GAtherton – Page 18 – Aspergillosis Patients & Carers Support

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

Sue Hurlburt

A couple of days after the emergency surgery on 1/30/2010 to literally save my life, one of my infectious disease doctors (I had 5) asked me what I thought happened. I told her that I thought it was a "Perfect Storm" of sorts and she agreed. You may ask, what contributed to this alignment of the stars, fate or ill luck:

Chronic Illness of Systemic Lupus and Type 2 Diabetes - both autoimmune chronic diseases (however, SLE was in remission and the A1C for diabetes at the time of surgery was 6.5 - well controlled) as well as allergies including molds, but was never told the types of molds nor how to control the environment;
Stress in a high stress job at a major teaching hospital working sometimes 50-70 hours in a week, wife, mother and sister. Spending over 25 years in senior health care management positions in a hospital setting;
Lab reconstruction in our department and in the research department over my head where primates were kept - many times would come into work in the AM with debris from overnight access to floors above;
Sitting under air vent - would start to cough violently to the point of tears and losing my breath whenever it was moving air;

*Getting headaches with left sided vision flashers - was told it was "menopause" over the course of 4 months prior to home water damage with back-to-back sinus infections. I now have permanent vision loss in the left side as a result of the fungal ball and damage;

Severe water loss at my home which required me (per the insurance adjusters instructions) to work with company to inventory wet damaged goods - was never given any personal protective equipment to wear (which I found out after wards was quite important);
Many good well meaning physicians (Ear, Nose and Throat) and dentists (general and specialists) who for seven weeks kept pointing the finger at each other for ownership of the problem without doing any basic diagnostic work like blood work, CT scan, MRI, etc When they saw the lesion during a dental procedure, took pictures and still waited 2 weeks to send me or an oral surgeon. Multiple antibiotics and prednisone medications given - I mean many and that contributed in a big way to suppressing my immune system to the brink of total collapse or perhaps total collapse that allowed me to become a host.

All of this converged over the course of seven months prior to the emergency surgery of which the last seven weeks were spent quite ill. The date December 15, 2009 at 9:08 am, I awoke with the worse facial pain I have ever had. It radiated across my left cheek bone over and over again - it just would not stop and it did not until the surgery on January 30, 2010 - pain medication just would not touch it - I was told that I lived through my left upper jaw being eaten away from an invasive fungal ball along with several other flesh eating bacteria. I won't get into details here, but as a patient to have to literally beg for tests and answers to todays' world in my humble estimation is quite disrespectful. It needs to be said that if I did not, in my head and heart know that something was very wrong with me and kept advocating for myself - I surely today would be six feet underground at the cemetery in the next town over as a neighbor of the famous playright Thorton Wilder - yes, we do own a plot near Mr. Wilders' final resting place!

What did they find/do/initial outcomes:

Pathology showed invasive fungal ball that penetrated into the bone marrow - "highly suggestive of Mucor" along with two strains of actiomycoses and several other staph bacteria;
As of result of the bone loss lost the left upper jaw, left maxillary sinus and half of the left side hard pallatte;
Renal failure from Amptherican B, switched to Vfend and when Mucor was grown, switched to Posaconozole which thankfully did work; however, they tell me since the hypae was broken and there were many, I could have had aspergillus as well - they will never truly know.

*ANA's for the SLE were positive and stayed positive for over six months after surgery;
*Had surgery 1/10/11 for early stage (Ia) Uterine cancer which they thought I probably had at the time of the invasive fungal ball which makes total sense in regards to my overall general health and immune system integritity.

Bottomline, where am I today you may ask:

On long term disability working 20 hours a week in a computer oriented job in a library where although I was told I would not be around books, I am, but am dealing with the envioronment as best I can;
Had allergy testing and am allergic to aspergillus, mucor, pencillium, fusarium and several other molds;
Learning to control my home and work environments regarding daily mold exposure. That has been a work in progress, some days are better than others and I've learned what environments to avoid (barns, museums, antique stores, caves,etc.), walks in the woods (which I miss the most);

*Dealing with keeping my diabetes in control and trying to lose weight;
*Dealing with anxiety and depression while I get used to my "new normal". But, I will never get used to young children looking at me and turning away in fear when I talk - those images are always with me - I do feel and am disfigured, but always have a happy upbeat front, it gives me purpose and focus on what positives lie ahead for me!
*Trying to get $25,000 US dollars to fix my mouth so I can have false teeth/jaw to help with speech, eating and general appearance - I can't remember the last time I smiled with my teeth showing - two insurance carriers and medical/dental insurance denying coverage based on scope of services, dollar limits (total of $3K per calendar between all insurance carriers).
*Try to live eaBecome a partner with your patient - not an adversaty. It is not a question of who is right or wrong, but a greater question of what is the best, current, safe and proactive treatment for my patient to ensure a quality of life...that that is all that we want in the end...the best quality of life and a partnership with our clinicians.ch day to the fullest and give back where/when I can as thanks for the second chance of life.

