With my diagnosis, I can make changes to my lifestyle
Lorri wants everyone to be an advocate for their own health to get a diagnosis as early as they can.
I first noticed my breathing problems on a long-haul flight and struggled with my breathing while I was away. I thought it was a virus, but after some planned surgery the following month I developed a cough, struggled with my breathing and was admitted to the emergency department.
The doctors weren’t sure what had happened, and I was discharged to my GP. I was then referred to a thoracic and respiratory department for 18 months. During this time, I found walking and talking at the same time increasingly challenging. At times I’d feel fine, then going upstairs would leave me incredibly breathless. I developed a persistent cough and felt tired a lot of the time.
My consultant carried out regular lung function tests and CT scans said the results were normal. My consultant seemed unconcerned and said I had mild asthma that would be monitored. My next appointment wasn’t for another 4 months. I left feeling very confused.
My tiredness, walking without getting breathless and cough were causing real issues. I knew something was wrong.
But my lung function results were normal again! I was told I was getting breathless because of my asthma. I was prescribed inhaled Ventolin (a reliever inhaler) and steroids which had no effect. Things weren’t adding up. I felt my consultant wasn’t listening to me or answering my questions.
Ask for a second opinion
I spoke with the BLF helpline. The nurse gave me some advice that I tell people to this day: if you don’t feel like your questions are being answered, ask for a second opinion.
I had an open conversation with my GP about my concerns. My care was transferred to another local hospital, and I saw another consultant. They felt I should have a challenge test to check the sensitivity of my airways. This would hopefully prove if my diagnosis of mild asthma was correct or not.
This time, the results showed my lung function was normal, and I didn’t have asthma. My gas exchange rate was low, and had declined since my last test. The notes had arrived from my original consultant, showing this had been a problem from the beginning. The results indicated early stages of interstitial lung disease (ILD).
By now, I was emotionally exhausted and just wanted a name for my problems. Thanks to my husband, I finally got a straight answer. He asked, ‘yes or no – does my wife have an ILD?’
The consultant said I did. I haven’t been diagnosed with a specific ILD at this stage, but because of the lung scarring it’s likely to be pulmonary fibrosis. I am now under a team and am being monitored every 4 months. I’ve since had pulmonary rehabilitation and advice from specialist nurses on pacing my walking and exercises.
It took 2 years of back and forth to get to this stage!
Finding out the group of conditions I belonged to has given me a huge sense of relief in better understanding my situation. While it can be hard to hear your diagnosis, I’m happy to be getting closer to a better path forward. I can make changes to my lifestyle and work with my health care professional to improve my symptoms.
Without speaking to the BLF helpline, I wouldn’t have had the courage to speak to my GP about getting a second opinion. It’s important to feel you have a voice, and had I not been my own advocate I may still not know what was wrong.
Don’t be scared to ask questions
Don’t be scared to question a health care professional. After all, there are no stupid questions when it comes to your health. I’d urge you to overcome any fear of finding out and ask all the questions you have in your mind.
I find it helps to write down a list of questions when you’re calm and on your own. It’s easy to forget things, so by having things written down you’ll feel you’re in control and getting the answers you deserve. Time is limited in consultations, but another 6 months could pass before the next review.
I’m in a good place at the moment. I’ve organised a Take Steps walk with my family and friends around an old Victorian asylum! We’re aiming to do 5 laps of the site, which’ll go through the orchard and cricket pitch. It’s a beautiful walk and we’re looking forward to a great day of fundraising.
Feeling inspired by Lorri? Find out how to organise your own sponsored Take Steps walk this summer!
Tests to measure your breathing
Breathing tests measure how well your lungs are working. Find out more.