GAtherton

Coping with Aspergillosis

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So how does one cope when discovering they have an unwanted guest residing in their air ways or nasal passages, or any where for that matter?
My own experiences most likely mirror those of many ABPA sufferers but I thought I might mention them so any newcomers to our fungal community could be forewarned of what they may expect. So here goes.

Upon being informed I had Aspergillosis, and the fact that my consultant insisted I sit down and brace myself before he told me, was somewhat disconcerting to say the least! I really thought he was going to say I had cancer or a similar life ending disease or illness! In some ways he was right, aspergillosis can be life threatening, it is certainly life changing! 
For the first year or so, my life did not change that much. I continued to work, perform (musically) and play as before. My medication had obviously changed and some aspects of my normal daily routine began to differ from the past years. But I was coping well, I was in an out of hospital frequently but that did not faze me as much of my life had already revolved round hospitals, clinics, veterinary surgeries and Shamans caves. As far as I was concerned, it was simply another lung condition that I had to adapt to and I failed to see the importance at that time.
However as time went on as it does, I became more and more aware of the issues relating to aspergillosis, my health declined quickly, my medication arrived by the truck load and finally I could no longer do my job. 
I was retired on medical grounds in 2008 and at the tender age of 50 (ish), I found myself on the scrap heap of humanity!

Being home all day and every day while my wife went off to work destroyed my composure. Suddenly I was no longer the `bread winner’, I no longer had a career, nor prospects or even hope for the future. So I rapidly sank into depression!
Prednisolone and Itraconazole did little to ease my situation as I began to suffer the side effects of these two delightful forms of marvellous, modern miraculous medication. Boredom set in soon after, along with tiredness, nausea, weakness and insomnia. I began to gain weight and lose interest in all about me as the disease drew away my strength and resolve as blotting paper draws ink! I felt alone, useless, sick and all male pride, ambition or independency slowly and finitely seeped away.
I knew of no one else with this disease, I had no one to seek advice from, nor comfort or reassurance. Thoughts of suicide drove me to riding my large powerful motorcycle fast, sizing up walls that I could possibly drive the motorcycle into without risking others! I was referred to a psychiatrist in response to my consultant recognising my mental state and a Counsellor as a back up. All to no avail, I sank deep into depression and even self pity, something I have never done before!

But there is always a light at the end of the tunnel. It took me about two years to come to terms with my condition, my disease and my future status, but I have. Several things helped me regain my life and interests, several people contributed also. My family continually rallied round me with support and love, my friends offered understanding and awareness of my declining health. I changed the way I looked at each day and found new hobbies and interests that enabled me to combat some of the boredom.
I was forced to sell my motorcycle unfortunately, so I bought a boat which my whole family can enjoy. Yep I know I can simply slip overboard during a bout of depression but I won’t, never liked cold water, with or without soap! I no longer sing, dance or perform on stage, I have taken up writing in stead and I still do occasionally play a musical instrument.
Support and guidance from the online Aspergillus site gave me the welcome information that I was not alone; there were many others just like me! My consultants and GP’s learnt quickly and were soon able to offer me the treatments and advice I needed, and so after a hellish time I learnt to adapt in mind and body.
By researching the disease I discovered vast amounts of information that helped me live my life as fully as my limitations would allow. I discovered much of the tiredness, weakness, depression and the general feeling of being constantly ill could be laid at the door of the medication I was consuming. This enlightenment allowed me to compensate and spend my days appropriately.
At last, four years after losing my job, my pride, my independence and the loss of confidence as a man, I can begrudgingly face the world and my future once more. I now know my limitations, refuse to surrender and often ignore them, I know where I am and where I travel in the universe, I think!

So anyone new to this disease of Aspergillus, please take heed. At first the situation appears dire, and then it becomes dire. It may appear to take eons before the bubble bursts and you re-enter the sunlight and warmth of a `normal’ life, but you will.
I have learnt to live with my fungal lodger and the baggage that accompanies him. It was not easy but life goes one, so live it the best way you can!

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by GAtherton

Coping from a carers viewpoint...

