Another brief one: Ngaire has had three good nights in a row and is more used to the uncomfortable BiPAP mask, being able to sleep well with it.
It seems that the drugs that she has been on for the pulmonary hypertension may finally be beginning to work. Her breathing has become easier on the BIPAP and she requires far less oxygen in the mix to maintain good levels in her blood. She will have another echocardiogram soon to verify that the drugs are working.
This period now is about positioning. We are getting good nutrients into her body; now her heart needs to rest in trust for the days ahead. It seems increasingly unlikely that she will be home before transplant, so peace and rest of spirit are what she needs. Oh….and some new lungs.

Just a brief update this time:

Ngaire has been in ICU for two days.
Because she was unable to maintain adequate oxygen saturation – even on the maximum level available – they have put her on the BIPAP machine (Bi-level Positive Air Pressure). This forces oxygen into the lungs and holds them open, so that they can absorb more. It is a marvelous invention , though very uncomfortable as it needs to seal around the nose and mouth. The mask Ngaire is wearing as I write is not all that different to a deep-sea diver’s mask, sealing entirely around the perimeter of her face.
On this machine, she is able to maintain oxygen saturation of 90% +. Along with this, her heart rate has reduced considerably to around 100. After the oxygen deprivation incident of the other night, her heart rate was over 140 for a full day.
At this stage, she is holding her own, and we are hoping that this will allow time for the hypertension meds to kick in, thereby helping her breathing even more; all of this with a view to keeping her as fit as possible to receive her donor lungs.
We understand that she is a priority case and that the search is now Australia-wide.
Please pray that a match can be found soon. This situation, while positive, cannot last indefinitely. Thank you.

Not many of us can really imagine what losing the ability to breathe would be like. We know what it’s like to be caught underwater, desperate for air, or to have exerted ourselves to the point where we have to gasp to fill our lungs; but always we end with the ability to draw deeply and be satisfied. It is the middle of the night – as good a time to write as any. I am watching Ngaire’s heart-rate and oxygen saturation monitors at Sydney Adventist Hospital at 3.06 a.m.. It has taken an hour to get her saturation up from 69 to 83 – an acceptable level according to her specialist.
At least she has been sleeping for most of it. The last eight days in here, have been a roller coaster: one night in emergency followed by two nights in ICU to stabilize her, then up to the ward. At no time has she been able to leave her bed.
The drugs that she has been given for pulmonary hypertension will apparently take 7-10 days to start working. Until then it is a balancing act of oxygen and effort; the effort in eating, moving in bed, coughing, all take their toll.
Last Friday night, Ngaire didn’t sleep at all and, come Saturday morning, she was in a pit of exhaustion. Just maintaining levels in the lows 80’s was virtually impossible; she couldn’t move, speak or even open her eyes. She had a cough that defied description with a wheeze that sounded like a discordant string section tuning.
I thought that I was losing her. I talked to doctors, but wheels seemed to move slowly. It was mid-afternoon before the diagnosis that the fluids they had been giving her to keep her hydrated were filling her lungs. All fluids were stopped and a diuretic injection administered. Within a couple of hours she had passed copious amounts and was miraculously alive again.
A nebuliser has been part of her treatment, to counteract the drying effect of breathing through a face mask and to keep her mucous membranes moist. On Monday night, I didn’t notice as the nurse swapped the oxygen mask for the nebuliser, that there was only air, not oxygen flowing through it. Only after a couple of minutes, as Ngaire took on the pallor and strange vacancy of one whose oxygen levels were plummeting, that I yelled at the nurse asking if there was oxygen coming through the nebuliser. She suddenly realised what was happening, reattached the oxygen, and hit the alarm, but not before my precious one began to shake into unconsciousness with oxygen saturation of just 40%. It is an image that I will never get out of my head.
Within moments, the room was full of people – 8 at least – all focussed on Ngaire and her desperate condition.
Slowly she came back, and I don’t think I have ever been more grateful for anything.
This waiting game is brutal but each day we are a little bit closer to the finish line. Weeks like this, however, remind us that there is the not insignificant issue of time, looking to run us down before we get there. We are praying that God will be the lollipop man at the crossing, so that Ngaire can reach safety in time.

