- Correspondence to: M Burden
- Accepted 29 August 2012
I was 28 years old and newly married when I was diagnosed with pulmonary tuberculosis (TB). I had recently started a new job as an infection control nurse, and the irony of this was not lost on me or those around me. Ten months previously I had returned to Devon having spent six months working with my husband, Tom, in a rural South African hospital where drug resistant and sensitive TB were rife. With minimal hospital resources, we worked everyday without personal protective equipment. Several nurses there developed TB; some died.
Having had a persistent cough and mild breathlessness for about a month, I went to see my GP. I saw a locum who diagnosed a chest infection with exacerbation of my asthma. I told him this did not feel like asthma: my peak flow was normal and I had no expiratory wheeze. However, I provided a sputum sample for culture and sensitivity testing and took the prescribed amoxicillin.
My sputum grew a penicillin resistant Staphylococcus aureus, so my antibiotic was changed to erythromycin. The symptoms persisted. At this point, I could not walk up two flights of stairs without becoming breathless, and I joined our local gym in an attempt to improve my fitness.
After two weeks of antibiotics, continual coughing, and a negative sputum sample, I voiced the possibility of TB to my GP. However, asthma remained the working diagnosis and I left the surgery with a course of prednisolone. A chest x ray was to be considered if there was no improvement.
Disbelief and guilt
My husband asked me if he could talk to his consultant, respiratory physician Hugh Bakere, and I agreed. After an informal chat, Dr Bakere saw me in clinic. My chest x ray appeared normal. He mentioned the possibility of bronchiectasis and the need to rule out TB, and said he didn’t think it was cancer. Over the following weekend I coughed up the usual thick green sputum and diligently dispatched more samples to microbiology. On the Wednesday I received a phone request to see Dr Bakere immediately. The sputum samples had tested positive for acid fast bacilli. All this didn’t really sink in . . . “I can’t have TB, my chest x ray was normal—was this a lab error?”
The following day, having been signed off work, I had a formal respiratory clinic appointment. We discussed reasons for Quantiferon and HIV testing, baseline blood tests, treatment options, and the importance of compliance and prognosis.
So, I had TB. A part of me was excited at having an interesting infection. A greater part was embarrassed at being an infection control nurse with TB. The over-riding feeling was guilt. I had a deep concern that I could have potentially infected friends, family, colleagues, and patients. Compiling a contact screening list only worsened this feeling.
Part of me was disbelieving—I felt relatively well; it couldn’t be right. I was apprehensive about treatment, the side effects, and prognosis after treatment. There was also a part of me that felt bitter that I hadn’t been listened to. This passed after I realised how quickly I was diagnosed in the grand scheme of things, but I sometimes wonder what could have happened.
Overriding all of this was stigma. I was infectious. I was to be confined to my house, unable to socialise. I had to make phone calls and explain to people why I could not see them, or why they had to be screened.
The psychological and emotional effects of TB affected me. People’s perceptions of TB came across strongly. People I hadn’t seen while coughing said, “I’ve had a cough for ages, maybe I’ve got it.” People tried to hide their concerns with humour: “Will I give it to my kids?” “Don’t come too close,” “Can I still get it?” None of these was funny to me. Tom continually provided comfort by rationalising the stigma and guilt: did I feel annoyed or angry with the person who “gave me” TB? No, so why should anyone else? It was logical, but sadly it didn’t help.
And then there was the isolation. The first two weeks after diagnosis I spent at home without visitors or visits to public places. I took isolation particularly seriously. I was determined not to give anyone else TB and thought of the public’s reaction to an infection control nurse spreading TB around our small community.
I was very low, frustrated, and overwhelmingly lonely. I had only just started my new job and already missed the companionship and the office banter. These feelings were made worse by the complicated treatment and associated side effects. I felt extremely nauseous and tired. My joints ached and a tingling sensation developed in my hands. The consequences of the medication made me feel so much worse than the TB itself did, and I can now understand why treatment compliance is so difficult and the importance of understanding why medication has to be taken. I had always struggled to swallow tablets, so the sheer number I had to take proved difficult at the beginning. As a healthcare professional I now have a great deal more empathy for people taking multiple medications.
My isolation worsened my guilt. The contact tracing programme began for my friends and family, who took it in their stride, telling me not to worry, but I did. Blood tests for children seemed cruel, with some of them too young to understand; x ray radiation to adults concerned me. Others were self employed and could have lost earnings while attending appointments, and all because of my desire to experience healthcare in a developing country.