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Well then, This is a bright shining light in a VERY dark tunnel .....

Bit of Background first I suppose ....

I met my wife on our first day of school (we were 5 years old!!) She has always had Asthma & a "bad chest" over the intervening 51 years & of that we have bin married 39 of em!!! Marie (The aforementioned Wife/Partner/love of my life/soulmate/mother of my children & EVERYTHING IN THE WORLD TO ME) has steadily got worse & worse with her Asthma.

Recently She was provided with an appointment at Preston Royal Hospital to see a "Chest specialist" ...after much probing & Many Many Tests we "THINK" we have a solution to her "Problems" ...she was diagnosed in Jan 2013 as being allergic to Mold & put on Intraconazole I'm sure we can deduce from that she actually has Aspergillosis (although the Blood test are yet to be revealed) but reading the messages & stories on here & other places 99% of them mirror EXACTLY the things Marie has been going thru. What can I do???...Well, I have taken early retirement from British Gas (I was Regional Manager fer the North west area of England & Southern Scotland) ....I've taken over the Daily House duties Hoovering/dusting/polishing/ironing ect & can report that I'm told I do a "fair" job of ironing various things (Not quite worked out how to get the "Pointy bit" of the Iron into a Bra yet though!!!!!!)

Marie has never "worked" since we got married in 1974 choosing to bring up our children & be a "Housewife" .... To see her slowly decline in the amount she can do around the house has taken its toll on ME, we live not 100 yards from the beach on the south end of Morecambe Bay & living here has always been Wonderful, we would walk the dog (& the children fer that matter) for hours just enjoying the sea air & the Sunshine. the last time we did ANY of the above was over 4 years ago we felt trapped inside with Marie not able to walk any distance at all she reached a point where she couldn't even do the weekly shop so I took over the day to day running of our home ..... this caused its own problems as even though I was doing all the things Marie used to do she was forced to sit there & watch (In a "managerial" role) ..& lets face it NOBODY can "Do" things like "YOU" are used to doing them.

Depression set in & we were at each others throats more than we were talking to one another....Fortunately Marie likes her "Gardening" & as we have a "Seaside" type garden (No grass/Lawn ect more just raised beds made from Driftwood we used to pick up from the beach after the stormy weather) she was able to "potter" about with me keeping a close eye on her & point me in the direction of which plant needed attention & which didn't ect all this seemed to help give her back her independence & more over give her something to look forward to (at present she is eagerly awaiting the appearance of her Daffodils & watching her trees show the first buds of spring ect.

My point here is I think many people treat the Disease & NOT the person the appropriate drugs are obviously a MUST HAVE but they will have a significantly reduced effect if the patient is "Not in the correct frame of mind" to "See the Benefit of the drugs. A Positive mental outlook, a Goal to strive for, a "Mission to accomplish" are all of HUGE BENEFIT to ANY person who is suffering from ANY disease.

So My humble advise to ANY person reading this is to ALWAYS MAKE SURE your nearest & dearest who ARE suffering have a GOAL TO STRIVE FOR, A MISSION TO WIN, If Marie WANTS to "Try" to accomplish something I NEVER STOP HER (I probably end up doing 90% of it) but then I ALWAYS make sure she KNOWS just how much SHE HAS DONE towards it.

To use an old saying from a TV programme ............."IT WORKS FER ME" I Do Hope this has been of some help to you that have had the Patience to read this far.

All the Best Keith & Marie 

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by GAtherton

Colin

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While working in Greece in 1989 I started coughing up blood. An X ray was taken at the local hospital and I was told that I had TB. The English company I worked for flew me back to England and I went to a hospital in Oxford. Tests and more X rays were taken and I was told that although the tests were negative I would be treated for TB for six months as my X ray and symptoms suggested I had TB.

Further tests at the Oxford hospital showed that I had a possible mycetoma in the upper lobe of my right lung and that I had colonization with aspergillus and positive aspergillus precipitins. I was told (1989) that there was no treatment for aspergillus.

