GAtherton

WHO WANTS TO LIVE FOREVER? by Elizabeth Hutton

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Good old Freddie Mercury classic - 'hitting the nail on the head' brilliantly!  The one sure thing in life is that we're all going to die - we're all headed in the same direction - and yet it's a subject most of us prefer not to think about or discuss.  Having faced imminent death ‘head on’ already anyway, I don’t have a problem with this at all – in fact, I’m probably better prepared due to my experience.  Nor do many other people, judging by the many advertisements for pre-paid funeral plans – it seems that many of us are now less ‘squeamish’ and being more practical.  Surely, it must be quite re-assuring to know that everything is in place and there is little for others to worry about, particularly financially.

Unfortunately, since my various diagnoses some eighteen months ago, this has been more to the forefront of my thoughts.  As I live alone, the main concern for me is that when it does happen, someone else will be left with the planning and arrangements.  Also, a consideration is that indications show that costs of funerals continue to rise at an alarming rate.

So, in an attempt to alleviate the above, I decided to start the process of planning for the eventuality - starting with comparing costs of pre-paid funeral plans on line, and received several brochures.  I did let two of those closest to me know that I would pass on details to them, once decisions had been taken (knowing that there would be quite a few decisions to be made!).  What’s all this about - ‘quality’ and ‘high quality’ coffins?  What does it matter?  When you’re gone, you’re gone – and they’re only either placed in the ground, or incinerated.  Not a bad business to be in, when you think about it – there’s always going to be the demand for services.

Whilst considering these, I recalled that when I was given the worst diagnosis, I had given serious consideration to a one-way ticket to Switzerland and now re-considered this, as there doesn't appear to be a definite prognosis for ABPA.  At best, I guess I may just go on for X number of years as I am now - the worst scenario could be that it progresses to the chronic form - and then die!  The worry being the in-between chronic stage and dying - and the knowledge that many of the drugs do become fungal-resistant.  Happy days - not!  I then made some enquiries of Dignitas - which turns out to be another expensive 'do', but it’s important to know that there is this option if necessary.

I briefly outlined my dilemma to my close friend and colleague, Martin, saying - "What if I purchase a pre-paid Funeral Plan, only later to decide on an assisted suicide?"  He promptly replied that I could always raffle the Funeral Plan - it may cover the cost of the trip to Switzerland!

Decisions, decisions.  I must say that the whole process (whichever way) does seem a bit of a swindle!  Then I read an article on the 'Moneywise' website entitled 'Death - the final rip-off' - confirming my thoughts.  Interestingly, it mentions donating one's body to research, therefore no costs involved – www.hta.gov.uk - (I have already made arrangements for my organs to be donated) - more 'food for thought'!  It also makes mention of a chap who 'haggled' with the funeral directors over funerals for relatives and managed to achieve a 10% reduction - twice.    This I really like - it appeals to my love of bargaining and underlines to me that there must be a huge profit-margin here.  I don’t suppose many people would have thought of bargaining, as the funeral providers will be used to those who are perhaps in a fragile state, in shock, mourning, and with a massive ‘to do’ list, so are usually very compliant.

According to ‘Funeralzone’:

“The cost of a funeral varies depending on your location, the circumstance of the death and your requirements for the funeral. The average cost of a burial funeral is £4,136 and the average cost of a cremation funeral is £3,214 (according to the Royal London National Funeral Cost Index Report 2016). This will, of course, vary depending on specific choices and circumstances.

These costs can be separated into three categories:

• Funeral director fees
• Third-party costs paid by the funeral director (for example the costs of cremation or burial, gravesites, transport, venue booking, ceremony costs)
• Local authority fees”

I do like to keep a sense of perspective and to see things from all angles, so another alternative - I'd be quite happy (!) to be buried at the bottom of my beloved garden, but this may be just a tad off-putting to future prospective buyers!  Who knows - I may be spending my days abroad when the time comes, which could then scupper all plans?!

‘Oops, I did it again’ – sorry, Britney – couldn’t resist!

Ultimately for me, the strongest contender seems to be to make a ‘Living Will’ (see Living Will – Patients Association) for my ‘nearest and dearest’ outlining my wishes regarding such issues as resuscitation or otherwise, and when to ‘accidentally’ trip over and un-plug life-support.  Then, put aside an amount of money to cover costs of an inexpensive (but pretty!) funeral, less, at least 10% (!) and a much more generous amount for a good old 'knees up' / Wake.  Priorities are so important, don't you think?