The Book of Psalms is full of poems of those who cried out about the struggles, injustices and pain that they endured. Some were “full of faith”, others full of unanswered questions. I am encouraged that God has, in the Bible, the stories and thought streams of those who doubted. Whether we believe in God or not, are angry or frustrated with him, destitute, faithless or despairing – he is no less a loving God, whatever that may look like from the perspective of us who dwell in the temporal lands. This I know: he is the great affirmer of life and we put our trust in him.

As an addendum, Ngaire has been moved back to ICU today, where she will receive more intense oxygen therapy.

Oxygen saturation is a measure of how much oxygen the haemoglobin molecules in the body are carrying. It’s usually shown as a percentage of the maximum it could carry. The blood carries oxygen to every part of our bodies, bringing the life-giving oxygen to every cell, so that we can keep functioning.

For the average fit, healthy person, the oxygen saturation is usually between 98 and 100%. This means that, just like a fire, we have energy to burn; in fact, the oxygen in our blood enables the cells to break the chemical bonds within them so as to create energy.

However, just like in one of those glass-fronted fireplaces, when the oxygen levels fall, the fire goes from raging, to a slow burn, and then out completely.

In hospital, if a patient is on oxygen, all the alarms start ringing if their saturation falls below 90%. Over the last year, which has seen Ngaire go full-time onto supplemental oxygen, she has generally been able to keep her resting levels in the low to mid-90’s. Of course, when any movement happens and the blood-oxygen is burned for energy, the levels drop drastically.

Usually when this happens, the heart rate increases because the body recognises that it doesn’t have enough oxygen so, rather than pass out, it compensates by pumping blood faster in order to supply the cells with what oxygen it does have. Over an extended period of time this can have a damaging effect on the heart itself because, as a muscle, it needs oxygen too; so trying to pump harder with reduced oxygen leads to a weakened, sometimes-enlarged heart.

Another obvious effect is that, as the body needs oxygen desperately, it tries to both conserve what it has, and get more. Blood supply is diverted away from extremities and the digestive system in order to supply vital organs. This means that Ngaire feels the cold easily and rarely feels like eating – it takes a lot of oxygen to digest food. Consequently she has lost a lot of weight and is now 46 kg.

Gasping for air becomes a part of life, but this doesn’t help, as shallow gasps lead to hyper-ventilation, which only increases carbon dioxide in the blood.

Her resting oxygen saturation now, even with supplemental oxygen, is in the mid-80’s. With even the slightest exertion – walking a few metres, even just rolling over in bed – it will plummet into the 60’s. At this level it is almost impossible to remain conscious for long and requires planned, ordered breathing to slowly get her back to “normal”.

It has been getting much more difficult over the last few weeks and we are confronting what has previously been a “no-go” zone. What does life look like beyond this stage? We have heard of patients waiting for a transplant who need to go into hospital on life support; when does that happen? Will she need a constant companion? If so, when? And all of this while the “other stuff of life” goes on around in us and in our family: work, school, driving lessons, future plans, girlfriends, birthdays and bills.

“A day at a time” has become such a hackneyed phrase, but, it is our reality now. The media bubble of all the hedonistic pleasures that should be streaming through our front door at this time of life, burst long ago. Instead, we are learning deeper lessons about love, commitment, fear, friendship, support, eternity and in the midst of the pain and confusion, there is something deeply good going on. I just wish we could work out what it is….

The trees in my neighbourhood provide a stunning display at this time of year; they also speak of the rhythms that we dwell within, yet so rarely acknowledge in our busy lives….

Liquidambar

I have seen the colours of New England in the fall:

The pink granite of Eastern Maine, the rouge,

Blush and shiver of forest and lake.

I have crossed the White Mountains of New Hampshire

And stood speechless before the vast palette of the

Never-ending valleys of Vermont.

