GAtherton – Page 17 – Aspergillosis Patients & Carers Support

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

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....

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.

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

Listen to 2015 Hippocrates Prize Open winners

The Hippocrates Prize is an annual award for poetry and medicine with a closing date of 31st January.

About her poem A Technique for Operating on the Past, Maya said: "There is something pleasantly elliptical about the fact that a neuroscientist relies on the very instrument that is the subject of his study. I had long wanted to write a poem about Gr.T. Popa, my great-grandfather, after whom the Medical University in Iași, Romania, is named.

He worked on neuro-morphology in the 1930s and 40s, but his remarkable research was ultimately cut short in light of his anti-fascist, and anti-communist affiliations. That he was forced into hiding and died of a routine ailment while escaping the communists still seems a dark irony. In a way, writing this poem felt like a letter to him, an acknowledgement of that unfairness.”

Poet Pascale Petit from France and now living in London was awarded the £1000 Second Prize for In the Giraffe House, with the £500 Third Prize going to teacher Catherine Ayres from Northumberland for Making Love to LINAC.

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by GAtherton

Listen to Hippocrates Young Poet Prize for Poetry & Medicine 2015

Parisa said: "I wrote the poem 'Intraocular Pressure' after a visit to the optometrist revealed that my eyes' intraocular pressures were on the higher side of "normal". Inspired by the idea of certain diseases as time bombs, my poem is the result of both my personal fears and my attempt to extrapolate the future implications and physical effects of the condition if it worsened.”

The other shortlisted young poets were US poets Alex Greenberg from New York City for Dusting and Alexandra Spensley from Ohio for Geography of a Bone.

Judge Simon Rae said "Judging the entries for the Young Poets Award has been both exciting and moving. The standard has been high, with both winners and commended poets producing strong, unflinching poems which will remain long in the memory."

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by GAtherton

Listen to all the winning Hippocrates NHS poems

The Hippocrates Prize is an annual award for poetry and medicine with a closing date of 31st January.

Kate Compston said: "the poem “Lovely young consultant charms my husband” was prompted by the visit, 13 years ago, of the very attractive and talented psycho-geriatrician, who came to our home to give us the news of my husband Malcolm’s diagnosis. Brain scans had indicated beyond reasonable doubt that he had Dementia with Lewy Bodies. What stayed with me for years afterwards was the tension I could see being played out within her, between professional scientific excitement about something unusual, and her humanity.

The Second Prize of £1000 went to former GP Ann Lilian Jay from West Wales for “Night Visit”, with the £500 Third Prize shared between tutor Carole Bromley from York for “On Hearing for the First Time” and radiologist Rowena Warwick from Buckinghamshire for “Mrs Noone”.

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by GAtherton

Panthera by Parthenia M. Hicks

I imagine your birthmyth:

earth humid, steaming with gases,
plasma rising, cells undivided,
blood floating homeless.
It was the first day, not the sixth,
before darkness became night
and night became ebony or jet.
Your unformed jaguar-leopard presence
hung like a mysterious seed in the round,
empty ball of earth,
like air inside a balloon,
waiting to fill up the future land:
Africa, Asia Minor, China, and India,
North and South America, Mexico.
More moon than sun in your cells,
more sprinter than long distance runner,
over five hundred voluntary muscles framing
your future lore.
Did you, with your binocular vision,
“Argos of a Thousand Eyes,”
guarding the heifer IO who was loved by Zeus,
foresee shotguns and rifles,
runway furs and amulets with claws,
the garden paved, the forest looted,
pilfered and burned?
Did you, who would be written in the Abodazara,
as surname for the family of Joseph,
performing a healing in the name of Jesus ben Panther,
know, on that first day,
when your claws dug into humus
and you married the lunar darkness
that you would die first in North America?
When you imagined me by the river,
why didn’t you circle and attack from behind,
bite through the temporal bones of my heathen skull,
murder or shapeshift before the sixth day could be written?