So, if I can set my mind to planning this, I can then 'put it away' and get on with the far more important matter of living!  The only other major item is my Will, followed by minimizing my wardrobe and sorting my knicker-drawer – then I’m good to go!

‘Always look on the bright side of life …  diddum, diddum, diddum, diddum, diddum …!’

One other concern is – God forbid – that I should at some point have to move to a care home.  Apart from being at the mercy of others, there is also the huge financial implication.  There is the option of setting up a Trust, in order to avoid ones’ home being sold to pay for fees, but Saga warns “Beware of any company or scheme that claims to protect your home or assets from being sold if you go into care by placing them in trust.  Local authorities are increasingly wise to these type of schemes, with teams in place to ensure residents are not using them to get out of paying rising care costs.”

I’d be very interested hear if anyone has any suggestions or advice (obviously, apart from ensuring, insofar as possible) that savings/assets will cover this?  How anyone can ensure they have sufficient funds to plan for this is beyond me – if only we knew how long we have left, it would certainly simplify the problems!  Who can afford to live forever?!

Currently, the only way for me (as with most everybody else) is to hope against hope that I’ll be able to continue happily in my own home, ‘With a little help from my friends’ - right to the end.

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by GAtherton

‘I’M STILL STANDING – (ME ‘N ELTON!) by Elizabeth Hutton

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… And Breathing! Reasons to be cheerful – thanks to Derby Royal Hospital I finally was given the correct diagnosis and, importantly, excellent treatment from the team of Consultants in the Respiratory Clinic, which means my breathing is the best it’s ever been!  After All This Time!

Problem is – everything else seems to be going wrong!  As the wonderful team at Royal Derby had successfully removed the fungal ball (covering about a third of my lung) and ‘dampened down’ my allergic reaction to spores (no more plugs blocking my bronchi), I fully expected to be back to ‘my normal’.  Didn’t happen – so, considered that as my condition had become critical, it may take quite some time for recovery and exercised patience – but it’s now over twelve months since commencement of treatment.

The fatigue continues, despite balancing keeping myself active with pacing myself, (light) exercise, healthy diet, and intake of numerous vitamins.  I was told at my last appointment that this was not likely to be a symptom (or result) of ABPA but, to my mind, it seems too coincidental.  Having now read up on this, it does appear to be a symptom that many with the condition suffer from – and the Consultants I am seeing are respiratory experts, so this may be outside of their ‘realm’.  Mainly in order to discount this being as a result of another condition, I requested a thyroid test, along with my usual blood tests and the results have been returned satisfactory.  So, I guess I shall have to continue to pace myself and accept the changes.  As I can no longer take care of my fruit shrubs and need to reduce garden maintenance, I’ve now had them removed and the bottom of the garden gravelled.

Asthma or Aspergillosis?

Another reason to be cheerful is my otherwise healthy genes, which have given me the strength to endure all the years without diagnosis / treatment!  Bottom line is, though, if you can’t breathe, little else matters.

Since my teens, I have been told that I have asthma – and this was a question put to me when ABPA was suspected – saying there is a link between diagnosed asthma sufferers and aspergillosis.  Many of the articles I have read support this view.  However, I’ve always doubted that I ever had asthma (the ‘symptoms’ were sporadic and the prescribed inhalers didn’t do much for me) – and now I am convinced of it!  There was never any diagnostic test to prove the case, merely a GP saying that my breathing difficulties were caused by asthma.  I do vaguely remember blowing into a bit of plastic tube, which supposedly measures strength of breath, but I don’t think this could really be called an effective diagnostic tool!

This leads me to believe that the label of ‘asthma’ may be given too freely and that condition, therefore, over-diagnosed - and that had I (and possibly many others) had the opportunity of further, early, investigation, the true diagnosis may have been reached many years before the condition became critical.  So, my laypersons’ advice to those who consider themselves to possibly be at risk of a condition other than asthma, is to seek further investigation.  The earlier a correct diagnosis is made, the less risk of serious and potentially fatal damage to the lungs.

My Love / Hate Relationship with Steroids:

I absolutely love steroids – I felt almost immediate positive results and, after six months high dosage, the fungal ball in my lungs had disappeared (leaving only minimal scarring) – and almost all other symptoms disappeared.  What’s not to love?  ….

