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:
“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…..
Thanks for sharing
I have a great friend that has emphysema
He is at the point of to begin the work up
This has helped me understand his plight and how I can assist him and his family
Thanks Tim, you’re a gem!
Matt old mate – nothing compares my friend; huge, daunting and hopeful – all at once. Superhuman efforts on both you parts – and of course, your lads. We are with you both as you take this journey.
Travel well & safe, Steve D
Always thinking of her x