©Parthenia M. Hicks

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by GAtherton

Dear Doctor, I have Read your Play BY LORD BYRON (GEORGE GORDON)

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Dear Doctor, I have read your play,
Which is a good one in its way,
Purges the eyes, and moves the bowels,
And drenches handkerchiefs like towels
With tears that, in a flux of grief,
Afford hysterical relief
To shatter'd nerves and quicken'd pulses,
Which your catastrophe convulses.
I like your moral and machinery;
Your plot, too, has such scope for scenery!
Your dialogue is apt and smart;
The play's concoction full of art;
Your hero raves, your heroine cries,
All stab, and everybody dies;
In short, your tragedy would be
The very thing to hear and see;
And for a piece of publication,
If I decline on this occasion,
It is not that I am not sensible
To merits in themselves ostensible,
But—and I grieve to speak it—plays
Are drugs—mere drugs, Sir, nowadays.
I had a heavy loss by Manuel —
Too lucky if it prove not annual—
And Sotheby, with his damn'd Orestes
(Which, by the way, the old bore's best is),
Has lain so very long on hand
That I despair of all demand;
I've advertis'd—but see my books,
Or only watch my shopman's looks;
Still Ivan, Ina and such lumber
My back-shop glut, my shelves encumber.
There's Byron too, who once did better,
Has sent me—folded in a letter—
A sort of—it's no more a drama
Than Darnley, Ivan or Kehama:
So alter'd since last year his pen is,
I think he's lost his wits at Venice,
Or drain'd his brains away as stallion
To some dark-eyed and warm Italian;
In short, Sir, what with one and t'other,
I dare not venture on another.
I write in haste; excuse each blunder;
The coaches through the street so thunder!
My room's so full; we've Gifford here
Reading MSS with Hookham Frere,
Pronouncing on the nouns and particles
Of some of our forthcoming articles,
The Quarterly—ah, Sir, if you
Had but the genius to review!
A smart critique upon St. Helena,
Or if you only would but tell in a
Short compass what—but, to resume;
As I was saying, Sir, the room—
The room's so full of wits and bards,
Crabbes, Campbells, Crokers, Freres and Wards,
And others, neither bards nor wits—
My humble tenement admits
All persons in the dress of Gent.,
From Mr. Hammond to Dog Dent.
A party dines with me today,
All clever men who make their way:
Crabbe, Malcolm, Hamilton and Chantrey
Are all partakers of my pantry.
They're at this moment in discussion
On poor De Sta{:e}l's late dissolution.
Her book, they say, was in advance—
Pray Heaven she tell the truth of France!
'Tis said she certainly was married
To Rocca, and had twice miscarried,
No—not miscarried, I opine—
But brought to bed at forty nine.
Some say she died a Papist; some
Are of opinion that's a hum;
I don't know that—the fellow, Schlegel,
Was very likely to inveigle
A dying person in compunction
To try the extremity of unction.
But peace be with her! for a woman
Her talents surely were uncommon.
Her publisher (and public too)
The hour of her demise may rue,
For never more within his shop he—
Pray—was she not interr'd at Coppet?
Thus run our time and tongues away;
But, to return, Sir, to your play;
Sorry, Sir, but I cannot deal,
Unless 'twere acted by O'Neill.
My hands are full—my head so busy,
I'm almost dead—and always dizzy;
And so, with endless truth and hurry,
Dear Doctor, I am yours,

JOHN MURRAY

Originally published by the Poetry Foundation

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by GAtherton

Finding Poetry in Illness: A reader’s journey of self-transformation from disease to ease.

Finding Poetry in Illness
Photo by C.J.W. Johson, 1870

by GAtherton

The Poetry Ward A doctor dispenses poems to patients and medical students.

