Getting a rare disease diagnosis can be difficult and take a long time. This can be a problem, as time is something that those with progressive illnesses don’t have much of when it comes to disease progression. Stewart Armstrong, a 36-year-old man from the UK, dealt with exact problem.
Stewart thought he was dealing with a particularly bad bout of the flu after his symptoms of dizziness, fever, muffled hearing, and chills wouldn’t go away after more than two weeks. His partner, Janine, was pushing him to go see the doctor, so eventually he went. There, his doctor didn’t know what was causing his symptoms and simply prescribed a medication to help with dizziness – which did nothing. Soon after, he began to cough up blood.
At the advice of his sister, who is a nurse, he took himself to the hospital, the same place where he had been diagnosed with sarcoidosis years before. In fact, he was referred to the same specialist who initially gave him his diagnosis. The next step was a referral for a CT scan, which was followed by weeks of waiting for its results. When they finally came back, Stewart still did not receive the right diagnosis; however, doctors did see something else: a ball of fungus as big as a coin in his left lung.
Stewart’s Story
The journey to a proper diagnosis was a difficult one for Stewart. Even after he had been dealing with worsening symptoms – severe cough, weight loss – for weeks and weeks, all that doctors were able to tell him was that the cause was most likely fungal. Because of this finding, he was prescribed itraconazole tablets, which may be used to treat thrush. He was sent home, where he then had an allergic reaction and was rushed back to the hospital. Soon after, his doctors advised that he stop treatment with itraconazole, and he listened. The issue was that his specialist never gave him an alternative to take.
Scared, anxious, and still dealing with symptoms, Stewart began to conduct his own research. It was through said research that he discovered the National Aspergillosis Centre (NAC) and was able to visit one of their doctors. There, he was diagnosed with aspergillosis, or more specifically, chronic pulmonary aspergillosis. Unfortunately, this meant that Stewart’s condition could only be managed, not cured. In his case, the fungal infection was damaging his lungs and spurring the growth of new blood vessels, which went on to cause bleeding in the lungs. Even more disheartening to hear? Stewart was told that he would only have eight to twelve months to live if he didn’t respond to treatment.
When he suffered another allergic reaction to his newly prescribed medication, Stewart was very frightened. He had to return to NAC, where he met with world expert, Dr. David Denning. Dr. Denning’s treatment course included two parts: a procedure called an embolisation and posaconazole. The former blocks the new blood vessels, effectively cutting off the blood supply to the fungus. The latter is a new, extremely expensive (£26,000 a year, or a little less than $27,500 USD) anti-fungal treatment.
Luckily, this treatment duo seemed to work. Stewart will have to remain on an anti-fungal for the rest of his life, and scans have shown that the infected areas have shrunk. Unfortunately, nothing can be done for the fungal ball, as it sits in an inoperable location in the lung. But on the bright side, Stewart is feeling better and able to focus more on the important things in life, like his upcoming wedding.
He also wants medical professionals to be more aware of aspergillosis and other rare diseases. There is a blood test that can diagnosis this fungal infection, called the precipitin blood test, although it is rarely requested due to the low knowledge and suspicion of these conditions. If his first doctor had been aware and ordered this test, Stewart may have been able to avoid a lot of frustration, confusion, and worsening symptoms.
Now he looks toward the future, which is still uncertain. No doctor can tell Stewart what his prognosis is, and he has to be very careful of other illnesses. This means no air travel and lots of air purifiers and dehumidifiers in his home. Additionally, he doesn’t know what caused the initial infection – where did he come into contact with aspergillosis spores? While he suspects that this happened while he was refurbishing his home, specialists say that there’s no way to be certain. In many cases, the spores can live on one’s pillow as well.
In the end, Stewart has the proper diagnosis and treatment to take on his diagnosis and chronic condition. His message? He wants medical professionals to be more aware of these diseases themselves along with the consequences they can bring to patients. You can read more of his story where it was originally shared on the Daily Mail.
About Aspergillosis
According to the CDC, aspergillosis is a rare fungal infection caused by a common type of mold called Aspergillus. Found both indoors and outdoors, most people breathe in this mold constantly and never develop a sickness. However, those with risk factors like weakened immune systems or lung diseases (like Stewart’s sarcoidosis), may develop one of the various types of this infection. Each type causes its own symptoms. Take allergic bronchopulmonary aspergillosis (ABPA) as an example. The symptoms of this form are wheezing, cough, shortness of breath, and rarely, fever. On the other hand, cough, shortness of breath, and coughing up blood are effects of aspergilloma, also known as a fungal ball. Chronic pulmonary aspergillosis causes weight loss, fatigue, cough, coughing up blood, and shortness of breath. Turning to allergic Aspergillus sinusitis, it causes a runny nose, stuffiness, a reduced ability to smell, and headaches. Lastly, there’s invasive aspergillosis, which tends to impact those already living with another medical condition. It causes shortness of breath, cough, coughing up blood, chest pain, and fever. If the fungus spreads to other parts of the body, other effects may arise as well.
