Carole Wooster – NSW

Diagnosed 1998 – NTM disease – Mycobacterium Avium Complex  (MAC)

Carole was in her mid fifties and had been unwell for some years. She was tall, slim, active, and never smoked. Carole was intelligent, loved fashion, photography and gardening. Carole had developed a chronic dry cough, night sweats and unexplained weight loss and the thought had crossed her mind that perhaps – this was just menopause. She had also developed Gastroesophageal Reflux Disease (GERD) and indigestion type chest pain and after several gastroptomies/colonoscopies, chest X-Rays and a CT scan of her heart there was no clear explanation or diagnosis. Carole was also unaware that her passion for gardening or GERD symptons maybe a contributing factor of pulmonary Ntm disease. Her general appearance didn’t present with that of someone who was so unwell and she wasn’t to know that her symptoms were nonspecific indicators of the little known Ntm disease. After two bouts of pneumonia followed by several courses of antibiotics there was no improvement and Carole was feeling worse and now suffering shortness of breath. During a minor unrelated medical procedure and subsequent comment from her Anesthetist – that her lungs sounded very crackly, Carole knew that she had to get some answers and little did she realise that this was just the beginning of her journey with Mycobacterium Avium Complex lung disease. This was some years ago and Carole has just recently commenced her third round of treatments in an effort to once again, get some control over this debilitating disease – which has resulted in major changes to her lifestyle and significant damage to her lungs. Carole often recalls that late evening phone call from her Doctor – it was her birthday – and requests for immediate scans, a bronchoscopy, more blood tests and three individual sputum cultures and the moment her Respiratory Physician told her “I have good news and bad news for you Carole – the disease you have is Non Tuberculosis Mycobacterium Avium Complex (MAC) – contracted from the environment and although not contagious, it’s extremely difficult to treat and will require months or years of multiple drug therapy – that can have serious side effects – and require constant medical supervision”. Carole like so many people had not even heard of this disease and was understandably devastated. How do you explain to anyone that you have a type of Tuberculosis and you’re not contagious? Carole often reflects upon – had her MAC been diagnosed earlier – the disease may not become so widespread and now be resistant to many antibiotics, as well as suffering bronchiectasis – as a result of her many infections and pseudomonas. Carole’s severely damaged airways now require a twice daily regime of postural drainage to clear the mucus that is a major cause and concern of secondary infection. Carole commenced her first round of treatment in 1998, of daily Ethambutol, Rifampicim, Inah Pyrzinamide and Pyridoxine and although there were many side effects she completed the treatment, and was relieved, when her test results revealed the MAC was no longer growing. Carole then continued to maintain as active a life as possible, mindful of her limitations and always taking the upmost care of her health. In 2007 following the loss of her husband – after caring for him with motor neuron disease – Carole’s worst fears were confirmed – the MAC was again active – and treatment commenced for a second time. During ensuing years the decision was made to cease Carole’s treatment as the MAC had now became resistant to the medication. There was obviously much concern as to the risk of secondary infections and Carole continued to receive constant medical supervision and support from her Doctors. Carole’s Pulmonary Doctor advised her to visit Doctor Rachel Thomson – in Brisbane who specializes in Non Tuberculosis Mycobacterium disease of which MAC is a strain and as Carole’s health continued to deteriorate, with recurring lung infections, chronic stomach problems and severe weight loss an appointment was arranged and it was decided the best option for Carole was to commence – intravenous treatment via a picc line. Unfortunately this treatment was delayed somewhat when Carole subsequently suffered a episode of hemoptysis (bleeding from the lung) and then contracted a serious clostridium difficile infection.

In April 2014, Carole was admitted to Hospital and commenced her third round of MAC treatments with thrice weekly intravenous Amikacin and Azithromycin and nasogastric feeding – in an effort to increase her weight. Oral medications were avoided because of major issues with her stomach. Upon discharge from Hospital, Carole’s picc line treatment continued for a further six weeks, with the addition of oral medication. Once the intravenous treatment was completed a regime of ongoing thrice weekly oral medication was commenced. Carole is suffering many side effects from the medication – especially chronic stomach problems – but she realises this treatment must continue for as long as she is able to tolerate it, in order to suppress the MAC infection. Carole knows how very important it is to have a good rapport with your Doctors and is grateful for the support that she has received during those weeks of intravenous treatments and the ongoing support from all of her wonderful Doctors. My name is Debbie and Carole is my Mum and I have been by my Mum’s side throughout this journey. My Mum is a true inspiration, as she continues to fight this disease with such strength and dignity. Carole has learnt to live with this disease and not live for it, choosing not to discuss her disease with anyone other than her Doctors. Upon commencing her third round of treatments and been introduced to the excellent support forum Ntmir in America – by her NTM Specialist Dr Rachel Thomson – resulting in contact and support from another Australian NTM patient Mervyn Couper. My Mum and I, now realise the importance of telling her story, because of the urgent need for more awareness and support of NTM disease Australia. We hope our story will be of support to other patients who have been diagnosed with NTM disease – not to give up – as with more awareness and continued research into Ntm disease – there will soon be more advanced treatment options available in Australia.