Here is my Aspergillosis story…

I started having problems with my health around the end of 2006. It began with problems eating then succumbing to emphysema due to smoking. I was diagnosed as having Dysphagia and I was loosing weight all the time. My family seemed to think that I simply wasn’t making an effort to eat, telling me to eat small amounts of food at a time, but they could not understand that the food was just not getting into my stomach, it was getting stuck in the food-pipe just outside the stomach and taking ages to work its way down (I later came to believe a fungus ball was lying dormant just outside my oesophagus, the doctors had diagnosed this as a hiatus hernia). As a result of poor diet my immune system was compromised.

I did stop smoking with little problem but soon I began to get one infection after another.
Doctors were often baffled as to the identity of a lot of the infections and as a result I had many stays in hospital while they constantly carried out sputum and blood tests until they could identify the offending bugs. Fortunately, they were always very determined and eventually identified most of the offending culprits and would promptly plan a medication schedule accordingly.

The first very serious threat to my health was in October 2009 when I was admitted to St Thomas’ Hospital suffering from malnutrition and lung infections which resulted in an eight week ‘touch and go’ stay in an isolation ward. I even got Swine flu during my stay. The hospital was magnificent though and an army of medical staff pulled out all the stops until they got me better again. I don’t remember the first few weeks as I was semi conscious most of the time but my wife told me later that the doctors had confirmed that I was gravely ill. Around this time the doctors found the Aspergillus in my lungs so they put me on V-Fend for that, and suddenly I was able to eat again and my weight started to slowly increase, even though I was coughing up huge quantities of thick sputum – and one consultant commented that I was like a sputum factory!

They finally got me back on my feet (wheelchair bound) and I was discharged on 2nd December 2009 – home in time for Christmas. I was discharged from the hospital with the following medications:-
Ethambutol 700mgs
Rifabutin 300mgs
Clarithromycin 500mgs
Moxifloxacin 400mgs
The above drugs (All Very Strong) were mostly for an infection they called “Pulmomary Mycobaterium Xenopi” 🙂
and the other bacterial infections present.
Voriconazole at 300mgs twice daily for the asper infection
Lansoprazole 30mgs for excess acid.
Carbocistiene for the mucus
Tiotriopium inhaler
Seretide inhaler
Salbutamol inhaler.

I was assigned a district nurse to help me out and monitor my progress. At this point I was unable to walk up the stairs in my house and my mother stayed at our home whilst my wife went to work for a few weeks until I was strong enough to negotiate the stairs and collect food. My health and strength soon started to improve due to good food and a healthy appetite.

Then More Problems… As a result of interactions relating to the cocktail of medication I was on, my eyes started to play up towards the end of March. At the beginning, for the first month or so, I started to see a square white light when I closed my eyes and this lasted about an hour after taking the Voriconazole. When I told the doctors about this (who quite often were registrars that changed frequently from one visit to the next) on two occasions they didn’t attach much significance to it. However, by April 2010 my eyes started to deteriorate rapidly to the point were I could no longer focus on anything or distinguish colours. As an example, if I stood face to face with someone I would not be able to see their features properly. An emergency visit to the clinic resulted and a doctor (who took it very seriously) stopped all medication and arranged for me to be seen by the eye casualty department immediately. By May I was being seen by eye consultants from all over because of the unusual circumstances and rapidity of sight loss. At one point I asked why so many consultants wanted to examine my eyes and was told the problem with the optic nerve deterioration was so unusual that they may never see it again. After the initial months, the deterioration stopped and about a year later I started to notice a slight improvement but I have now been told there is permanent damage to the optic nerve in both eyes. Just recently I was registered as partially sighted and received my CVI (Certificate of Visual Impairment) a few days ago.

I’ll now return to what happened to my lungs after I was taken off all my medications in April. During May I started getting heavy palpitations and really breathless for no reason and on 30th May I was back in hospital. When I had a chest X-ray it showed that the Aspergillus had eaten into my left lung so badly that only a small upper part is left and now that lung does not work at all. The right lung is also badly scarred and very holey.
At this point I was put on Itraconazole which stopped the rot but after a while I started coughing up blood and I was then referred to Manchester as they are the specialists in the treatment of CCPA and other Asper conditions.

I now breathe heavily all through the night and get very breathless very easily during the day. Multiple fungal balls in my lungs are also a constant threat to my health.

Best wishes