I was diagnosed with Asthma at the age of 4 and began to use inhalers. I was constantly coughing and getting out of breath however the inhalers never really gave me much relief. I was also suffering as the years went on with sinusitis infection, facial pain and terrible headaches. This was treated with nasal sprays, however like the inhalers I never really got much relief from using them. I was averaging about 2-3 chest and sinus infections every year all through my childhood and these were treated with a course of antibiotics. I was off School a lot and I seemed to be unwell all the time. My fatigue was severe and my concentration very poor.
Its around the age of 10 i was really struggling and I was referred to a specialist respiratory consultant at the children’s hospital. I was a very unwell child on a daily basis, I was always cold and suffering with multiple symptoms. When attending swimming and outdoor sports I would shiver and present with blue lips, fingernails and the areas under my eyes were also blue on a daily basis. My parents explained all my history and the doctor listened to my lungs. At this point the Doctor without doing any further tests such as a CT Scan of my chest decided to refer me off to ENT as he felt it was more sinus related due to post nasal drip and hay fever. Like most parents not being familiar with conditions like bronchiectasis my mother didn’t think to question this WRONG decision.
At ENT I was sent for a CT scan of the sinuses. This highlighted I had nasal polyps and the Doctor recommended I have the polyps removed. I was now an outpatient at the ENT throughout my teen years however all my respiratory problems continued and gradually got worse moving into my 20’s. At one point I mentioned I could taste blood and that I even coughed small amounts up during exercise. I now know this is a common symptom of bronchiectasis however, my Doctor at the time said it was just down to the cold weather.
At the age of 16 I had my worse episode. On Christmas day my lungs felt like they had collapsed. the pain in my right side was severe and I was reduced to a quarter of a breath due to the pain so we went to the A&E. I was given a nebulizer medication and then send home within the hour with only slight improvement in my breathing. I was not assessed and another chance of diagnosis of bronchiectasis was missed.
Between the age of 19 and 22 I was given about 15 courses of antibiotics and I must have had something like 5 chest X-rays to date but never an in depth CT scan of my chest. My Doctor tested me for Cystic Fibrosis around this time but the test was negative. This clearly shows that the Doctor’s did understand the CF/bronchiectasis symptoms but they never looked further at my lungs to rule anything else in or out. Looking back its like none of these Doctors had any knowledge of bronchiectasis. If you think a patient may have Cystic fibrosis then surely you should then be checking for bronchiectasis if the CF tests are negative!
During this time In my life I was now too unwell to hold down a job. The extra demands I was under and my condition getting worse all the time meant my exacerbations were becoming worse and more frequent. On 2 occasions my lung pain was so severe I presented at A&E direct from work. Here I was given steroids and sent away within the hour. This pain is due to collapse in the airways and it’s common in bronchiectasis, but again a scan and an in-depth examination was not forthcoming.
Then at the age of 22 I was diagnosed with having Chronic Fatigue syndrome as my Doctors couldn’t pin point exactly what was wrong. They understood I was very unwell but failed to diagnose the right condition. I wasn’t happy with this diagnosis as I knew myself it was my lungs causing most of my symptoms but none of my Doctors seemed to want to get to the bottom of what was making me so unwell and simply put it down to Chronic Fatigue.
At this point tests had showed it wasn’t Asthma and my Sinusitis wasn’t causing such severe lung problems. Sinusitis in its self is a red flag of having underlying lung problems as 3/4 of bronchiectasis patients have Sinusitis but I was getting nowhere.
It was not until the age of 25 where I finally got referred for a CT scan of my chest after I changed Doctor once again and demanded a CT scan.
It was this scan that diagnosed that I had severe cystic bronchiectasis in my middle lobe with some permanent collapse and both lower lobes also badly diseased.
As much as I was happy to finally know what was wrong with me I was now angry that I had not been diagnosed sooner. When I began to read about my newly diagnosed condition i was reading time and again how crucial an early diagnosis is to enable people with bronchiectasis to access the right care plan and for them to have the best chance of slowing the progress of the disease down. Reading this i was upset and disappointed even angry at the clear failings. (especially when i had been sent to a respiratory specialist aged 10)
At this point I had many question and I was going through every emotion I can think of. The lack of support and understanding out there was also very difficult to accept and this began my desire to bring about change. Not just for myself but for others too.
Having now spent several years since my diagnosis reading and researching everything i can about bronchiectasis, it’s clear to see the symptoms I had were all a very clear indication of a lung condition like bronchiectasis. Like so many other people with bronchiectasis it was simply missed by the medical profession.
Having learned that my own experience is sadly all to similar to that of others with bronchiectasis it’s now time to address this. We need to have bronchiectasis spoke about far more in the medical field and work towards earlier diagnosis, better treatments and further research.
THANKS FOR READING MY STORY