BY DANIELLE OFRI

Toxic sock syndrome. That’s the first thing we noticed when we entered the hospital room. For those gentle readers who are not familiar with such sensory assault, toxic sock syndrome is the clinical term for the rank odor that accompanies damp, fetid feet that have seen more street time than shower time. The patient in front of us displayed all the cardinal signs of a chronic Bellevue Hospital alcoholic: cantankerous mood, matted, stringy hair, stirring halitosis, a W.C. Fields nose, and bone-rattling tremors of the fingers and tongue. He was not especially happy to see our group—one attending physician, two residents, four interns, and six medical students—bunched around his bed, all attired in crisp white coats and equally crisp attitudes.

After the usual line of questioning about blackouts, seizures, cirrhosis, ulcers, and other maladies of the bottle, I pulled a tattered photocopy out of my pocket. “Sir,” I said, “would you mind if I shared a poem with you?”

“A poem?”

“Sure,” I said, trying to sound casual. While I’d subjected interns and students to poetry, I hadn’t yet tried reading poems with patients, mainly because most of our patients don’t speak English. But I’d been carrying a copy of Jack Coulehan’s poem “I’m Gonna Slap Those Doctors” in my pocket for several weeks now, waiting for just the right English-speaking alcoholic who might be amenable.
Because the rosy condition
makes my nose bumpy and big
and I give them the crap they deserve
they write me off as a boozer
and snow me with drugs. Like I’m gonna
go wild and green bugs are gonna
crawl on me and I’m gonna tear out
their goddamn precious IV.
I haven’t had a drink in a year
but those slick bastards cross their arms
and talk about sodium. They come with
their noses crunched up like my room
is purgatory and they’re the
goddamn angels doing a bit
of social work . . .
Gradually the patient’s face changed. He was no longer surly. He was attentive, amused. When I finished he said, “You know, Doc, you got it right. So many docs treat you like you’re something the cat dragged in. But we’re all the same peons here on this earth.” He pulled himself a little higher in his bed. “You know, I used to like to read. Books and all. Back in grade school I liked English the best. Stories, poems, all that shit. My favorite subject.”

I wondered if my medical team would’ve thought about this malodorous patient as a person who’d once had a favorite subject at school. For the duration of his stay at the hospital, I noticed the medical team treated him much more like a “citizen” and less like an annoyance.

In my years as an attending physician at Bellevue Hospital, one thing I’ve noticed about the interns, residents, and medical students I supervise is that they tend to be starved. Famished. They will stuff comestibles of all sorts into their mouths whenever the opportunity arises. At first I offered chips or pretzels to help them stave off starvation, but I quickly realized that it had been weeks, in some cases months, since any of them had consumed fresh produce, so I stopped at the fruit stand on the way to work each morning to stock up on bananas, grapes, strawberries, and mini-carrots. Within minutes of my depositing this bounty at the doctors’ station, only a few lonely grapes would be left.

These physicians-in-training weren’t only starved for fresh food. On the first day of their month’s rotation, I asked them to introduce themselves and tell the group about the most recent book they’d read (Harrison’s Principles of Internal Medicine did not count). Usually the blood drained from their faces.

It was obvious I needed to attend to the full spectrum of their nutritional needs. From then on, each day’s repository of fruit was accompanied by 20 copies of a poem. The sign taped to the table read (with arrows usually but not always pointing in the appropriate direction): “Fruit of the Day; Poem of the Day; Please Take One of Each.”

Thus began our tradition of Post-call Poetry, sometimes nicknamed Literary Rounds. Poetry is not the easiest sell on the medical wards. Even after years of offering poetry to my residents, I still experience a momentary lapse of confidence every time. Will they think I am certifiable? Will they deign to cut me one iota of slack, understanding the calculus that every minute “wasted” translates directly to one minute less of sleep? Will I be branded one of “those” attendings, the kind not sporting quite enough clinical tomatoes in their cerebral salad?

Nevertheless, I soldier on. “Okay, guys, poem of the day.” I press the daily verse into hands already burdened with charts, X rays, clipboards, stool samples, and EKGs. “Any volunteers to read?” If you ever need to silence a crowd, this is surely the way to do it. And so I read the poem aloud, flicking my eyes over the page every line or two to catch any surreptitious glances at lab reports or scut lists.