Tom was a great support, and appointments with the respiratory team soon made me more positive. I was also fortunate to be working within the infection control team, who provided a huge amount of support. Regular contact from my GP added to the support. On the advice of the TB nurses, I researched several organisations (see resources box) to gain a deeper understanding of TB. Reading other peoples’ stories was helpful, and I started to keep a diary, which, in part, motivated me to write this article.
Now treatment is complete I am back at work full time—my manager and colleagues have been instrumental in my graduated return to work. The medication and side effects are no more, and I can enjoy food again. I have regained weight, have no cough, and my stamina has increased. My family and friends have all been screened with encouraging results. The huge worry and guilt regarding infecting others has gone. Did this contribute to my feeling better?
My patient journey has shown me that TB is not just a medical disease—so many emotional and social factors interplay, making it paramount that a TB patient gets appropriate care and support for these issues as well as medical treatment.
A doctor’s perspective
Mel presented to me through a slightly unusual route; her husband, a junior doctor, approached me with his concerns about her. I met Mel with her husband in my office. Mel had had a productive cough for seven weeks, had occasional night sweats, and felt generally lethargic. Her weight was stable. She was worried about tuberculosis as she had returned from working in a rural hospital with TB patients in South Africa, six months earlier. Mel had a history of asthma, normally well controlled, but her symptoms were different and more prolonged than those she had experienced with previous exacerbations of asthma.
I felt on initial assessment that pulmonary tuberculosis was a real possibility, along with perhaps bronchiectasis, and ordered a chest radiograph and three sets of sputum for microscopy culture and sensitivity analysis, examination for acid fast bacilli, and TB culture. The chest radiograph was clear but two sputum samples were acid fast bacilli positive, and Mycobacterium tuberculosis (fully sensitive) was later cultured. I was slightly surprised by the clear chest radiograph, but given her history and two confirmed sputum samples I was fairly happy with the diagnosis. A positive Quantiferon test result provided further support. Endoscopy of the ear, nose, and throat showed no evidence of oropharangeal TB. I considered computed tomography of the thorax, which I expect would have shown a focus of disease, but decided against it as I did not want to expose this young woman to the associated radiation dose.
Immediately after the positive sputum result, I started Mel on standard pulmonary mycobacterium TB therapy. This is six months of isoniazid and rifampicin supplemented in the first two months with pyrazinamide and ethambutol. I also gave her pyridoxine as prophylaxis against isoniazid induced neuropathy. We advised her to remain isolated at home avoiding new contacts for two weeks as a standard precaution. We were more concerned about this than usual as South Africa is an area with an increased incidence of multidrug resistant TB. Her case was notified and contact traced in the usual way. She has successfully completed her treatment.
The case highlights several points. Firstly, it is important to consider the diagnosis; key here was her travel and occupational history. As a respiratory physician in south west England, I am working in an area with a low incidence of TB (5.1 cases/100 000 in 2010) and see only a smattering of TB in the local population. Mel, however, was returning from a high incidence area (with significant exposure in the hospital she worked in) and her risk of contracting TB was therefore much higher. It was this history along with her clinical presentation that pushed TB up towards the top of my list of differential diagnoses. Secondly, a normal chest radiograph does not completely exclude TB. Thirdly, we should remember the value of good TB nurses, who delivered much of Mel’s ongoing care. Lastly, it is important to formalise care for our colleagues with an ongoing healthcare problem; Mel was slotted into the usual clinic set up quickly.
Useful resources for patients and clinicians
Health Protection Agency—Provides useful and comprehensive information on TB (www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/Tuberculosis)
World Health Organization’s observations on the observance of World TB Day in 2010 are available at www.who.int/dg/speeches/2010/world_tb_day_20100324/en/index.html
TB Alert (www.tbalert.org)—The only British charity working solely on fighting TB in the UK and overseas
British Lung Foundation (www.lunguk.org)—Resources are focused on providing support for people affected by lung disease. The foundation funds world class research, campaigns to bring about positive change in lung health, and aims to improve treatment, care, and support for those affected by lung disease
The truth about TB (www.thetruthabouttb.org) contains information on symptoms and risks of TB, treatment, and information and stories about people who have had TB in the UK
Heymann DL. Control of communicable diseases manual. 18th ed. American Public Health Association, 2004.
Cite this as: BMJ 2012;345:e6713
This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley () for guidance.
Competing interests: Both authors declare no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years, no other relationships or activities that could appear to have influenced the submitted work.
Provenance and peer review: Not commissioned; not externally peer reviewed.