I felt very fit and well and returned to work. At that time I was 39 and had never smoked and always eaten healthily. In 1990/91 I gave up alcohol completely and continued to remain well although I did have occasional haemoptysis, often minor but sometimes more serious. The haemoptysis was always at night or early morning so did not interfere with my working day.

For several years I had an annual check up in Oxford (X ray and blood tests). I developed aspergilloma in my left lung but I had a very active life and felt very fit so was able to continue working.

In 2001 I had quite serious haemoptysis one morning. The bleeding stopped and then started again a couple of times. I went to the local hospital on a Greek island and was admitted for a few days. On leaving hospital I flew back to England.

My Oxford hospital arranged for me to have pulmonary embolisation (both lungs) at Hammersmith Hospital, London. I returned to work abroad. I was still quite fit and active but I gradually began to have occasional chest pain, night sweats and a very bad cough. I also lost my appetite completely, began to lose weight and began to feel less fit.

In September 2003 I had a serious haemoptysis, over five days, and went to hospital once more. I was given a blood transfusion and spent five days in the hospital. I was prescribed 200mg daily itraconazole and continued with the itraconazole on my return to England.

Itraconazole had little effect on my haemoptysis and I had another embolisation in Hammersmith Hospital in February 2004.

In 2004 I was given tranexamic acid tablets (3 x 500 mg) to take daily when I coughed up blood. I found tranexamic acid very effective for stopping my haemoptysis but only used it when I had a serious bleed.

In 2005 I asked for a referral to Wythenshawe Hospital, Manchester. My dosage of itraconazole was immediately doubled to 400mg daily but did not seem to make any difference to my haemoptysis, although it did improve my cough, so I was able to sleep better.

A scan in 2005 showed that I had developed a cyst in the lower lobe of my left lung. Scan also showed that I have ‘extensive’ bronchiectasis in my right upper lobe. Around this time it was pointed out to me that I had finger clubbing.

In February 2006 I had another embolisation at Wythenshawe Hospital.

I was found to be resistant to itraconazole and in August 2007 started to take voriconazole (400mg daily). By December 2007, a liver function blood test showed that the voriconazole was affecting my liver so the dosage was reduced to 300 mg daily. I became resistant to voriconazole within a few months. I had begun to feel fitter while on voriconazole and my haemoptysis was much improved and I was sorry to give up the voriconazole.

In August 2008, I started posaconazole (10ml twice daily) and have continued with posaconazole to the present day. I’ve had no side effects from posaconazole, have had relatively very minor episodes of haemoptysis while taking posaconazole, no haemoptysis at all for well over a year and I feel fitter than I have done for some years. For the last few years I have gradually been putting on weight.

Colin
29 September 2013

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by GAtherton

Chip Chapman

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It all started around about the age of three I think, course I was too young then to remember but my mum told me anyway. That was when I was first admitted into hospital with severe brittle asthma, and it was all down hill from there!
I was in and out of hospital like a yo-yo on elastic! Often being admitted four to five times a year. Then at the tender and innocent age of six I was sent to a special hospital in London where I stayed for the next three years!

Finally escaping at the wise old age of nine, I returned home to a world and family I didn’t know, but I adapted. My frequent trips in and out of hospital continued until I was once more carted off to an `Open Air’ boarding school at the age of eleven. Open Air schools were supposed to allow those with respiratory conditions to get the care and all the fresh air they needed to become healthy, rubbish! While there I still managed to rebound in and out of hospital, just in a different county!
At last I managed to leg it from that prison laughing called a school at the age of sixteen and continued my career as a frequent hospital respiratory patient, until I began smoking at the age of nineteen following an argument with the then girlfriend. Surprisingly my asthma improved, soon relented and became almost negligible, causing me very few problems and my hospitalisation decreased dramatically. I did still have attacks and a few hospitalisations, but less frequently over the years until I stopped have to be incarcerated at all! About 20 years of almost normal breathing!
I did stop smoking again after a few years.

I took up Martial Arts, cycling, rowing, sailing, motorcycling, fornicating, drinking, partying and even ran my own business which I eventually sold and undertook a BSc in Environmental Science and qualified as a FE/HE teacher/lecturer. I learnt music, played in bands, duets and did hundreds of solo gigs as a guitarist and singer!