Given the demands of time, energy, and responsibility on my audience, I am granted only momentary patience. Poems read in these situations need to be short, accessible, and somehow relevant. I don’t always pick poems that relate to medicine, though I do try to highlight poems from the Bellevue Literary Review (BLR) to raise the students’ awareness that literature can be written in a hospital. The Department of Medicine at New York University has published BLR since 2001, providing a forum for poetry, fiction, and nonfiction about health and healing. Despite a burgeoning interest in such literature (the review receives thousands of submissions each year), popular twice-yearly on-site readings, and tireless promotion from our editorial staff, the vast majority of our students and staff remain impressively unaware of the literary efforts afoot in their own medical center. Many are unaware of the existence of literary magazines in general, so I hand out free copies to the medical and nursing staff. Sometimes I feel like I’m competing with the drug reps who stalk the same halls with free pens, mugs, and notepads.

In addition to poets from our literary review, I employ modern, “accessible” poets, such as Lucille Clifton, David Lehman, William Carlos Williams, Sharon Olds, and Donald Hall.

To open the minds of students and staff about the side effects of medication, I usually offer Nikki Moustaki’s BLR poem, “Writing Poems on Antidepressants.” I want to give them a sense that what we value in a medication (doesn’t cause hyperglycemia or urinary retention) may not be what patients value.
Each day offers some little irony or a dream
or a blind albino woman
sitting next to you on the train
with eyelashes like white silk threads
attached like broom-straw to her one closed eye
as she taps her cane against the window
and you, the poet on antidepressants,
thinks: look at that, hmmm, interesting.
Did I buy dog food? Here’s my stop.
Another poem may offer gentle insight into the subtle symptoms of aphasia, as well as to the isolation and loneliness of aphasic patients. Halvard Johnson’s poem “Ambulance,” also from BLR, begins with the epigraph “This restaurant has a fine ambulance.”
What my friend, of course, must have
meant was that this restoration
had a fine ambience, but some of
his words in the rain came unstruck from time to thyme,
as patents from one ward sometimes wonder into an udder,
where they almost flit in, though
God knows no one knows their names,
where their faces seem almost familiar
until looked at closely . . .
When I receive my evaluations at the end of each rotation, I am reminded that rarely is anyone neutral about poetry. Some students and interns are delighted for the change of pace, both in topic and in tone. Others are downright angry over the waste of time. Perhaps this divergence of opinion is triggered by the relative “uselessness” of poetry. After all, in comparison to angioplasty, radiation therapy, and heart-lung machines, poetry can seem a little useless on the hospital ward. Some students find such uselessness liberating, allowing them to flex underused muscles of creativity. Others may find it threatening, since it can be seen as a seditious attack on the empirical nature of science.

At the end of each month, I get up the gumption to present a four-page poem. This requires bribery on a grander scale, so I temporarily relax my insistence on healthy food and present a double-fudge chocolate-mousse cake, studded with die-sized cubes of dark chocolate. I plunge into John Stone’s “Gaudeamus Igitur.” Written for a medical school commencement by a cardiologist-poet, the poem is appropriate for the end of an intense month-long rotation before our group is scattered to the far-flung reaches of the hospital.

Stone borrowed the form of his poem from Jubilate Agno, by the 18th-century poet Christopher Smart, in which each line begins with the word “For” or “Let.” What captures my students’ attention, as they wolf down their cake, is the blend of clinical references (letting them know they are in the know) and pithy lines that perfectly capture their mixed emotions about being doctors.
For this is the day you know too little
against the day when you will know too much.
. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
For you will look smart and feel ignorant
and the patient will not know which day it is for you
and you will pretend to be smart out of ignorance
For you must fear ignorance more than cyanosis . . .