Of course, I read all the possible side-effects, which included risk of glaucoma and cataracts, but had no choice in taking the medication.  For many years my eyesight has remained unchanged.  However, last week I had my annual check and, although my eyesight remains unchanged – yes, you’ve guessed it – I have the start of cataracts on both eyes and first indications of glaucoma (both conditions shown on the scan)!  On my optician’s advice (due to my family history of glaucoma, use of steroids and scan indications), I now pay just £6.00 per month for any number of scans throughout the year (should I notice any difference or have concerns), in order to monitor the situation.  At this stage, no surgery or medication is required.  Just have to ‘keep an eye on it’!

Feeling like a true survivor ……

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by GAtherton

EVERY BREATH YOU TAKE … (Apologies to ‘The Police’ and ‘Sting’) by

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Ok – so, this is my first attempt at blogging!  It will probably be best to report on my own experiences and progress with ABPA, and also to bring in accounts/ views of other sufferers of this condition and other types of Aspergillosis.  The latter two will be sourced from the Aspergillosis Support Group for patients and carers – nacpatients.org.uk

My reason for sending ‘my story’ to Talkhealth (rather than to only the Aspergillosis website) was in an attempt to reach those unfortunates who have yet to be diagnosed and, of course GPs, as personally I have suffered these symptoms for twenty to twenty-five years (if not all my life!).  I also know of others in the Group who have had similar experiences.  So, I’m really pleased to have this further opportunity.  This condition is referred to as ‘rare’ and I don’t dispute that per se, but based on my own experience and that of others, I consider it may be less rare and rather - under-diagnosed.  When I described the symptoms as being ‘flu-like, with constant coughing, etc., on reflection, it was a somewhat under-estimated account, particularly in later years, as the fungal ball continued to grow in my lung. Having experienced influenza, bronchitis, pleurisy and pneumonia (the condition left me ‘open’ to every possible virus), in my experience, the effects are far worse than any/all of these.

I’ll be Watching You …          

On my diagnosis being confirmed, and as there is no cure for ABPA, I was advised that I would be continually monitored by Royal Derby Hospital for the rest of my life – the plan being for six-weekly consultations.  I was very fortunate to respond really well to the six months of steroid treatment as, had this not been the case, then I would have had to take other anti-fungal medications which, apparently, have even more serious side effects.  I was again very fortunate in that I was able to ‘taper off’ the medications without any adverse effects, and now take steroids by inhaler twice daily.  The consultants were equally pleased and my monitoring was reduced to three-monthly visits.  As one appointment was made for 9.00 am (impossible for me on account of the distance involved), my follow-up appointment was delayed until six months. 

At my last consultation in May, again they were very pleased with progress, as I had by now been off steroid tablets for six months - so much so, that it was suggested that I could either be discharged, or have annual check-ups.  Obviously, I was delighted that I’d done so well that discharge could be considered, but the delight very quickly turned to total panic, as the Royal Derby has been/ is my ‘life-line’ and I have complete confidence in the team – so, annual check-ups it is - providing I continue to do well.  From life-long monitoring to suggestion of discharge in one year?  Should my condition deteriorate, the only option is to go through my surgery and for them to contact the hospital.  The GP who sought investigation works just a few half-days per week, so should I fall ill outside of her contracted hours, I feel I shall be in a very vulnerable position.

As I understand it, it appears that the medication has ‘dumbed down’ my allergic overreaction to spores and that the inhaled steroids are keeping open my airways.  So, I’m hoping that I’ll have two to three years in remission, failing contracting any viruses.  Of course, there’s no guarantees and we are all different

Every Step You Take ….     

Following previous ‘bouts’, I had always ‘bounced back’ (perhaps not ‘bounced’, but eventually returned to ‘my normal’) – this time I haven’t.  I’ve reported several times on my tiredness / fatigue symptoms (particularly following the least exertion) and difficulty walking any distance (legs feeling like dead weights), but I’m advised that it is doubtful that this is related to ABPA, and it’s suggested I see a GP.  I have also had three incidents of falling down (not tripping or fainting) just so weak that I fall.  Probably because of my experiences, I fear I’ll be told there’s a name for it but again no cure, so meanwhile, in the interest of expediency, I’ve named it myself – Falling Down Syndrome (FDS)!  As with all my strange symptoms, it can strike at any time, so I’m finding it difficult to plan things, as it’s not just some good days, some bad – it changes within minutes!

Every Move You Make …               

My most recent fall was in the bedroom, when I started to fall and, in a misguided attempt at a soft landing on the bed, did a sterling pirouette (unfortunately with only upper half of body) crashed into the television table, the television almost went through the window and -  I crash landed on the floor!  Had it ‘gone viral’ I may have made a fortune!  So - massive bruises to my upper right arm and the following day, I realised that the half-pirouette had caused back injury, exacerbating walking difficulties.  So I now take a fold-up walking stick when out, in case I feel weak and there’s nowhere to sit or lean, and have actually used it twice recently.  It had such a positive effect on people (standing immediately to let me sit down, etc.) that we’ve decided it’s not a walking stick, but a magic wand!!

