 

The night before my flight, I was at the theatre and felt a familiar need to suppress a cough. However, this one wouldn’t go quietly and I excused myself to run up the stairs. I made it through the theatre doors before releasing a cough that left fresh blood in my hands. I washed up in the empty bathroom and looked in the mirror to check if I was unwell. I wasn’t sure but not wanting to cause alarm, I returned after the interval to see the end of the play. On our way home, I then explained to my girlfriend that I better visit A&E.    

When I described the blood, my cough and the noise that the GP heard in my chest last week, the nurse who took my observations suggested that a chest X-ray would be arranged. I was then checked over by a young doctor who seemed more thorough with his physical examination than I might have been. As he heard no unusual sounds in my chest and recognising each other as fellow professional, white men, we mutually agreed that all would be OK and an X-ray wasn’t needed. When I mentioned my planned flight to Australia, he seemed more excited than I was and offered to write a medical note. I felt that was unnecessary, but as the erythromycin had finished, he gave me a week’s course of penicillin V.

When I reached Australia though, I was still coughing and with my Dad being a retired radiologist, a chest X-ray was soon arranged. On returning from the radiology department, I received a phone call to say that an appointment had been made for me, for the following day at the chest clinic. There, I finally saw the reason for my three-week cough, a 10p-sized cavity in the centre of my left lung, right where the GP had heard the coarse sounds.  

Diagnosis and Treatment

By now, I was intermittently bringing up sputum. Specimens were sent for microbiology testing and I started another antibiotic. However, days later, that changed again when the microscopy results came back positive for acid fast bacilli, the tell-tale sign that meant tuberculosis - TB. 

I had only planned to stay for ten days but now I was grounded and house bound until further notice. I started taking four different antibiotics, which after two weeks was reduced to three when my sputum cultures showed that my TB strain wasn’t antibiotic resistant. From medical school days, the combination of rifampicin, isoniazid and pyrazinamide was familiar to me by its grim acronym, RIP. However, since the 1970s, this standard triple therapy taken as a daily course over six months, has been the mainstay of successful treatment for TB. 

Australia in the springtime was nice but I wasn’t prepared for having little to do. Along with the advice about the importance of compliance and avoiding alcohol, I’d been warned about the medication’s side effects of orange urine (due to rifampicin’s pigment) and fatigue. I certainly felt tired but wasn’t sure if it was the medication, TB or the the long phone calls to explain the situation to my girlfriend. Six weeks later, I was allowed to stop the pyrazinamide and as I was no longer considered infectious, I returned to London with four more months of treatment to complete.

While I had been away, my girlfriend had been screened and informed the members of her family that I met in the Netherlands of their own potential risk. Fortunately, she had no signs of illness herself when seen at the nearby London Chest Hospital, where I was now booked into for follow-up care. There I met the respiratory physician who was undertaking a critical incident review into my care in A&E. That was reassuring because of the inconvenience caused by the advice I was given though I felt sure it was an honest mistake. My untypical profile for someone with TB and the circumstances of me flying abroad the next day had been an unfortunate combination of events.

I was keen to know about the source of my infection as previously I didn’t know anyone who had TB. While TB is more prevalent among migrant communities, I hadn’t been in the East End long enough to have contracted it there. I wondered if it came from my work as a psychiatrist in London during the previous two years. Certainly health workers are at increased risk but that meant it could have been anytime since I started medical school 15 years earlier in another TB hot spot, Leicester. Although I had received the BCG vaccine when 13, I now knew all too well that it didn’t provide full individual immunity. Identifying the direct source of my infection was futile though I was later told that my TB strain matched those of other infected Londoners.

Recovery

Three years later on a Sunday morning in spring, Brighton’s first marathon went by my seafront window. After the elites there followed ever slower runners, joggers and then walkers who had yet to complete half the course. I admired their effort but thought, I couldn’t do that. Not because of TB, which I had recovered from, but as it was too damn long!  