From 1998 to 2003 I was enjoying my employment as a lecturer in HE Science and also Music at my local higher education establishment. But that year my department moved to another building that was still undergoing renovation as we moved in. Often I could not see someone walking towards me due to the dust in the air. Spooky! It was not long after this that I was hospitalised with a blocked and collapsed lung! 
A year passed in terrible health, asthma got the blame as I previously mentioned I have always been an asthmatic. For a whole twelve months I was on constant anti- biotics and huge doses of Prednisolone along with nebulisers and other assorted sweeties! Nothing worked!
Finally I went to my respiratory consultant and informed him forcefully that what I was suffering was not asthma! My sputum was different, my symptoms were different and none of the medication was working. To my surprise he agreed! He told me to sit down and explained that I had ABPA. Unfortunately at that time neither he nor his colleagues knew much about the disease so he asked me to research it and let him know my findings, which I did and it was that which ignited my interest in self research. I am pleased to add he and his colleagues have since learnt about ABPA and are very knowledgeable and have helped me immensely.
It became apparent that when my lung collapsed, tests were done that showed I had large amounts of aspergillus in me plus an IgE level of 12,000. But due to an administrative error, it took 12 months before he was sent the results! 
Twelve months of suffering and being on friendly terms with the local Undertaker!

Finally in 2004 I was diagnosed with Aspergillosis and the appropriate treatment began. This consisted of Itraconazole and Prednisolone medication. I was told to stop all anti-biotics immediately and switch to the anti-fungal, an improvement was evident within days!
The following years were terrible; I was in and out of hospital constantly! Finally in 2008 I was forced to give up work as I could no longer do my job, it’s hard to lecturer when you can’t breath! I also had to halt my hobby as a singer and musician, sadly I never learned to cough and wheeze in tune!

It was concluded by the `experts’ that I had most likely contracted aspergillosis during the renovation work, but this could not be medically proved so I had no claim to compensation, though my employers did treat me well and I left with happy thoughts. I most likely contracted this joyful disease due to existing lung damage from the asthma, my consultant appeared to take great pleasure in informing me that I had more chances of winning the Lottery than getting this disease. Wish I had won the Lottery instead!

During those years while still trying to work, and in the years following, I have made a study of the infamous Aspergillus fungi and its effects on the human respiratory system. I have even conducted my own research into identification, causes, triggers and symptoms, gaining some valuable knowledge along the way. Playing around with sputum and a microscope, lovely!
Today I am managing my ABPA, Asthma and Bronchiectasis with help from Itraconazole, Prednisolone, salbutamol & atrovent nebulisers, a better understanding of the disease, and a nagging wife! I am only thrown into hospital about twice a year though I do tend to still have bad bouts of asthma and/or aspergillus each month. I am not allowed to work, on pain of death by my wife, daughter, son, sister, consultant and grandson! However I am attempting to write a book, I still research my own condition and I generally try to keep busy in a possibly vain attempt to avoid going nuts!

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by GAtherton

Carol Saville

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I was born in 1939. I had my first asthma attack at the age of 3. There were not many medications then for asthma. So whenever I was breathless I was put into bed until I got better. I learned to live with breathlessness over time. I eventually grew up, got married, and had two children. Whenever I had a cold my asthma would become a problem. I was hospitalized for pneumonia right before I got pregnant with my first child. After my second child, I started going to an allergist to see if that would help with my asthma. I was given the usual tests and put on allergen shots against various things, including mold. I did not notice much difference. The doctor I was seeing believed in prednisone for asthma attacks. I gained 60 pounds that year. The asthma doctor said it was not the prednisone, I was just eating too much. This was in around 1968. At that time I checked into the side effects of prednisone and found that one of the main ones was weight gain. I then switched allergists. The new allergist did not believe in using prednisone at all. They gave me all new tests and said that mold was not one of my main allergies. I started new allergen shots. I again did not notice much change in my health.