Oh Can’t You See – I Belong To Me ….

Members of the support group all appear to have very differing levels of symptoms and, therefore, treatments.  However, some are very generous in sharing experiences and knowledge, and I acted on the very helpful information regarding house mites not being partial to wool, investing in a new bed (mattress half wool), wool duvet and ‘anti-allergy’ pillows – not sure how they can be termed ‘anti-allergy’, as the manufacturers may not know about us!  All good – my sleeping is much better and I have another reason to be glad I’m single, as some who have partners have mentioned that they sleep separately because of the nocturnal disturbances this condition causes!

Another item of discussion that I related to was mention of how we are perceived, which has been a bit of a concern to me also – I think having ‘my story’ circulated has possibly been of (un-looked for) help.  Of course, I don’t expect everyone to understand my strange condition, as I have some difficulty myself!

I’m still steering clear of gardening as much as I can – and am often told by friends that I mustn’t garden (for sure, disturbed soil, rotten leaves, composts, and places with mould or dust, for example, London underground, building sites, etc. are definitely to be avoided) – but I think what they’re not quite getting is the fact that spores are airborne, so there’s no avoiding them completely – it’s every breath I take!

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by GAtherton

My Story: When I was dying....

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I shouldn't imagine there are many people who are still here to be able to tell a tale with the above title!

Background:

For many years I suffered with periods of dreadful ‘flu-like symptoms, unable to stop coughing, night sweats and exhaustion – and was consistently treated with antibiotics and antihistamines (I am an allergic person – to animals, dust, mites and stings, etc.) and had been previously diagnosed with asthma. At times I would cough up brown mucus plugs (as I now know they are called) but was unaware of their significance.

My latest episode was around March 2015 and was very similar in intensity to some previous experiences, with constant pain in my right lung. Following several weeks endurance, I took an initial course of antibiotics to no avail. I waited a few more weeks, but the illness was by now completely debilitating. Then one of the GPs at my surgery, who is very thorough and caring, prescribed a further different course of antibiotics and, after examination, suggested that if there was no improvement, I should have an x-ray. I had never been given the opportunity of an x-ray or any further investigation previously.

There was no improvement, so I returned to the surgery, but there was no available appointment to see the same GP again. I was advised that I now had no infection, but it was noted that x-ray had been suggested and the forms were provided, with the advice that an appointment/ results could take up to six weeks. I was feeling so very ill and told him I could hardly breathe and that I was wheezing, and I suggested salbutamol inhaler may be helpful in the meantime (as this had given some relief on other occasions), but he responded by saying we should wait for the results. Once again, antihistamines were prescribed.

As it transpired, I was able to get the x-ray appointment quickly at Queens Medical Hospital, Nottingham, at end of May, and a very kind radiographer had the results through the very next day. The GP who had suggested x-ray rang me with the results and advised that the image had shown a ‘mass’ on my right lung, which would require further investigation – and that the next steps would be fast-tracked. She went through the various possibilities – and we agreed that, as I had not lost my appetite, nor lost weight, it was not very likely to be cancer. Following discussion I said it could just be ‘gunge’ – apologies for the ‘medic speak’! She had clearly listened to my observations of the appointment with the other GP, as she rang back later to say she had arranged for salbutamol to be prescribed to me, in order to relieve my wheezing.

Fast-Tracking Begins:

The next step was a speedily arranged PET/CT scan at Nottingham City Hospital at the beginning of June. Getting to these appointments was extremely difficult, as I was so ill and extremely exhausted, with months of no sleep – whilst travelling I was constantly coughing, so much so that the bouts were causing vomiting. Another appointment was made for two weeks later for the results at Royal Derby Hospital. I am a single lady and went alone for the results. The Consultant advised that he had examined the scan, that I had a tumour at the base of my right lung, which had “been there a very long time” - and that he and his team were unsure at this stage whether or not they could operate! As you can imagine, I was in total shock, but was able to think through the fact that I did not have the main symptoms of weight and appetite loss - and asked to see the scan. Very unpleasant – but I was still wondering how he knew this was cancerous (and not just gunge!), until I saw the ‘tentacles’ stemming from the tumour – and, of course, I also bowed to his very superior knowledge.

