In Memory of Sandy Stevens
I met Sandy through the Aspergillosis Support Group run by the National Aspergillosis Centre in 2015. She like me was a patient at the Royal Brompton. Sandy was admitted regularly for intravenous antifungals and antibiotics and quite often her stays in hospital coincided with my appointments in outpatients. Hence how our friendship started.
Thinking back, she had to endure through so much. I think these courses started late in 2015. Being admitted every 6 weeks for 10 days intensive treatment. It would take a toll on her body. She would get high blood pressure and the drugs upset her electrolytes which in turn meant more intravenous treatments. Then there was the nausea, she had to deal with on top of everything.
I used to contact her whenever I had an appointment so I could come up to the ward to see her. Being a veteran of The Brompton, a lot of the staff knew me and I must admit we got away with quite a lot. If my appointment was early, I would visit Sandy first and take up goodies as I never knew how long my appointment would be. The nurses would be fine letting me in early as they knew me. Other patients sometimes looked peeved at the special treatment we got. The perks of being regulars. Sandy would sometimes apologise to me when I was early as she liked to have a bit of makeup on and her hair done. She was always immaculate. As our friendship grew, she was more relaxed.
One time I was being admitted and Sandy was in for her regular treatment and we were hoping we would be in together. She contacted me and let me know when a bed was free but unfortunately, I ended up being admitted the day after she left. We laughed that it was planned that way, they wouldn’t have us in the ward together, we would have caused havoc. She had an amazing wicked sense of humour and we used to have a laugh. Another time when she was in, I needed to have an oxygen test and she asked the physio how this was done. Within 24 hours I had a phone call saying I could come up the next day have the test done and visit my friend afterwards. She was the most caring, kind lady and even though she was going through hell she thought of others.
Whenever I go to Brompton for appointments my husband, Martin, comes along. He would come up to the ward and ask if Sandy needed/wanted anything then leave us alone for a gossip. Big fat blueberries or Milky Way bars and sometimes a TV magazine were the usual requests.
This time last year Sandy told me she was going to stop treatment. She was getting worse and it was taking its toll on her getting ready to come into hospital let alone the toxic treatments. Over the years we had noticed her weight loss even though she tried hard to put weight on. It was decided she would be sent home on palliative care. Even though I had no appointment I went up to see her. I was so shocked when I saw her. Martin did his usual trick and disappeared for a couple of hours and left us. Even though it was a sad meeting we still managed to laugh and put the world to rights. When it was time to say goodbye it as the hardest thing. Sandy walked with us to the lift, me with my sticks and her breathlessness we walked at the same pace. She hugged Martin then me and we didn’t want to let go or say goodbye we knew we wouldn’t see each other again.
The past year has been difficult for her, but she has managed. The Support Groups on Facebook have been a great help for her. She was able to vent when she was frustrated, and she made friends who messaged her to give her support. She always replied and kept in touch.
I was in Brompton in April and Sandy contacted me most days to see how I was, asking if the food had improved, she knew the room I was in and remembered some of the nurses.
I could not ask for a kinder friend who thought of others even though her life was so difficult. She will be missed by so many people as well as her loving daughter and sons.
Rest in peace my friend
Her funeral will be on 30th July 2019
In Memory of Lawrence Del Monte Lyon
Last week we had to say our goodbyes to Lawrence. He had been an active member on our Facebook support group for years. He had been suffering from Aspergillosis for 13 years and after a discussion with his loved ones decided that the pain was too much as he had no quality of life. A very brave man and an inspiration to all of us. He will be missed. Rest in peace Lawrence.
I have attached a piece that Lawrence wrote for Fungal Awareness Week in 2017.
Fungal Disease awareness week.
A Dutch contribution.
After a life long problem with bronchitis and other lung issues, 11 years ago I was diagnosed with Non-Pulmonary Tubercolosis. At that time I had lost like 45 pounds and was on the verge of collapsing.
I had 2 courses of meds for 6 and 9 months because they thought it came back after 2 years (rare but possible). At this point in time, I was already completely disabled and off work and was put into disability allowance. 5 years ago I got sicker again and was thinking that it would be impossible to have a third relapse to TB. So my specialist starting to search again. I was losing like 4 pounds per month and my wife and kids were very worried I would not survive this time. Again after a long period of testing my specialist decided he had to do a bronchoscopy and see for himself what was going on. Xrays and scans showed bad scarring and other structural damage but gave no further reasons or clues. After the scope, I remember my specialist just saying to me you’re full of them and they’re all infected.
When we went for the official results I was told I had necrotic chronic pulmonary aspergillosis (NCPA)with several aspergillomas (fungal balls in cavities). Necrotic means the fungus also can thrive on healthy tissue in the lung. I immediately knew that was bad news because I had knowledge of the disease. So now I”m 5 years down the road. I had itraconazole (got resistant) voriconazole (bad side effects) and posaconazole and still getting used to it. My social life is nearly as good as gone My family life (and a loving one I have) is revolving around me because I’m too sick most of the time. I just had a week of screening for a full lung transplant because that is the only option left that they can do for me. 28 August results day, yes or no. In case of problems, I cannot be resuscitated because lungs will collapse etc. etc.
But On the whole, I’m an optimistic life loving person who lives intensely if only on a square yard. I have 5 children 3 small grandchildren, a beautiful caring wife and refuse to be put in any corner. Respect and love people, teach what I have learned and fight for what I have. Despite knowing that I might not have a long time to go. Aspergillosis in all forms is a horrible disease and must be fought and preferably cured in the future.
In Memory of Roger 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, also lung cavities created earlier in his life. This was from an illness similar to TB called Non-Tuberculous Mycobacteria (NTM). It is not spread from person to person, neither in Aspergillosis – both are environmental. NTM is a common co-existing infection with Aspergillus. In this case, it was Mycobacterium kansasli specifically. The cavities 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 (NAC), at Wythenshawe Hospital in Manchester. NAC 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. These cause severe allergic reactions, making it difficult to breathe. They 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 is also linked to Aspergillosis. This widening of the airways, with damage to the cilia (tiny hairs), makes it difficult to clear mucous 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 immunosuppressant 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 (PID) 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.
The Fungal Infection Trust (FIT) is a little-known charity which raises money for research into fungal infection. This is 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
Ruth and family are organising a fundraiser in memory of Roger. This will be held on the 12th October 2018 and will be a Memorial Motown Night. All donations gratefully received to https://uk.virginmoneygiving.com/RuthRyder
In Memory of Joan Davies
22 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 wait 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 a 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 a 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.