Gary’s Story
My name is Gary, I am 57 years old and in 2010 after what seemed like a lifetime of illness I was diagnosed with Wegener’s granulomatosis.
It all started in October 2009 when I noticed my eye kept watering and my sinuses were constantly blocked, I made an appointment to see the doctor and was given nose and eye drops, the symptoms continued and got worse and by early December I started to get flu like symptoms which included aching joints and pains in my ears I was so tired all the time I could hardly do anything without feeling drained.
Christmas came and I tried my best to join in with the family celebration but by this time I was having difficulty with my breathing and had to give in and go back to bed. I spent the rest of Christmas and New Year in bed and in early January I knew I had to go back to the doctors. The doctor had me admitted to Medway maritime hospital where they treated me for pneumonia, after 5 days and still not feeling any better they sent me home with antibiotics.
The next 2 weeks I carried on getting worse, most days I couldn’t even get out of bed, I was suffering with nose bleeds, I was weak because I couldn’t eat and had lost so much weight and also I had started to lose my voice.
On January 30th I awoke with chest pains, my wife called an ambulance and whilst on route I suffered a heart attack, on arrival at Medway hospital I was stabilised but because they thought I also had pneumonia I was transferred to St Thomas’s hospital where I was taken into theatre and fitted with a stent. They also tested me for swine flu but this came back clear.
A few days later I was starting to feel a bit better, I was hoping this would be it and I was going to be well again but no that didn’t happen the next day I had the same chest pains and was taken back into theatre to be fitted with yet another stent.
Due to my condition and because I was so ill my family requested I remained at St Thomas’s and not be returned to Medway hospital, thankfully they agreed as the next day I suffered internal bleeding and was rushed to intensive care and put on life support under the care of Dr Gibson, 2 days later my condition started to improve but I was still critical and remained in intensive care for a further 2 weeks where I was diagnosed with Wegener’s granulomatosis, which we later found out was the reason for my heart attack.
My treatment consisted of 8 courses of cyclophosphamide which was given every 2 weeks, after the first course of treatment I started to feel better straight away and was moved from intensive care to HDU where i started a course of physio to help me walk again as I was so weak and had lost so much weight, after my second session of cyclophosphamide I continued to do well and was allowed to go home. After I had finished my 8 courses of cyclophosphamide I was put onto 25mg of methotrexate and steroids.
The Wegener’s did affect my airways and my breathing was slowly getting worse, a few weeks later I collapsed at home unable to get enough oxygen, my wife again called an ambulance and I was taken back to Medway hospital, I was assessed on arrival and transferred to charring cross hospital under the care of Dr Sandu, I underwent laser treatment on my airways, and was sent home 2 days later but had to return a further 4 times for laser treatment, until march 2011 where I underwent major surgery to rebuild my airway, they used cartilage from my ribs and a skin graft from my leg to reconstruct the airway, I was fitted with a trachea for 4 weeks and finally after 5 long weeks I was allowed home.
I have now improved considerably and have returned to work full time. I am still under the care of Dr Gibson and the brilliant Wegener’s team at St Thomas’s hospital and I have regular check-ups every 6 months, I am happy to say after all that I am still living a full and happy life with my wonderful family.