In early June of 1976, I was exposed to a large amount of dust while hanging a banner that had been kept in someone's attic for years. I immediately started wheezing and felt very sick. I stayed sick and breathless and went to my allergist who could not seem to figure out what was wrong with me. She continued with the allergen shots but seemed unable to do anything else for me. I spent the entire summer sick and getting sicker. I tried to get my allergist to do something for me all summer without success, though she did give me various antibiotics during the whole of that time. With each new antibiotic she tried I would feel better for a short period of time, and then just got sicker.

In early September of 1976, I went to see my family internist who immediately had me xrayed (something the allergist never did). He said I had pneumonia and gave me a prescription for one more antibiotic, but said if I was not markedly better by the next day he would put me in the hospital. The next morning he hospitalized me with pneumonia. I was put in Presbyterian Hospital in San Francisco. After numerous xrays, and the fact that each xray showed I was getting worse, the pulmonologist diagnosed me with Allergic Broncho Pulmonary Aspergillosis and I was treated with high doses of prednisone. I was taken off of all antibiotics. I was in the hospital for nine days.

From September 1976 on I had various flare ups several times a year of ABPA, and was hospitalized with pneumonia many times. In 1985, I moved to the mountains in the hopes that I would have less things to be allergic to and so perhaps I could stay well longer. I only went on prednisone when I had a flare up or pneumonia. In May of 1998, I heard that there was a medication for people with aspergillus disease. I demanded that my doctor put me on Sporanox. I remained on Sporanox at 200 mg. a day for several years and found that I no longer was getting sick with anything, no colds, no pneumonias, no hospitalizations. At the end of several years my doctor and I decided to try Sporanox (itraconazole) at a lower daily dose and I was able to lower my dose to 100 mg. a day. I increase this amount to 200 mg. a day only if I feel I might be coming down with a cold. As soon as I feel I have full control, I go back to the 100 mg. a day. I have been on itraconazole from 1976 until present and will be on it for life as long as it keeps working for me.

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by GAtherton

Becky Jones

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This story is reproduced here to help raise awareness that aspergillosis is a major problem for people living with cystic fibrosis. It originally appeared on the BBC website in June 2011 Sadly Becky died a few months after her transplant from complications. We know that in the months following the transplant she lived life to the full once more and her courage was an inspiration to both doctors and patients suffering from this dreadful illness. In her memory we would salute her unfailing bravery and commitment to helping find effective treatment for chronic aspergillosis sufferers. Becky's legacy is one of hope for all chronic aspergillosis patients.

Wythenshawe Hospital's 'ground breaking' operation

A Manchester hospital has carried out a double lung transplant on a cystic fibrosis patient whose life was threatened by a fungal infection.
Dubliner Becky Jones, 20, was airlifted to Wythenshawe Hospital in late May for the operation, after spending more than a year on a waiting list.
"I'm a different person, I can breathe, I can do anything I want," she said.

Professor David Denning said: "If she didn't have a transplant she wouldn't be with us in two year's time."
The hospital said she was the first patient to have a lung transplant with multi-resistant Aspergillus and multiple fungal balls in her own lungs.

Aspergillosis affects 150,000 people a year.

Professor Denning, who is Director of the National Aspergillosis Centre which is based at the hospital, said surgeons had no option but to attempt the transplant even though it had not been tried on patients with this condition.
"It was either have a go or let her drift downwards," he said.
Becky said: "I can travel again, I can go shopping again, I can go to college or just go to lunch at the drop of a hat with my friends, which previously I would have to plan weeks in advance."

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by GAtherton

Anne's story

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What follows is a brief synopsis of Ann’s and my treatment of her aspergillus with additions when I recall them.

