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Allen

AllenWhilst Assistant Head Steward at a golf club, Allen began suffering from a sore throat and a mild chest infection. He thought it was just a case of ‘man flu’. Working in the Club House on a golf course, Allen was used to catching colds from customers. However, it wasn’t until his symptoms remained and intensified that he felt he was experiencing more than just ‘man flu’.

After several trips to the doctors, Allen was diagnosed with having pneumonia. As he worked long days maintaining the Club House in all weathers, he thought that pneumonia seemed an almost certain explanation for his symptoms. He was put on a course of treatment immediately, but unfortunately, he did not respond to his medication and his condition worsened.

Allen had also lost an alarming amount of weight. Initially, he didn’t notice his weight loss, as it was winter and he was often wearing baggy, thick jumpers. Nevertheless, he became quite concerned after he realised he was losing a lot of weight without any effort.

Allen then returned to the doctor with these new concerns, but they found it difficult to diagnose him. This was because he was showing many symptoms that could be associated with various different illnesses. After a week or so of numerous tests, doctors put Allen in for a biopsy, where he was diagnosed with TB within 8 hrs.

Both Allen and the doctors were surprised at his diagnosis and were unsure where he may have contracted TB. “There was a possibility I may have picked it up from a pub I used to visit in Grantham,” says Allen. “They tried to trace it back there, but nothing official was ever proven”.

Allen was then put on a course of TB medication for 18 months. During this time he had to stop working and became virtually sofa bound and a recluse in his own home. ‘It got to the stage where the only time I would venture out of the house was to have my medication at the hospital – for one hour, three days a week”. Allen also became increasingly nervous and paranoid about his appearance. “I chose to wear a scarf around my mouth and I only weighed eight and half stone, I looked like a prisoner of war”.

The psychological effects of TB did affect Allen particularly badly, especially as he found himself stigmatized by various people. He felt isolated as he realised some people did not want come near him as they knew he had TB and were worried that they would catch it. “The mental effects of TB still affect me today” he adds.

Allen also struggled with money during his illness. He was given statutory sick pay for a year from his job; however, things did become very tight financially. Fortunately, his younger sister moved in with him for a year, and managed to get herself a job locally, in order to help support him. Allen was very fortunate and happy that his sister was willing and able to help care and financially support him. Nonetheless, he felt that the hospital could have offered more advice and support for his physical and mental home care and his finances.

In April 2007, Allen finished his medication and was officially cleared of TB. Of course this was a big relief to him and his family after nearly two years of continuous blood tests, x-rays and strong medication. However, in the last year of taking his TB medication, Allen developed severe chest infections at least every two months. He was later diagnosed with chronic obstructive pulmonary disease (COPD). It is highly probable that it has been caused by scar tissue damage that has been left on Allen’s lungs due to TB. Unfortunately, this means that he still has to take medication and will probably suffer from lung and chest problems for the rest of his life.

Despite this, Allen remains relatively upbeat about his experience with TB and his future. “I’ve learnt to live with it and it’s not the end of the world” he says. “I am moving on and I will come out positively”.

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Louise

LouiseDespite giving up smoking and a course of antibiotics, Louise’s chest infection did not clear. She went to her GP many times with an ongoing cough, weight loss, sweats and a general feeling of tiredness – classic symptoms of TB. Yet it took a visit to A&E, after coughing up blood, before Louise was diagnosed with infectious TB.

When Louise became ill with a chest infection at the beginning of 2009, she was not particularly concerned. It was not unusual for her to have this condition, which she assumed was a consequence of smoking. However, this time the infection did not respond to the antibiotics that she was prescribed.

Despite giving up smoking, Louise returned to her GP many times that year with unexplained symptoms, including a cough that was not getting better, weight loss, sweats and a general feeling of tiredness and weakness – classic symptoms of TB. Louise’s doctor prescribed inhalers, antibiotics and painkillers, but her condition did not get any better.