Those lines bring knowing nods and uncomfortable squirms. They have all—we have all—been in this position. The fear of not knowing enough is constant in medicine. I point out the following passage about the arts to remind them that there are critical sources of inspiration beyond the New England Journal of Medicine.
For there will be the arts
and some will call them
soft data
whereas in fact they are the hard data
by which our lives are lived
For everyone comes to the arts too late
For you can be trained to listen only for the oboe
out of the whole orchestra
For you may need to strain to hear the voice of the patient
in the thin reed of his crying
For you will learn to see most acutely out of
the corner of your eye
to hear best with your inner ear
I repeat that last line: “For you will learn to see most acutely out of / the corner of your eye / to hear best with your inner ear.” “This is how poets think,” I say. “Here is an example of how physicians can learn from poets.”

And then I end our time together with the passage below. I remind them that medicine (and life) consists of far more than what we learn in medical school. That medicine is fully integrated into the world at large, and that being a physician means engaging all aspects of life to the fullest because, in the end, we doctors are in the same lifeboat as our patients
For this is the end of examinations
For this is the beginning of testing
For Death will give the final examination
and everyone will pass.

Originally Published: July 10, 2006 by The Poetry Foundation

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by GAtherton

Welcome to my Aspergillosis page!

I have been suffering from ABPA for almost 4 years now. My first experience with ABPA led me to the hospital with pleurecy, sepsis & pneumonia. They did not know at that time that I had ABPA, and thought instead that I had Microbacterium Avium Complex. For another 2 years I went undiagnosed and saw many different doctors and had a plethera of tests done. Finally, I saw the right pulmonologist who diagnosed me immediately. I really felt that I was on my way to recovery after that! Unfortuantely, it has been an uphill battle since that time. First, they started me on antifungals and prednisone which seemed to work. After about 4 months I was taken off of the medication and 4 months after that was back on. While some patients can get off their medications, I was obviously not one of them. After going back on the medications, it never really cleared my ABPA up like it did the first time. So, I went off to Nation al Jewish Health to get some "real" answers! For 2 weeks I went through extensive testing and they found I had reflux (like most of us), asthma (like many of us) and possible ABPA but they didn't think that was what was causing my problems. What!!!! They took me off my medications for a second time. When I came home, my pulmolnoligist assured me that the reflux is definitely a problem, but the ABPA is the major culprit and I needed to be back on the meds. So, now, after 5 months of being back on meds, we are trying to get everything "under control" and the diminish the amount of infections I get. Right now I am averaging about every month with a new infection. It is very frustrating to say the least. I am also taking Tobi to try and keep the infections down... but I don't think it's working yet! I am really hoping to get to a point where my infections are every 2 or 3 months but with bronchiectisis, it makes me more suseptible to bacteria.

What is hard about this disease is many fold. First, it is so rare that people really don't know what to say to you about it. No one has heard of it. Luckily this wonderful on line support system is available to spew your thoughts to! Second, you really have to adjust your perceived reality as you thought it would be. I was an extremely active person with my kids- biking, walking, hiking, etc. They now know that mom can't do those things because her lungs don't work. It was very sad for me to wrap my head around this new reality but once I did I could move forward with a different one. No hiking or biking, but maybe walking when I can, going to the movies, the beach, camping, relaxing, reading, cooking, etc. It's important to find something fulfilling even if it's something different than you had planned initially. Finally, the ups and downs of how you feel each day. It's like a yo-yo! One day you may feel well, and the next you are tired and can't breathe or you have a new infection. It's hard to make future plans too because you just don't know how you may feel. But, you have to! You have to assume you will feel good later on so you don't stay home and wallow in self pity! It's important to surround yourself with people who understand or have empathy for your illness. It's also important to know that you are ill and have limitations. Millions of people have millions of diseases and carry on and so can you. I'm very fortunate to have a wonderful & understanding husband and kids who care about how mom is feeling. They are helpful around the house and lift things for me when I can't do it myself. I am hoping that raising kids in this manner will make them more sympathetic as they get older. I know you feel like I do, why me???? But, no one can answer that- and if not ABPA it could certainly be something else! Hang in there :)

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by GAtherton