In November 2003 I suffered 2 ectopic pregnancies within weeks of each other, I had been pregnant with twins. The first operation bled the baby that was trapped in my tube (they were trying to save the tube) but unfortunately there was another baby in there and 10 days later it ruptured my fallopian tube and I was rushed into emergency theatre. I left hospital with a terrible chest infection and on antibiotics. After months of a repeat of what happened in 1997 I was again diagnosed with bronchiestasis, this times in both lungs – Nightmare!! It was April 2004. The consultant had also detected something wrong with my heart and after more tests I was also diagnosed with cardiomyopathy. I decided to reduce my hours at work to 30 a week to try to help with my energy levels and help keep me well. Still, I spent the next 6 years in and out of hospital, taking lots of time off work sick and swallowing many many antibiotics. I saw the consultant every 6 months and he asked me the same questions every time. “How much sputum are you bringing up?”,” what colour is it?”, “How many lots of antibiotics have you had since I last saw you?” and then he sent me on my way.
After a particularly bad winter, I had spent virtually the whole of January 2010 in bed and I was thoroughly fed up and feeling very lonely. Whilst my family were brilliant and very supportive they really didn’t understand what I was going through. I decided to look for others with my condition and found Bronciestasis R Us on line. Within minutes of registering a member had contacted me to welcome me aboard and offer me some advice which turned out to be the best advice I have ever been given. He told me that the key to managing this condition was to make sure you had the right consultant. I searched on a database and after bringing up 183 possible matches, Prof Denning was at the top. I asked my GP for a referral and within a week Prof D had agreed to see me. 3 weeks later just before Easter in 2010 I was in front of this wonderful man clutching my medical records and X-rays under one arm and shaking his hand with the other. Anyone who knows this man and his team will know what the next few weeks were like. He took over 17 blood samples, did scans and x-rays, made me cough regularly into sputum pots and got a Dr in Leicester to stick something painful up my nose and scrape away some brain cells!! Within a month he told me I had a mannose binding lectin deficiency (immune system) and aspergillos. He started me on a daily dose of azithromycn and itraconzole. I was seeing him monthly and after a couple of months he changed the itraconzole to sporanox. I have never looked back. The change in me was almost immediate. I had more energy, no infections and felt great. For the first time in years my husband and I could plan things without feeling worried that they might never happen. I stopped work as I felt enough was enough and if I was going to have any bad days I wanted to make sure the good ones were spent doing things I wanted to and enjoying myself. My husband is an angel.
We cleared out the loft in October 2011 and I ended up in hospital in terrible pain. I was put on morphine and doxi and stayed there for a week. I have been well since…………..