Sandra’s Story
I was finally diagnosed with Bronchiectasis approx. 14 years ago. Despite feeling quite ill for a prolonged period of time with an accompanying cough and a nasty phlegmy chest, it was incredibly difficult to obtain a diagnosis, and when I finally did, I wasn’t offered any onward management advice in my local area. I had no previous knowledge of what Bronchectiasis was, and felt completley at sea with it all. In desperation I went to see a private physiotherapist, who understood the problem, and put me onto a pulmonary rehab course, which was mighty helpful.
However, I still needed to get the proper medical care and after searching online, contacted the Royal Brompton Hospital, who offered me an appt. Thankfully, with the help of the hospital I was able to receive some treatment for the bronchectiasis and fully understand the issue. I was seen regularly until my condition stabilised, and afterwards at 6 monthly intervals, and was given a nebuliser and acapella to use at home. This treatment all made such a difference to my condition and also my mental wellbeing.
Each time I attended an appt. at the hospital I would take a sputum sample along with me, and a few years further on, I received a letter from my specialist at the hospital to tell me that they had found NTM in my sputum. I was able to get in touch with my specialist and she assured me not to worry about it as at the time I wasn’t experiencing symptoms from it. However, a few more years on, I did start to experience symptoms, weight loss, night sweats and a general feeling of being unwell again. So, once again I was searching online, trying to understand this additional illness, when I came across NTM Patient Care - I couldn’t believe how fortunate this was. I didn't feel I could keep troubling the hospital with what might seem to them minor queries, and despite their good care, there were still many aspects of this disease which were still worrying me. It so happened that there was to be a meeting for the NTM Group the following week, and although I was going to be out of the country when it took place, I was able to log into it, and well - it was incredible to find a Professor who gave a talk, had an open question time, other patients talking about their experiences with this disease, and it was the most amazing revelation to me. I no longer felt alone with it, and could get all the information I needed to help manage the disease, talk about my personal worries and know when to talk to my specialist about my drug regime.
Since then I have attended most, if not all of the quarterly meetings of the NTM Patient Care,I often consult their website, and am able to find answers or guidance for anything I feel I need to know in relation to the disease. At each meeting there is usually a speaker, sometimes a Nurse, or mabe a Physiotherapist, all giving advice on how to manage the disease. It is run by a Professor Lipman from the Royal Free Hospital in London, and to me has been the most amazing discovery.
I now sit on the management team for NTM Patient Care along with several other members, and our aim is to make others aware of our organisation, both Health Care Professionals and patients alike. We know that iNTM is a disease which is very difficult to treat, but it is all the uncertainty and stress that accompanies such a diagnosis that can make the patient more unwell, sometimes more so that the symptoms themselves, and even if a patient is being monitored at a hospital (but many aren’t) it is impossible to remember all your questions in your allocated appointment time, and this is where NTM Patient Care is such a tremendous help.