However, for the record, I am so better off than many and am thankful for that and for the support of the Aspergillus Patient site, in the US we have no such program/support and many of us were struggling until we found knowledge, support and comfort from others who are meeting the same challenge to survive and I thank everyone for that...from the heart!

My wish for clinicians - Become educated in fungal related disease. Keep breast of current trends, treatment and research. Acknowledge that fungal and invasive fungal disease can and does invade the human sinuses. You have busy jobs and lives and it's easy to get on auto-pilot and narrowminded, but so much is at stake you know and fungal related disease is increasing in the general population - I am a perfect case in point.

September 2011

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by GAtherton

Steph Smith

This portrait of Steph by her mother Liz is reproduced here as one of only three recorded cases we currently know of where a healthy person has been struck down with invasive aspergillosis after an accidental exposure. We do not know if Steph accidentally inhaled a lot of aspergillus spores but it seems likely and serves to illustrate that these spores are too small to see - our best defence is to take note of the places where exposure is most likely to occur - read this leaflet for more information.

Stephs family and Lewis her partner have gone on to raise well over ten thousand pounds to help us research ways to detect aspergillosis earlier and to treat it more effectively.

Steph’s ambition, from a little girl, was to become a primary school teacher and she had strived so hard for four years for her B. Ed (Honours) Degree in Primary Teaching at Aberdeen University. A promising career which she was so suited and gifted to. She had been on her final three month placement in her former primary school in Nairn when she became unwell. At first it was thought that her symptoms were purely her asthma, and therefore this was what she was being treated for. However, on Tuesday, 31st. March, 2009, with her breathing causing her much distress, Steph was admitted to Raigmore Hospital in Inverness with a serious asthma attack and within a few days she was diagnosed as suffering from the disease known as ‘aspergillus’. This dreadful disease tragically got a hold of Steph and her immune system was unable to fight it off. The disease had become so aggressive even in that short space of time that it literally invaded her lungs and body, and antibiotics, specifically for this type of fungal infection, were ineffective in treating her.

Aspergillus is an illness, which until it touched our lives in April 2009, was unknown to us. Steph, was a beautiful young woman, in every sense of the word, both inside and out and who at the age of 21 had a tremendous life ahead of her.A vibrant, caring, thoughtful young woman with a zest for life. She was a healthy and active young woman who was an accomplished highland dancer and ballet dancer, being a former member of the Scottish Ballet Junior Associate Scheme and also a member of Ballet West. She was a Young Leader within the Girl Guides working towards her Queens Badge, a former Head Girl of Nairn Academy and as a member of the school’s Samba Band travelled to Latvia and also played clarinet in the Inverness Wind Orchestra. An extremely active young girl where the word “No” was never part of her vocabulary. She had a heart of gold, was so selfless and with her trademark ‘smile’ she was immensely popular among her peers and was everybody’s’ friend. A very mild asthmatic all her life but it was a condition which never hindered her in her activities in her all too short life. Such wonderful times lay ahead for her but tragically, just a couple of months away from graduating, she was struck down with this dreadful disease which cost her her life.

Our lives have changed beyond recognition following Steph’s untimely loss. We truly hope that through our efforts we can spare another person suffering as Steph did, and also save another family from having to go through the pain of losing someone they love to this cruel and distressing illness. A loss which goes beyond measure.

It was a tremendous privilege to be invited to attend a private Graduation Ceremony at Aberdeen University, on 7th July 2009, in Steph's honour,. where we were presented with her degree ~ B. Ed. Aegrotat Primary.

Steph Smith Appeal

Liz Smiths tribute to her daughter - Patients Support Meeting Edinburgh 2010

Lewis' tribute to Steph

Himalayan 100 mile challenge

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by GAtherton

Serena Wells

I was diagnosed back in 2006 with Invasive Aspergillosis in both the upper lobes of my lungs. I have been on and off several different Anti-Fungal's over the last 4 years.

I am currently on Noxafil after my doctor's consulted with Dr, Denning, after a very scary time in December when I was coughing up cups of blood. I had 5 arteries plugged in my lungs to stop the bleeding. I have done very well with this medication and it beats the IV medication Caspofungin I was on for almost three years.

