My son, Gareth, was a fit healthy 16 year old boy, playing football, preparing for his GCSEs and with aspirations of studying medicine. Then in May 2011 he developed a bit of a cough and cold. However, as he had mild asthma in childhood and because I’m an over anxious Mum, I called my GP to be told that as a “non emergency” I should call back next day if I was still worried.
Early the following morning I was woken with a feeling of dread and checked on my two boys. Gareth was sitting up in bed, very breathless and coughing up blood! An ambulance was called and Gareth was rushed into Addenbrooke’s Hospital. He was given oxygen and had a chest x-ray. This revealed severe bilateral pneumonia. We were assured after a few days with IV antibiotics Gareth would quickly recover.
However, it became evident over the next few days and weeks that he was becoming very ill. He was transferred to intensive care, literally fighting for every breath. He’d lost two stone and was terribly weak. An artificial coma was induced and a ventilator took over his breathing. He had further tests – CT scans and lung biopsy.
Finally a diagnosis – “Anti GBM (Goodpasture’s) disease”. This is a rare form of vasculitis which attacks the lungs and kidneys. Thankfully there was no apparent kidney involvement, but this would require monitoring closely. He was started on high dose IV steroids immediately. Our whole world was torn apart.
A few days later Gareth was woken and we gently explained the situation to him. He was also suffering from hallucinations and nightmares but the ICU staff were outstanding and supported both Gareth and ourselves.
Within 48 hours of starting the steroids he finally showed improvement. A week later he was moved to the high dependency ward where we met the wonderful Dr Jayne and his team. Dr Jayne explained to Gareth exactly what Goodpasture’s disease was and how they planned to treat him. He explained, in no uncertain terms, that they were going to hit him with a sledge hammer, that the treatment was going to make him feel awful but it would work! The treatment consisted of plasma exchange for seven days in addition to six pulses of cyclophosphamide every other week.
It’s been a rough ride and there have been a few hospital admissions due to infections. He also developed blood clots on his lungs, which is part and parcel of the vasculitis, but I truly believe that Dr Sivasothy, Dr Jayne and his team saved my son’s life with their prompt diagnosis and treatment.
Six months on Gareth has a strict daily medication regime, weekly blood tests, and regular hospital appointments. He is still very breathless at times and has nightmares from his experience, but he is alive and slowly but surely improving. He is doing very well at the moment, has reduced quite a lot on the oral steroids but gained on the inhaled steroids, and the moon face is starting to go down which he is really happy about.
My son is an extraordinary and brave young man. Despite everything he has been through, at such young age, and everything he has had to give up, he still has his wonderful sense of humour and positive attitude. I am so proud of him.
Footnote to Gareth’s story: On 27th March 2013, despite two years battling illness, Gareth passed his driving test at the first attempt. Congratulations Gareth.
Update from Gareth: After completing my A levels in 2014 I was offered a place at the University of Chester to read Biomedical Science. After a very fun and at the same time stressful first year I’ve managed to pass with a first, which has taken me one step closer to my ambition of studying medicine for which I am over the moon with!
During this year I was invited by Susan and John to attend the Patient Symposium in London as a volunteer which was an invaluable experience, and I spent most of the day completely engrossed in the world of rheumatology and patient care. I hope that one day in the future I may be able to attend another symposium/conference just like it.
It has now been four years since originally being struck down by my disease and my overall health is improving. Thanks to this I have been able to go to many festivals and gigs such as Reading and I have just returned from a weeklong festival in Croatia called, Hideout. If my health continues to improve Glastonbury is next on the cards! I’ve managed to completely come off of prednisolone and stay off of it and my warfarin has also been stopped now my blood clots have gone. My lungs are still have not returned to what they used to be and I still continuously pick up infections, which is inevitable with vasculitis, as we all know, but I hope as time continues, my health will continue to improve.
Update 2017
Gareth gained a 1st degree in Biomedicine at Chester University and began a PhD in Infectious Diseases in September of this year.
You may also like to see the Individual Disease page on Anti GBM – Goodpasture’s Disease