I am 71 years old and have had problems with my lungs since I was 15. My first experience, when I was 15, was spontaneous pneumothorax. I had several partial collapses, mostly of my right lung. At the age of 18 I was treated by having olive oil injected into the pleural cavity of both lungs. When I was about 50 I was told that this treatment was used on several thousand patients, but never worked.
At the age of about 28 I contracted TB while working in Hong Kong. It went undiagnosed for two years. When it was diagnosed the condition was well advanced. I was feeling very ill and was coughing blood almost continuously. It did not help that I was on a ship going to South Africa with a ship’s doctor who had spent his working life as a missionary in Surinam and did not believe in antibiotics. He told me to eat liquorice and plenty of oranges. When I arrived in South Africa I was so ill I could not complete my journey to Botswana, but was admitted to hospital in Cape Town. This was New Year 1970. I was there for five months before I was fit enough to travel home.
Before the drug treatment for TB was completed, in August 1971, I had a severe haemoptysis and the upper lobe of my right lung was removed.
For many years after this I was quite well and fit, though my lung capacity was not good enough to allow me to climb higher than 8000 ft in the Alps.
In 1986 or 1987 I began feeling tired doing things that hitherto had been easy, but it was not until 1988 that I started coughing blood and went to see a doctor. I was sent to QMC in Nottingham where tests showed that I had bronchiectasis, but blood tests showed that I had been exposed to aspergillus. It was suggested that I should have the expanded middle lobe, now the upper part of my right lung, removed as treatment. The operation failed because of calcification of the pleura. I then resorted to drug treatment and management for the bronchiectasis. This went on for several years. Various antibiotics were tried, but none made any impact on my condition. In general I was tired much of the time, I had no stamina and low fitness. Attempts to exercise to regain fitness took me quite early to the point of exhaustion and left me ill for days.
In 1991 a CT scan showed a small aspergilloma on my right lung, but six months later it had gone.
After that the condition became fairly benign, though my energy levels remained low and I always had a productive cough and haemoptysis from time to time. Only two or three times in several years was the haemoptysis moderate to severe, but then only for a few hours. My medication was simple. I took Serevent inhaler twice daily and antibiotics when there was an infection that needed treatment. My appointments to see the consultant became annual.
With increasing age bringing a lowering of my expectations of my physical capability I could have lived more or less contentedly like this, but in 2004 my condition took a turn for the worse. The cough worsened, the sputum became foul tasting and I became prone to severe infections, some lasting several weeks. The chest physician I saw in Nottingham put me on Azithromycin three times a weeks and tried various other antibiotics to treat the condition, all with little success.
In 2006 a CT scan and bronchoscopy found a large aspergilloma occupying a cavity in the upper part of my right lung. No treatment was given. Then in January 2008 a follow-up CT scan arranged by a junior doctor showed that the aspergilloma, measuring 68 mm across, was very close to the main pulmonary artery. He went into panic mode and told me that it was in danger of eroding the artery, which would leave me to bleed to death. Since the failed operation in 1971 I was regarded as inoperable. He prescribed Itraconazole, but I was given the wrong instructions for taking it. It made me so sick I lost my appetite and lots of weight.
I was not very happy, so I went on an Internet search and found the Aspergillus web site. I asked my GP to arrange for me to be referred to Wythenshawe, which he did and I have been a patient there since April 2008. First I was told that aspergillomas did not cause haemoptysis the way the doctor in Nottingham thought and that I was not in danger of bleeding to death the way he had described. Next I was put on voriconazole. I had stopped itraconazole myself because I was feeling so ill with it. I was also given a box of tranexamic acid in case of a bleed. I took Vfend for several months, but then I started to lose the feeling in my toes. Prof Denning stopped the drug and put me on posaconazole.
There was a three-month hiatus between Vfend and Noxafil, during which time my condition became very bad. My cough was severe and I was producing lots of sputum and mucus plugs. At times I could fill an eggcup during one cough. In August 2009, when I was now on posaconazole, I had a CT scan and found that the aspergilloma had reduced in size. What I had been calling mucus plugs were probably bits of dead fungus. The disintegration of the aspergilloma either started when I was on voriconazole or during the hiatus afterwards. It continued until January 2010 when it seemed to have all gone leaving a large cavity with no fungus in it, but which was part filled by fluid.
On 29th January 2010 I had a very severe haemoptysis. It coincided with my appointment at Wythenshawe. My wife drove me to the hospital from Nottingham with a bowl, some towels and a kitchen roll for company. Dr Felton saw me and admitted me for emergency embolizations. I had the treatment on the following Monday after another very severe bleed. I coughed up about half a litre of blood in 20 minutes. Several blood vessels were stopped off through the femoral artery, but the bleeding did not stop until the final vessel was stopped off from the upper arm. After this Prof Denning told me that I could stop taking posaconazole, but in May 2010 I was admitted for three weeks for a course of IV amphoterycin-B and tazacin.
My condition was fairly stable after that until November 2010 when I started coughing blood again with moderate, but prolonged bleeds about once a month. A CT scan showed a slight change in the shape of the cavity and in April 2011 Prof Denning decided that I should go back onto posaconazole. He thought that letting me stop it had allowed the aspergillus to recolonise the lining of the cavity and cause the bleeding to restart. Immediately the bleeding diminished, but in August 2011 I had another prolonged haemoptysis. After five days I phoned the hospital and was admitted for embolization. Five vessels were blocked off from the femoral artery. One, accessible from the arm, was left. Since then I have had one or two moderate bleeds, so I guess they are going to have to consider doing the one vessel that was left, but otherwise I do not feel too bad.