Previously I had completed 10 kilometre races in my youth but the appeal wore off when my younger brother started beating me. I tried cross-country at senior school but similarly would lose interest and stroll back through the fields. At medical school and afterwards, I would run for half an hour to clear my head, though there was no interest in races, let alone investing in running shoes.

In early 2011, the Brighton based charity TB Alert asked for volunteers to run the next Brighton marathon on their behalf. I had been running longer distances to improve my fitness and thought I could do half the distance but didn’t think 26 miles would be possible within a few months. Yet it seemed the ideal opportunity to try and with two months to go, I ran my first half marathon in under two hours. My legs hurt afterwards but it was manageable and I felt more confident seeking donations to go twice the distance. 

As it was, having done a couple of 15 mile runs in the weeks before, I was reasonably prepared and finished the marathon in under 4 hours. While I was definitely wobbly during the last six miles in the midday heat, I was greatly assisted by the support of people cheering the name on my vest and who I wasn’t going to stop in front of. My legs were tired again though my greatest health risk came from not wearing sunscreen on the hottest day of the year. I also discovered why runners grease their nipples. 

Reflections

Having achieved something that I might not have done without my TB backstory, am I different? Am I even healthier? TB has likely reduced my lung capacity though fortunately, it hasn’t been noticeable. Through my training, I certainly have more stamina and while I don’t set targets, I do run comfortably for longer.  

In some ways TB has made me more determined as a person. During my treatment and while out of work, I realised I’d have to concentrate on my health and focus on things that I could achieve. Where previously I had been unsure about my career, I applied to resume my training in psychiatry and probably finished sooner than had I not been unwell.

My delayed diagnosis was inconvenient and the personal consequences were worse for being abroad. I fear for what may have happened to those who were close to me when I was infectious and wonder how the TB bug influenced my behaviour. 

In hindsight, the diagnosis for my symptoms of coughing, weight loss and tiredness seems obvious, but my lack of apparent risk factors appears to have distracted me and the first doctors I saw. The site of my TB cavity was also misleading, as while most pulmonary TB develops at the top of the lungs where oxygen concentrations are greatest, mine was at the top of my left lower lobe, which occurs in only 10% of presentations.

Even with my medical knowledge that coughing blood suggests either TB or cancer, in my mind I had ruled these out before I reached A&E. As my Australian physician explained, TB is the ‘great mimic’ that can resemble other conditions and often leads to wrong diagnosis and treatments with partial recoveries. That explained my own initial response to antibiotics, which likely treated coincidental secondary infections. However, had I not gone on to be diagnosed and adequately treated, I would have been vulnerable to relapses and developing antibiotic resistant TB.

I’m also aware that compared to most people with TB, I was fortunate. I received free health care, my TB strain wasn’t antibiotic resistant, nor did I have other complicating factors like HIV. Also relative to many who have chronic and debilitating TB, my diagnosis and treatment came early and improved my recovery. Fortunately, I wasn’t treating patients at the time and as far as I know, none of my close contacts contracted TB. I can only hope that’s the same for others I was in contact with then.  

In trying to come to terms with my illness, I was frustrated at how little I could say about it at the time. My diagnosis wasn’t something to share widely and after previous partial recoveries, I couldn’t be sure that I would recover as I have done. I therefore had to be selective in terms of who I told, which in itself was tricky to judge.

When considering how to tell my story and raise awareness, it was apparent that every TB story is different. For me, once my diagnosis was made, my recovery was straightforward. For others it can affect the stomach, bone, kidney or nervous systems and remain latent or prone to recurrences and without treatment can be fatal. That, along with the fear associated with TB’s reputation makes it a difficult message to explain, particularly without causing undue alarm. 

As a doctor, I’m continually aware of other people’s health. However, it was a disease from the past that was my first confrontation with my mortality but though TB, I learned that even a marathon wasn’t beyond me.     \

In memory of Seonai Gordon.

24 March is World TB day. For more details click here.

On 15 April 2012, I will be running the Brighton marathon again for TB Alert. Donations can be made here.


Updated 25 March for feature in Observer