I have seen the liquidambar in my driveway –

Absorbed the nuances of its reds, golds and myriad nameless

Hues, transforming in the gentle evening breeze,

The breeze that makes me wrap my arms around myself

But not go inside; I want to know

The breeze that rides the cold this tree shares with me,

The cold and earlier twilight that rings the bell

And gives green permission to dress up for a final

Flourish before the plunge and mulch,

Before the sleep that slows the sap

And calls a halt to signs of life,

And life hidden, whispers from deep to deep.

This wisdom, I imbibe not from the grand glory

Of mountains and valleys beyond comparison,

Whose beauty’s power is awe

But from the liquidambar in my driveway whose

Majesty yearly waxes and wanes;

And, in the waning, I feel my mortality.

I have no poetry this time; instead it is timely that I relate something of our family’s road. I guess I’m committing to documenting the journey, so here goes:

Waiting

“Honey, did your oxygen come out?”

At three-thirty a.m. I’d been brought back to the waking realm by the sounds of Ngaire, my wife, gasping.

“No…..just…..rolled….over.” She responded between the deep hauls for air.

I stirred myself to get up and check the oxygen machine, which we kept in the next room because its relentless filtering of air to trap near-pure oxygen was too noisy to sleep with.

Connected to her by a thin tube of plastic, the machine was fine, though I turned it from its “sleeping position” of three litres per minute to the maximum of five, then returned to the bedroom to ponder as my wife, severely oxygen depleted after the simple act of turning in bed, was gradually regaining her equilibrium. T he stark reality of her plight – our plight – is never more confronting than in the middle of the night.

This has been a journey of years. Pulmonary Fibrosis – a condition of unknown cause that gradually causes lung tissue to harden and become useless – has been in our family’s vocabulary for some thirteen years.

That, in itself, is something of a miracle; the average life expectancy for someone with IPF (Idiopathic Pulmonary Fibrosis) is between two and four years. One lady whom we met recently, was totally oxygen dependent, yet had only been diagnosed some four months previously; at her rate of decline, she didn’t have long without a transplant. Thirteen years had brought us to the point where now, without a transplant, Ngaire herself clearly didn’t have long. On this the doctors agreed, and so our lung specialist put us in touch with the heart/lung transplant unit at St Vincent’s Hospital in Sydney.

Beginning the journey towards a lung transplant is quite a series of hurdles in itself. There are over thirty separate tests that have to be undertaken – some quite invasive, others requiring hospitalisation – in order to ascertain whether or not you are suitable for receiving a set of donor lungs. These tests are referred to as the “work-up”.

When the transplant takes place, the body’s immune system is shut down so as to give the new organs their best chance of “taking” to their new environment. Of course, if there is any existing infection, undiagnosed cancer, or weakness in the body when the immune system is shut down, that “anomaly” could then run rampant and kill the patient. This would not only be a tragedy, but it would also mean that the donor lungs, which are not all that plentiful, would also be wasted. This is why the testing process has to be exhaustive, to ensure that the lungs have the best chance of survival.

The work-up would be a daunting prospect for a fit person; but being oxygen dependent to the point where every minimal expenditure of energy leaves you totally breathless, makes it a gargantuan task. After six months, Ngaire had completed the tests; all that remained was the final meeting with the surgeon so that he may give her the tick of approval.

He said that having a lung transplant was like exchanging one disease for another; he also talked statistics and what to expect. For instance, he said that ten years after transplant – if you’re fortunate enough to be around that long – sixty percent of patients will have to deal with some kind of cancer – mostly skin lesions, but sometimes worse. The skin specialist that Ngaire saw during the work-up informed her that one of the greatest killers of transplant patients was melanoma. This is because the immuno-suppressant drugs, required to stop the body from rejecting the organs, compromise the body’s ability to defend itself from those things that a normal immune system would have little trouble keeping at bay.

The doctor also said that after five years, nine out of ten patients could expect to suffer from high blood pressure. The list goes on, from ongoing nausea, to compromised liver and kidney function, to the point where many who receive lung transplants, further down the track require transplants of other organs because of the damage wrought by the ongoing drug regime.

