In Memory of Roger Ryder

Lucy Ryder

Sadly my dad passed away in August 2017. Amongst other health issues he had been suffering from Chronic Pulmonary Aspergillosis (CPA) which is a devastating long-term fungal infection of the lungs caused by the fungus Aspergillus fumigatus, a type of fungus (a spore-forming mould) commonly found on plants, soil, rotting vegetable matter, household dust, building materials, and food items. Everyone breathes in at least several hundred of these spores every day, but they don’t usually cause illness in people with healthy immune systems – unfortunately my dad already had a compromised immune system and also lung cavities created earlier in his life from an illness similar to TB which provided warm homes in which aspergilloma (fungal balls) were able to grow. CPA is a horrid disease – for my dad, it caused a persistent cough, occasional bleeding in the lungs, weight loss and constant breathlessness and fatigue. In recent months he had been fortunate enough to have been under the care of the National Aspergillosis Centre, at Wythenshawe Hospital in Manchester, who had prescribed expensive anti-fungal drugs which were helping to control the fungal infection. CPA is a relatively rare disease, it is estimated that around only 450 to 700 people in England have CPA

The term Aspergillosis Covers a group of diseases that include Chronic incurable infections and Severe allergies. It can attack people of any age. Aspergillosis infections can affect any area of the body, but by far the most common are the lungs and sinuses. Aspergillosis affects around 15 million people worldwide and kills 1 million each year.

Pulmonary (lung) Aspergillosis causes Severe breathing difficulties, mucous plugs that are difficult to cough up and fatigue. In some cases, it causes large, frightening lung bleeds and permanent lung damage (Cavities). Aspergillosis often affects people with existing (Severe) asthma, including children. It seems to make Asthma far worse. Other conditions that are closely linked with Aspergillosis include; Cystic Fibrosis, Chronic Obstructive Pulmonary Disease (COPD) and Tuberculosis. Also, Bronchiectasis which is a permanent widening of airways from Mucous plugs. This makes it difficult to clear mucus from the lungs causing further infection.

Aspergillosis can also affect people with a weakened immune system and in this form can rapidly kill. Cancer chemotherapy tends to weaken the immune system it may also arise from immunosupportive therapy. This is used to stop organ rejection in people who have received a transplant. Other people affected are those with a genetic (inherited) primary Immunodeficiency syndrome – A large number of these are also children.

The main Difficulty in raising awareness is that illness caused by Aspergillosis often goes unrecorded when people have other conditions. This makes Aspergillosis a hidden killer disease.

FIT (Fungal infection Trust) is a little-known charity which works tirelessly to raise monies for research into fungal infection, to improve the diagnosis and treatment of fungal illnesses and to increase the awareness of their impact. FIT also set up and supports the Aspergillus website, a resource which provides educational information and support for patients, doctors and scientists who deal with Aspergillus infections.

Please, can you share this to help spread even more awareness of this silent killer? Please if you know of anyone from the public eye who may be willing to help spread awareness please let me know.❤️

Thanks for the support Lucy, Sally and Michael. xx

My Mums story – Joan Davies 2nd July 1933 – 22nd March 2017

On 22nd March 2017 my mum collapsed at home and died.  No warning, no goodbye and no final hug.  She’d gone and myself and my family were and are still broken.

 

Here is her story.

In  September 2016 she woke up one morning feeling off-colour.  This wasn’t anything unusual for her as she suffered from COPD and Angina but this day she felt different.  In her words I feel “rotten”

My sister took her to our GP who sent her for an X-Ray.  Within 48 hours after the X-Ray our GP contacted my sister to inform her that they had found a shadow on her lung and they couldn’t rule out Lung Cancer or TB.  She was referred to the chest clinic at our local Hospital to start a number of tests.

She had a CT scan – results inconclusive they then advised she would need a PET scan.  Again the results were inconclusive so they did it again.  Again, inconclusive.  They then arranged for a needle biopsy.  Again this was carried out twice, results were inconclusive.  I need to add that after every test I and my three sisters went with my mum for the results and as you can imagine the build-up for the news, whether good or bad was deeply distressing for us all.  They then decided in November 2016 that they would carry out an EBUS Scan.  An EBUS is the best scan at identifying cancer and this would give out the answers as to whether or not it was lung cancer. We were again called in on Monday 21st November to inform us that it was good news, no cancerous cells were found. Although they didn’t know what it was, they would see her in a few weeks with a follow-up appointment.

I can tell you the relief that we felt was amazing.  Our mum didn’t have cancer and she could now relax and live her happy, fulfilled life.  For 83 years old she was amazing.  Independent, stylish and full of good spirits.

December 2016 came and she started rapidly deteriorating. Her chest appeared to get worse, she was constantly coughing and losing weight rapidly.  My sister contacted the chest clinic and they made an emergency appointment, where they carried out another CT scan.  Whatever it was that was on her lung was growing, but they still didn’t know what it was.  She was then seen again in January. They informed her that it would be a fungal ball on her lung and they would refer her to Wythenshawe hospital, to see Prof David Denning who specialises in cases like this. 

In February 2017 she was getting worse, she could not leave the house as her coughing was now worsening and causing severe fatigue. She also developed another medical problem but for her dignity I do not wish to disclose the problem.  She was rushed into hospital via ambulance on 24th February 2017.  She had emergency surgery and was treated. I asked whilst she was in there, if someone from the chest clinic could come over and see her.  After waiting for over three days they popped over to the surgical unit and said you appear to be fine and await for your appointment with Wythenshawe Hospital.  When we chased it up, it had not been marked down as urgent and even though the referral request was made in January they could not accommodate her for another 6 weeks.  (This was not their fault – when something is not marked as urgent you don’t take priority). Mum was discharged on 2nd March 2017.  Her discharge form said possible Aspergilloma? So I did some research and I then knew exactly what was wrong with my mum.  Everything stacked up.  When she came home she was clearly getting worse, she was losing more weight and the cough was horrendous.  On 22nd March 2017, in the arms of a district nurse she died.  She suffered an horrific death.  The ambulance and the nurse did all they could, but it was too late.

She was sent away for a post-mortem and results were inconclusive and tests were to be carried out.  Fortunately, for us her body could be released for her funeral.  How we got through that day I will never know.  It was beautiful though and so many people came to say their goodbyes.

Six weeks after her death we got the results.  She had bronchial pneumonia and an aspergilloma.  An aspergilloma is a fungal ball within the lung.  This is caused by the disease called Aspergillosis, which is a silent killer.

Aspergillosis can’t be cured but it can be managed to make a patient more comfortable and let them live their life a little better.  My mum never got that chance. 

Since my Mum’s death I am spending my spare time helping to fundraise for Fungal Infection Trust who research this awful disease.  They get very little funding and need as much help as possible and to help them I am holding a charity ball in memory of my Mum on 24th November 2018.  We are very excited and hope to raise a substantial amount of money and raise even more awareness about this horrible illness.

Thank you for reading my Mum’s story and I hope we have helped raise more awareness of Aspergillosis.