In discussion I mentioned the high fevers and strange symptoms and on examination, he advised that I was “still full of infection” and prescribed extremely strong antibiotics. He questioned my levels of fitness (very good up until this latest ‘episode’) and whether I was still doing everything for myself – Yes (and for everybody else!). He advised that I would need to have a further scan and a bronchoscopy prior to decision on whether there could be surgery. I discovered later, on receiving my medical notes, that the lung was also partially collapsed. The specialist nurse who was present during the meeting made the necessary appointments for me – and even wrote them in my diary. To this day, there are parts of the journey home that I just cannot remember! I do remember vomiting again!

At this point, I did let my friends know the situation and spent the next couple of weeks deciding where to have surgery – and whether this would be a good thing, if it were possible. A trip to Switzerland was beginning to look extremely inviting! The thought of possible imminent death does make one re-evaluate everything – and I had the constant feeling of “But, I haven’t started yet!” I’m ok with the fact of being dead – we’re all going in the same direction, but the manner of dying is very scary! I also had to decide where I would be post-surgery (should it take place) and many of my friends offered to have me stay at their homes to recuperate. A friend in Liverpool, who is a radiologist, researched the best surgeons there on my behalf. I made ‘to do’ lists mentally – sort finances, plan funeral, etc. I received the most touching cards, letters and emails of support and prayers (Sikh, Muslim, Catholic, Jewish, Church of England, etc.) – all denominations were welcomed! My darling niece, Jan, currently living in Pakistan, arranged to fly home in order to spend a few days with me and provided lots of emotional and practical support. My very good friends visited, bringing gifts and my dear friend, Sam, came laden with lots of healthy food – they were all wonderful and amazing.

Me, centre, friends Maureen (l) and Maura (r) – Judith in mirror, taking photograph – June 2015

Following the next scan and (disastrous) bronchoscopy, a further appointment was made for results two weeks later. This was to find out whether surgery would be possible - and a very close friend, Colleen, accompanied me.

Another Shock – Another Diagnosis:

The Consultant’s first question to me was “Are you a gardener?” – I replied that yes, I was a very heavy-duty gardener (one of my passions). The next question was “Do you have a composter?” – I explained that I did have, but no longer. He also asked if I had coughed up brown ‘cauliflower’ shaped plugs – Yes! My friend and I could not understand where these questions were leading – but he then explained that he and his team had discussed the case and considered that I appeared to have the classic signs of Allergic Broncho Pulmonary Aspergillosis (ABPA), a rare condition brought on by allergic reaction to spores – although this did not discount the earlier diagnosis of a tumour – there could be a dual pathology. What brilliant, Ace Medical Detectives! It must be noted that the ‘copycat tumour’ caused by ABPA in the lungs does show on images exactly like a tumour.

I was to have an urgent blood test, was given a prescription of high dosage steroid treatment and further antibiotics – and advised not to commence the medication until I heard the results. With confirmation of ABPA, I would then be under the care of Royal Derby Hospital for the rest of my life. My friend and I were ecstatic – although not ‘out of the woods’ – there was now much more hope, even at this stage – the power of prayer!

Bloods taken, prescription drugs in hand – I arrived home and just a few hours later my niece arrived – happy days! My Consultant rang me that evening to say I had tested positive for ABPA, so much so that it was “off the scale” (greater than 5,000) and aspergillus specific IgE of 59, which is a grade 5 level and extremely high. I was to commence to treatment immediately. As the bronchoscopy had been a failure (on my part – still acute infection at the time) this would have to be repeated, as it would be too risky to wait another six weeks, this time probably under general anaesthetic – which also has its’ risks. He also reminded me that the original diagnosis could not at this stage be discounted and that a further scan would be necessary following six weeks on medication.

Almost immediately commencing the medications, I began to feel relief and was able to manage some sleep – heaven! I still had another six weeks before the next scan, so planned special things to look forward to – lunch with friends, hairdresser’s appointments, manicure sessions and re-joined my local spa for swimming and Jacuzzi – and employed a gardener. I also had my kitchen re-modelled, as I needed to keep myself busy, both physically and mentally. All this time I was well supported by my very good friends and as time passed and I appeared to be responding well to the treatment, I was becoming more confident. During this time my Consultant rang to say, having discussed with the team, they had decided not to put me through another bronchoscopy, but to wait until the next scan, so they too were, obviously, feeling more confident. Also during this time I researched information on ABPA, discovering that there is no cure, but that, hopefully, it could be managed. There are varying types and levels of the condition and, had the steroid treatment not been successful, other drugs are available, but with even more serious side-effects. As the spores are airborne, there is really no avoiding them completely.