But you know what? The prospect of a lung transplant, though exceptionally daunting, has provided hope in a situation that was hope-less. Although Ngaire’s decline has been gradual for the most part and she has had lengthy periods almost symptom-free, a miracle has not eventuated, so a transplant could quite literally mean life versus death. I for one, am deeply grateful for that.

I am also grateful for the fact that Ngaire has lived to this point, able to see our sons grow up into beautiful young men, where we once cried together that she may not see them reach high school. We pray that this transplant may see her become a loving and loved grandmother, with the gift of life that she may continue to spread to others, as is her way.

With the work-up complete, Ngaire’s place on the transplant list is imminent. The story begins…..

I have a good friend who worked for years in a hospice. Her work was valuable and profound, comforting people at the very ends of their lives. The subject came up about the inordinate number of people who came to the hospice and had no family or friends – who spent these last days entirely alone, often in pain, grief and desperation.

This poem is a challenge to me, because I feel that once you look into something, to a degree, you become responsible to do what you are able.

In Memoriam

There are echoes in these silent rooms,

Of lives half-lived, of days half-spent

Second-guessing, or waiting

For someone who won’t show.

Even now, opposite the woman who,

Surrounded by grandchildren weeping

Goodbyes, the wizened man

In desperate silence hopes

That his estranged son may

Learn to forgive, that the grandchild

He has never met may hear

And want to come, that the man

At the club may wonder

At his absence, that one other than

The nurses, who have just learned

His name, may come because they

Have no agenda other than him.

Being made “comfortable”

Merely forestalls the moment that

He hopes is the end, for the greater

Terror looms as desperation

For eternity.

Curtains drawn create the image

Of his world, his withered cheek

Cradling a tear as a clinical touch

Adjusts his drip and brushes his arm.

Her distant-but-kindly look

Screams at his desolation;

He squeezes his eyes shut tight

And whimpers for release, for love,

For oneness with someone, for hope.

Moist eyes look up at her, her touch

Now resting on his arm,

As her welling eyes speak pity

And, wretchedly grateful,

He again receives second best.

I am a student of history, particularly Ancient History. A lot of people don’t understand that, or think it boring. Yet many of the same people, when I read them a poem or monologue which delves into the historical character will say, “Wow, that comes alive. I never realised that.”

History speaks to us when we allow ourselves to consider that the people who made history, were just like us, many with the same fears, self-doubt, arrogance, bravado, whatever….

It’s the same as the rest of our lives: when we look at the facts, we make judgements through our own filters. When we consider the motives of an individual, or more to the point, the factors that might influence someone to do what they do, then not only do we become more tolerant and caring, but their journey has the opportunity of meaning something to us.

Here is a poem about Abraham, the “father of the Jews”, who was also, of course, the “father of the Arabs”. Be that as it may, he was a man whose journey is chronicled because he happened to believe a promise from God, that God would bless him and make him a blessing, that his descendants would outnumber the grains of sand, the stars in the sky.

The poem is set at the end of his life and there are references to events that, if you wish to explore, you can find in the book of Genesis, Chapters 12 – 25. It is full of the mysterious, bizarre and difficult to believe – like many of our lives.

Abraham at Sunset

Mt Moriah

On this mount

I sacrificed my will

Yet fought to subdue it

Al my life since.

Through these branches.

Rays pierce my eye’s colour,

Depth and purpose, pure and unfettered

Where once struggled God’s provision.

And this broken altar’s long shadow

Separates me from the fractures

Of my past:

Vague pillars and rash, rogue words

In the deepening twilight behind.

Though ancient by any reckoning but his,

I feel my youth here,

This air, driven by his breath: my lungs

Fill with promise afresh,

And that which I believe –

My credit, my glory –

Is dwarfed by he who is faithful.

The golden light scans

And finds me flawed but looking

Full-face into its beauty,

For I do not know see life as

A struggle for superlatives by which

I may be known,

But it is to serve well,

Walk in peace,

Strive for fidelity of heart,

Doubt with integrity,

Think no other beneath you,

Cling to the one

Who calls you to greatness,

Yet never think yourself great.

But a maxim without a heartbeat

Is a sword without a champion.