After many fruitless visits to our local hospital (supposed) main consultant Ann had blood tests taken in September 2006.
We always knew that she had bronchiectasis. On the 27th November 2006 we were told that there was aspergillus infection and she was put on Itraconazole for 6 weeks no further info was given to us at this time. Fast forward to appointment in September 2007 we where told that Ann had aspergillus positive precipitins in her blood test no further action re Itraconazole would need to follow up but could not do anything further.??
On 16th January 2008 the subject of surgery to remove “apcess” in left lung.
21st February after many fruitless phone calls and meeting with surgeon and his very rude registrar we were bluntly told, for the first time, that Ann had an aspergilloma in her left lung and the only option was surgery to remove it. At this point the surgeon requested that Ann be put on Voriconazole so she would have some resistence to the aspergillus during and after the operation.
On 26th February the consultant told us he would not prescribe any further antifungal medicine as aspergillus could not be managed in any way.
I put aspergillus into search engine and came up with Prof Dennings name and e-mailed him asking if surgery was the only option. He replied within hours saying not to go ahead and ask for Ann to be referred to Wythenshawe. On hearing that Ann was going for opinion at different hospital the local consultant became very petulant and washed his hands of us (thank God)
.
The offending consultant is coming to give a talk at our local Breathe Easy Group next year I intend to ask him some very embarrassing questions.
We had our first appointment on 16th May 2008. The start of a dramatic improvement in her quality of life.
We have nothing but praise for the way she was treated by the whole Aspergillus Team.

Treatment at NAC. After confirmation that Ann had CPA she was put on Itraconazole for three months this had no effect on her blood counts and x-rays remained the same. Then came a period of Voriconazole she compiled a whole page of side effects that she had from this but she carried on until Posaconazole became available. She improved dramatically and carried on taking it until she passed away.
Annie developed a fast growing cancer in her lower left lung which spread rapidly through the lung wall and into the liver.
She went into hospital on 24th June 2011 and passed away on 11th July 2011.The cancer started with pain that went from her shoulder to lower back, we at first thought it was a reccurance of frozen shoulder that she had before. The pain did not respond to painkillers and it was thought she may have some infection that also did not respond to the permanent antbiotics she took every day. Ann initially went into hospital to be given intravenous antibiotics but the X-ray and CT Scan she had on arrival had shown the cancer which had made rapid progress since the X-ray taken only a few weeks before.

12.10.2011
One thing that Ann always insisted on was that she ALWAYS had copies of all letters and reports sent to her doctor. We also had copies on CD of all her x-rays and any scans. This is invaluable if you have to go to different hospitals/consultants. It also helps,as with our so called local specialist, if there are any mistakes/comments made about consultations. We both feel that everyone should receive copies of all letters as it very difficult at a later date to remember all that has been said. After a hospital or GP visit Ann would put on to computer the notes that she and I had made. Always ask if you do not understand do not have blind faith that your doctor knows it all.
9.12.2011
I have written to local hospital regarding the treatment we received and they are going to investigate my concerns. Hopefully some good will come from this and no other patient will have the problems Annie and I had. At the very least they now know of the research going on at Manchester and will get in touch if needed.
23.02.2012
Still waiting response from the local NHS Trust. Have been told that my questions have all been sent out to the relevant consultants etc. and that they have been returned. The response is waiting to be signed off by the CEO. I hope they do not expect to give me the "brush off" as this will not happen and I will continue my fight on Ann's behalf to get some answers.

14.03.2012
I have received an answer to my complaint. Because the complaint was not made within 12 months a full investigation was not carried out as the staff involved would be unable to recall events, conversations and comments to which I had referred to. However the following paragraphs in the CEO's reply give some hope,

"I can confirm that your correspondence has been circulated to the staff concerned, so that they are aware of the concerns that you have, including the surgeon (named) and his registrar. This is on the basis of it being considered feedback, rather than a complaint for investigation and response."
"I have also asked that your wife's case be discussed at appropriate Governance Meetings to improve and increase awareness of specialist resources in Manchester and to consider and reflect upon how this improved your wife's final years"
"The complaint has now been closed as ineligible for further consideration as a result of being out of time."

Hopefully any one else at local hospital with Aspergillus precipitins will at least benefit from an enquiry to Wythenshawe as to preferred treatment.
I continue to spread the the little knowledge I have regarding aspergillus to anyone who will listen.
My best wishes to all out there who read this account.

John.

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by GAtherton