‘I became more introverted and isolated. Any exercise or movement left me exhausted, so I stayed at home while I wasn’t at work. I was too tired to stand for even short periods of time.’

As an accountant, Louise was able to carry on with her work for some time, as she could do her job while sitting at her desk. Looking back, though, she reflects, ‘I think I was in denial about how ill I actually was. I lost a lot of weight and was never hungry. In December 2009 I remember coughing up blood and thinking I had cut my mouth.’

When Louise coughed up more blood the following week she became worried, and went to A&E that evening. Whilst there she received a chest x-ray, which she was told showed some ‘abnormal findings’. Louise was immediately admitted to hospital, and put into isolation the very next day with suspected TB. She remained there for two weeks, though she did not truly believe that she could be infected. However the three sputum samples she provided came back positive.

Having received a positive diagnosis, Louise was prescribed TB medication and allowed to go home. Within 2-3 weeks of taking her medication, Louise noticed her condition begin to improve. ‘My strength started to increase day by day, I was allowed to return to work and my appetite returned with a vengeance. I was lucky that the only side effect the tablets caused was acne. I obviously didn’t want acne, but there is NO choice between having spots and feeling as ill as I did!’

After completing her treatment and being cured of TB, Louise was advised that her lungs were scarred as a result of the length of time that she spent infected. She was told that her lungs would require careful monitoring in the future. ‘My biggest challenge now is to maintain a healthy lifestyle so that my immune system can fight off any future infections and I can live a normal, active life.’

However, Louise’s TB journey did not end with her successful treatment, as precautionary tests on her family, friends and colleagues came back with many positive results including her mother, father and sister. Louise explained that TB continued to be a big part of her life whilst the people she had infected were treated. The majority of them required treatment for latent TB, though her sister was treated for active TB having gone on to develop it. Louise is now in good health and has a positive outlook for the future, but the emotional impact of TB remains strong:

‘I have suffered terrible feelings of guilt for the people I infected. I have also been subject to weird reactions from people I know and love, when they were informed of the nature of my illness. I guess TB still has a stigma attached to it. My consultant told me at the time of diagnosis that TB brings out “the hysterical” in people and I now know that he was telling the truth!’

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Gemma

GemmaGemma first became ill at the beginning of 2009 at the age of 23.

“My first symptom was weight loss – at first I didn’t think anything of it. It wasn’t till I had lost a stone that I went to the doctor. By this point I was feeling like it was somewhat out of control and I didn’t like it. I also suffered from terrible night sweats.

“Once I had taken notice of the night sweats and weight loss, it was another few months before I noticed that I was feeling incredibly fatigued, it was like having the flu but with none of the pain. I could sleep for 13 hours a night, and would still need a nap in the afternoon! “

Although TB was discussed and suspected at her first visit to the doctor, it took six months from the referral from her GP until she was started on anti-TB medication. “In the interim they were convinced it was cancer, and many other nasty sounding diseases “ says Gemma. After numerous tests, she was treated by the professor of medicine at St Georges Hospital for TB of the kidney.

Gemma has always lived in South London, and although she’s done a little travelling she has no idea how she picked up TB, however it is suspected she may have first picked it up at school.

“When I found out I had TB I was actually relieved! By that point I felt so awful I just wanted answers, it was awful not knowing.”

The start of treatment was particularly tough, as she still felt ill and lethargic, plus was feeling ill from the medication, with the nausea the worst part. Her treatment lasted six months.

Gemma’s family were very supportive of her during this time, but others found it more difficult. She found that no matter how much she explained to people it was not contagious at that point, it still had a lot of stigma surrounding it.

“At the worst point of my TB I was completely fed up, but too tired to be angry at it anymore! It was a bad time, for me and everyone around me. If I look at photos of me and my family at that point, I’m not the only one who looks ill! It was incredibly tough, but has made me a stronger person.”

“Today I am absolutely fine; following my treatment I started running to gain back some of the muscle loss from the result of being ill. Since then I have even completed the London marathon and a number of half marathons.”

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