Thanks to Dr. Denning for his expertise in the field without it and the kindness he has shown we were not sure what medication to try next and for how long. I have a great respect for all the doctor's that have helped in my care over the last few years as they are very caring and concerned doctor's with compassion many seek.

I feel blessed to of been living in Vermont when I was diagnosed and found a great team of doctor's to care for me and help my family through all the trying times.

Thanks to everyone on this group and ours for all the support you have shown.

Stay Strong
Serena

Aspergillosis Patients Support Group

Aspergillus Association of America

I am the Founder/Executive Director of the Aspergillus Association Of America. We are a non-profit organization located in Vermont,USA. We recently celebrated our 1st Anniversary back in June 2010. Thank you to all that have supported our organization during this time.

We give many thanks to Graham and the team in the UK for all of their wonderful support they have given to the thousands of people who suffer from all forms of Aspergillosis. Without their support and knowledge we would all be feeling very alone.

Thanks to all of you who have shown support to all that have joined and helped to make someones day brighter and given them hope in their times of need. We all need each other.

Stay Strong
Serena Wells

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by GAtherton

Roberta Bentley

I was 10 yrs of age with asthma, not as bad as my brother, but parents sent me to asthma clinic in switzerland. our clothes kept in damp cellar. came home after 6 weeks,having lost 2 stone (28 lbs). mum took me to gp who said "dont fuss".

Mum then took me to middlesex hospital where they kept me for 4 months in children's section. they said it wasn't pneumonia, wasn't TB, it was UNKNOWN disease, this in 1953. Gradually worse, when i was 24 taken to brompton hospital in london where they diagnosed aspergillosis. now known as ABPA. Still with Brompton, although my prof did not tell me about Itracanozole, but a dr in usa said I wasnt treated well at Brompton, i should be on itra. When i asked my gp, she laughed, "you dont need it". found out she is in charge of money at surgery, but asked the Brompton, luckily the new head of dept put me on it 11 years ago.

My regime every day, is pd, postural drainage, as suggested 40 years ago at Brompton. Without pd I would be unable to breathe. I also for 21 years go to a gym 3 or 4 times week.

Roberta (Bentley)December 2011

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by GAtherton

Peter K

March 2009

A case of surgical removal of an aspergilloma.

History
Treatment
Considering operation
Operation
Post Operation

1. History
In 1974, I was diagnosed with a large pneumathorax, a collapsed right lung. Attempts to inflate it failed and after several weeks in hospital, with a vacuum pump attached, I was then transferred to the Copenhagen University hospital. Here, I underwent an operation that ended up in rather a mess. It appeared that my blood was hesitant to coagulate, and over a week I was re-operated four times, received much blood and ended up in a respirator where I spent two weeks while the internal bleeding slowly came to an end.

The recovery period was long. After three months I went back to work, but it was more than a year before I was physically back to where I had been.

One thing I did not know – the surgery had left a small cavity, about 27 cm in diameter, in my upper right lung lope. Apart from another spontaneous pneumathorax in my left lung, which this time was successfully fixed by another open thorax surgery in 1986, I had no symptoms to speak of for a long time. I went back to exercising, travelled and worked hard with long hours. It was not until the summer of 2004, that I received the first signs that something was not quite as it should be.

2. Treatment
I was working in California at the time, and in the late summer of 2004 I developed what I and my GP thought was a seasonal allergy. I coughed, producing greenish thick sputum. It got worse, and the colour changed slowly to brownish. Then, on Christmas day of 2004 I had my first haemoptysis. It came spontaneously; my mouth filled with blood and I had to go to the bathroom and cough up fresh blood for a few minutes. Then it wore off.

My wife and I went to the emergency reception at our local hospital, where I had another haemoptysis while waiting to be seen by a doctor. After that I was sent home and asked to see my GP the next morning. However, during

the night I had another two incidents, went again to the hospital, and this time I was admitted – to isolation in a room with elevated air pressure. When nurses came in, or my wife came in, they had to wear masks. The indication, of course, was TB. Lab tests, however, turned out to be negative, and after a few days people no longer wore protective gear when seeing me. I was given heavy doses of antibiotics intravenously for several days, and then sent home.

Things went well throughout January 2005, but then, in February, I had another spontaneous incident as I was walking down the street. This time I went straight to the pulmologist who had seen me at the hospital, and he said “it’s a long shot, but let us test for Aspergillus”. It turned out to be positive, and the diagnosis “Aspergilloma” was derived. Aspergillus Fumigatus, it was. The fungus ball was sitting in the small cavity I had in the upper right lobe. Such cavities usually come from infections like TB, which I had never had. But all the messing with my thorax and my right lung in 1974 must have left the cavity there.