So I would that those who follow

Not just be my flesh, my blood,

For generations hence, in name,

In tribe and in nation;

But spirit, wisdom, grace

And power incarnate that would grow

Beyond what I have learned and lived,

And so, make the promise a blessing unending.

Stars renew his vow

As this day’s last light drains

And i, with upturned face

Will close my eyes without fear.

The one place, once a year

Where another Universe visits

And spreads abroad its

Aberrant aesthetic:

From food beyond price

And taste to produce

Displayed as if raided from

An eccentric giant’s

Greengrocery.

Humans as diverse:

Densely-tattooed, sideshow

Carnies fidget behind foul mouths

And hidden-but-obviously-unpleasant

Agendas, cohabiting with small, kind

And generous, old women

Thick with perms and mauve

‘Midst the CWA tea and scones.

Weather: changeable, so that the sweater

From home is peeled off as

The sun has its last hurrah

Before dozing through the winter months.

Hapless children are nose-ring-tugged

By marketing pied-pipers to showbags full

Of the Emperor’s New Clothes.

(As a child, I remember these had

substance for free, where the power

of goodwill exceeded

the making of a buck).

But all pales before the Woodchop

Mighty men with arms like

Footballers’ legs,

And blades so honed they could

Plane a child’s single hair.

The ritual of preparation

Enthrals as arcane, velvet-lined cases

Yawn with precious payload,

And hands like troll’s hands raise

Sacred tools to kiss them with

The pocket whetstone, worn small and aged

Through millennia of service.

One by one, their names are called,

Cases closed and acclamation

Acknowledged with a nod or

Unobtrusive gesture.

Furthest from the caller –

The one to watch – whose handicap,

The greatest, is already a trophy

Worn with pride.

He stands, axe resting on boot while

Five foes hew and sweat,

From first to last,

Chips flying, blades glinting

As he waits for his call.

Then, stepping to the block,

He is an archer with bow drawn,

Assuming the position:

Legs braced, back taut, arms extended.

In the second before the call comes,

The blade begins its awesome arc,

Plunging deep into hardwood

As if it were a melon.

Within a moment, with utmost power

And precision, he passes the others;

In another, the top of the block tumbles,

He stands victorious, and others battle

For minor glory.

Always, the crowd gasps;

Always, behind his pleased,

Confident countenance,

There is never a doubt.

It is 9 years since my father, Alan Harry Herbert Wills, died. The pain of loss is not as keen now. Is that because of time or distance? That is the realm of the physicist/philosopher.

Still sharp, though, are the memories of his ways, and the older I become, the more etched many of them are becoming in my being. He lives on in me.

The Tool Room

The narrow room next to the laundry

Was an architectural aberration,

A cavity which, given a door

With a key, became

The Holy of Holies.

Outside it, garden tools leaned like

Once-hopeful acolytes waiting

To catch a glimpse of the arcane

Goings-on within.

Ah, within – a narrow, hand-made,

Rough-sawn workbench,

Hand-me-down vise, and a hundred

Half-filled jars of rarely-used

Fasteners, washers or pieces of

Carefully sliced cork to be used

In who-knows-what obscure task.

Precision hand tools – some

Hand-made – hung from

Makeshift brackets, or huddled

In type on dedicated shelves.

The air was all sawdust, turps,

Lubricants and linseed oil, and,

If not properly sealed, the pipe

Tobacco in the coloured tin

On the second shelf.

I go there often in my mind, to see

The notches from a poorly handled

Wood chisel, see the shavings and bent nails,

The bricks in the wall that dried

Woodstain brushes – like a nuanced

Checkerboard – and the clear nail polish that he used

To seal the dozens of cuts and scrapes that he

Wore over year like medals hidden

Under a coat; I feel them when I hold

This screwdriver – ineffectual, rounded, chipped blade,

Wooden handle paint-stained and darkened

From decades of use – and hear the instruction

To let the tool do the work

Or you’ll wind up one yourself.

These are the things that hold me,

Keep the connection, echo in the soul

When a job’s well done, draw a smile

Instead of a curse when a nail is bent.