Aspergillus & Aspergillosis Website:

“Aspergillosis is an infection caused by the fungus Aspergillus. Aspergillosis describes a large number of diseases involving both infection and growth of fungus as well as allergic responses. Aspergillosis can occur in a variety of organs, both in humans and animals. The most common sites of infection are the respiratory apparatus (lungs, sinuses) and these infections can be:

Invasive (e.g. Invasive Pulmonary Aspergillosis - IPA)

Non-invasive (e.g. Allergic Pulmonary Aspergillosis - ABPA)

Chronic pulmonary and aspergilloma (e.g chronic cavitary, semi- invasive)

Severe asthma with fungal sensitisation (SAFS)”

I could now breathe without pain in my lung and I was not wheezing nor coughing and I was sleeping, although still very tired, sometimes to the point of exhaustion. Six weeks later, I had the next scan and then, whilst waiting for the appointment for the results, found difficulty remaining so positive – at times doubts came creeping in.

Colleen and I went together for the results (as she accompanies me on all appointments). We did not have time to sit down in the consulting room before the Consultant happily advised us “There is only good news!” The latest scan had shown that the ‘copycat tumour’ had disappeared, leaving only minimal scarring. So – I’m no longer dying (well not in the immediate future, anyway)! I was to continue with the treatment on a reducing regime, which I did for a total of six months, with six-weekly IgE level checks and consultations. Following this, I now take inhaled steroids (Clenil Modulite) twice daily. Having responded so well to treatment, it was then decided that this could be reduced to three-monthly appointments. It is possible that I may progress to the next stage, Chronic Aspergillosis, but there does not appear to be a definitive prognosis – just a “wait and watch approach”.

Currently I would say my breathing is the best it has been for decades and at my last consultation it was indicated that the Respiratory Clinic may not be the most appropriate place for me, and that it may be better for me to be seen by an Allergy Specialist.

Living With ABPA:

I am not allowed house-plants and fortunately, my ground floor is not carpeted, so I am able to keep it dust / mite free. As this is an immuno-deficient disease, I take Vitamin C daily, also I am now seriously deficient in Vitamin D, so take that as a supplement, and to counteract the exhaustion/fatigue, I have started taking Vitamin B100. I do have other ‘strange’ symptoms, which I never know whether these are related to the disease or not, but I guess everyone with a specific illness experiences this. I am currently in remission, but should there be any deterioration, my surgery is to contact Derby Hospital immediately. I am often told how well I look (even when I was at my worst health-wise), which does make me feel good, but I think it’s important to remember that looking well, does not equal being well! Due to the steroid treatment I have gained over a stone-and-a-half in weight, which is not easy to lose, but I do take gentle exercise by swimming. I am retired, but continue with my voluntary work with the Agency with which I was employed in Nottingham and with another charity in Derby (although find the need to pace myself) – keeps me busy, I thoroughly enjoy it – and it keeps my mind off my own worries!

My garden – I have to wear a HEPA filter mask when gardening – but don’t have the energy anyway!

I have joined the Aspergillosis Support Group, which is part of the patient support services of the National Aspergillosis Centre at Wythenshawe Hospital (UHSM) Manchester, and has direct access to specialists in many of the fields involved in aspergillosis research and treatment and which is very informative about the condition and provides monthly meetings at Manchester Hospital. Another member, Stuart Armstrong, who is keen to raise awareness, had his story in the Daily Mail on 15 February 2016. 

Read more: www.dailymail.co.uk/health/

I consider that it is important to raise awareness of this serious disease, particularly amongst GPs, as a simple blood test can confirm diagnosis and treatment can commence early. If left untreated, it can cause serious and potentially fatal damage to the lungs. Another member is ‘testing’ wool-filled pillows and duvets as, apparently, house-mites do not like wool – looks like it may be a worthwhile investment!

I survived …. thanks to a caring GP who decided on investigation, the wonderful team at Royal Derby Hospital, the support of my very dear friends, some very influential guardian angels, and an inner strength I wasn’t aware I possessed! My new motto: “You only live twice ….”

Mostly I remain positive in my outlook but, at times, do succumb to being a little ‘down’ – always remembering that no-one has perfect health and that most people have some type of illness with which to deal. I always remind myself that at least I do now have a diagnosis (better than the original one) and could not be in safer hands than the brilliant team of consultants at Royal Derby Hospital.

February 2016

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by GAtherton