I was 65 then and had been considering retirement or semi retirement for some time. My wife and I then took the decision; I left my job in California and we went back to our native Denmark, from where I continued working as a consultant and advisor , on drastically reduced hours, but travelling internationally. I signed up as an outpatient at the pulmonary infection department at a large hospital in Hillerød, north of Copenhagen. I was put on a long term mix of antibiotics and itraconazole, and a year later, in spring 2006, it really looked as if I had got rid of the infection. I was taken off medication. But late in 2006, I started coughing up red sputum and was put on a daily long term dose of itraconazole. In March 2007, I had another incident of haemoptysis, and throughout the year I had two or three other incidents. In the autumn of 2007 I travelled to Manchester, England, to consult professor Denning. He would, he said, normally have suggested surgical removal of the aspergilloma, but due to scarring from my messy lung surgery many years ago, it was not advisable. So instead, he recommended embolization if the haemoptysis’ got worse.

Indeed, an operation had been discussed during my consultations at the Hillerød hospital, but the idea was abandoned due to the presumed high risk.

The itraconazole “maintenance treatment” continued into 2008, but in the late summer the frequency of haemoptysis increased. In August, for example, I had them almost every night.

3. Considering operation
At this time I decided to consult a well known thorax surgeon at the university Hospital in Odense, Denmark. The purpose of this was to get a better understanding on my part about how he would carry out such a procedure, if he should do it. He had prepared himself well and explained how he would suggest a “keyhole” operation, performed by himself and a

colleague, to remove the entire lobe in which the aspergilloma was sitting. He even showed me a video recording of a similar removal of a lobe with a cancer tumor (with his patient’s permission).

Back in Hillerød I told the pulmologist I had been seeing for a long time, about my visit to Odense. We concluded that, in spite of the risk, it was best to have this operation done, as the long term prognosis looked a bit sinister. So, on my request, he referred me to the hospital in Odense.

4. Operation
In November 2008 I was admitted to the hospital in Odense. The operation took five hours, and the old problem with my blood being slow to coagulate arose. Special drugs, now available, were used to stop the bleeding, and eventually my waiting family was told that the operation had been successful. Meaning, that the lobe with the aspergilloma had been removed in whole and without any damage. I did, however, develop a serious bleeding stomach (duodenum) ulcer due to stress from the surgery, and lost a considerable amount of blood that way – which had to be replaced.

The cavity, it appeared, had developed a hard, almost bony, wall, but fungal filaments had actually penetrated it. These filaments were found to be dead, however, probably due to the Itraconazole maintenance doses; but I was later informed that this had been “the eleventh hour”, i.e. the infection could have turned invasive if I had waited any longer.

5. Post Operation
It is a normal procedure to have several hoses draining the thorax cavity over the first few days after the operation. Samples were taken from the drains, and no Aspergillus was found. However, blood tests taken a month later, in January, showed Aspergillus antibodies. A CT scan revealed nothing unexpected. But blood samples did indeed suggest that the fungus was still there, a rather disappointing conclusion.

However, a later CT scan and blood tests, in March 2009, showed that – apart from the missing lope – everything was normal, and the level of Aspergillus antibodies had almost shrunk to zero. The doctor’s opinion is that the first analysis showed a reaction to Aspergillus which would be found after many big surgeries – though normally not checked for. And that there is no fungus left in the Thorax after the removal of the lope.

Peter, April 22nd 2009

Post Scriptum November 23rd 2011

It has now been three years since the surgery. Over the first two years I had quarterly blood tests, xrays and consultations at Hillerød Hospital. This frequency is now down to twice a year. The last tests revealed no antibodies at all, and I am leading a normal life with no restrictions. I haven’t smoked since I was 25, but I eat normally and varied, and I drink alcohol regularly,

mostly wine with food. I lost weight during and after the operation, but it is now back to normal for my height . At 72 now, I continue to engage in several physical outdoor activities , and also travel quite often; mostly for pleasure, but at times for business.

As time passes I grow more and more confident that I am free of the infection – and…consider myself lucky that I made the right choice. I owe thanks to the surgeon and doctors I have seen during this “ordeal”. Apart from being professionally competent, they also demonstrated a readiness to discuss all the details and various options with me, enabling me to understand my situation and make the decision. I am also tremendously thankful to my wife Gudrun, who supported me throughout, without a moment’s hesitation.

Peter

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by GAtherton