Spectrum / Issue 33
PWCF SPOTLIGHT
SECTION 05
PAGE 16Ñ18
50 YEARS OF LIFE
By Greg Foley, PWCF, Co Dublin
It's funny the things you remember. Back in the 1970s, I was
watching the Oscars when John Wayne strode to the podium to
present an award. Slightly breathless, he said in his typical drawl:
"Oscar came to Hollywood in 1929". After a bit of a gap, he added
"So did I." Well, the Cystic Fibrosis Association of Ireland was
'born' in 1963 and...so was I. That makes me 50 years old and as
a person suffering from CF (I refuse to say PWCF by the way!),
that's a long time. Of course, these days, it's not enough to say
you have CF, you have to give your genotype. I'm homozygous
for ∆F508, as was my late brother, Tony, who died tragically and
ironically of oesophageal cancer in 2010 at the age of 42. My three
other siblings are CF-free and alive and well.
Greg, aged 7.
"While recognising your limitations, you should have high expectations,
not just from life but from yourself"
Much has happened in the last 50 years and I obviously can't give you a blow-by-blow account of
my life. So, I thought I'd give just a quick summary and then mention some of the more significant
moments and events; and give you some thoughts. I'm a very private person by nature and the
reason I am writing this is largely down to the fact that I have a 5 year old son, Leo. Knowing
how protective I am of Leo, who is perfectly healthy, I can only imagine what it must be like for a
parent of a child with CF. So I'm writing this in the hope that it might give parents some insight
into what life with CF can be like. I suppose the message I most want to get across to you is
that people who suffer from CF, including children and teenagers, rapidly develop a resilience and
mental toughness that will probably far exceed yours. So although you will always worry about
them and want to protect them, they will be both mental and physical survivors.
Anyway, my life with CF has been busy. I have had all the usual complications: repeated infections,
a collapsed lung that had to be treated with by pleurodesis, a life-threatening haemoptysis, two
bowel blockages, oxygen dependence between 1996 and 2002, BIPAP dependence for all of 2002,
a double lung transplant (in Newcastle) around Christmas of that year, subsequent bouts of
rejection and infection, kidney failure and a year on dialysis, and finally, a kidney transplant on
New Years Day, 2011. There have been many other 'niggles' along the way but incredibly I have not
developed diabetes.
In that time, I've gone to university, both in UCD where I earned a degree in chemical engineering
in 1984 and a PhD in 1993 and in the US where I earned a master's from Cornell University in 1986.
I'm educated to the hilt in other words! I've been a lecturer in DCU more or less continuously since
1986 and I'm still there to this day. I'm effectively institutionalised.
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May/Jun 2013
I've been married twice, once to a fellow CF sufferer, Patricia Kelly, who died in 1992 following a
double-lung transplant in Harefield. In those days, there wasn't the same appreciation of crossinfection and 'intimacy' between patients was not as unthinkable as it might be now. That whole
period was dominated by illness and as with two alcoholics who meet in rehab, our relationship
was probably doomed from the beginning, even if the ending was unexpectedly tragic. In 1998
I married Julie Dowsett, who was then the CF Dietitian in St.Vincent's (therein lies a tale!) and
happily married we remain. We often joke that I have lived a lot longer than she probably expected
and she has gotten far more than she bargained for. We have a little boy, the aforementioned Leo,
who was conceived in the Assisted Reproduction Unit in Clane Hospital. He is, without doubt, the
love of our lives.
Greg with his son Leo.
An Engineering textbook
written by Greg.
Greg today.
The worst of times? Early childhood was hard because being different is tough for any child and
my life was plagued by what we called 'tummy' problems. I don't think it is quite appreciated
the game changer that was the arrival of Pancrease. That was around 1980, and it meant the
end of days spent sitting on toilets. The late 1990s to early 2000s were tough too. Maintaining
my lecturing job while operating on very low lung function with very poor 'sats' was extremely
challenging. At times, things were almost comical. My collapsed lung happened early one morning
but I still went to work, despite feeling desperately breathless. I had two lectures in a row that
morning and half way through the second, I made some excuse to the students about having to
finish early and made my way to Vincent's where the registrar put in a chest drain.
Kidney failure is tough too. It's not quite as debilitating as lung failure but it brings with it a level
of exhaustion that is difficult to describe. Sleep is possible, any place, any time. Kidney failure
and family life do not mix well. The year on dialysis is mentally tough too, even though you feel
physically better. The shear predictability of the dialysis sessions is draining.
When I look back on all of these challenges, sure in the knowledge that there will be more, I
sometimes try to figure out how I got through it all. Medical science has played a major part, for
sure, and the love and support of Julie and all my family has been a big factor. But when I think of
it, it seems to me that the biggest factor was fear. Not fear of death or anything as dramatic as
that, but fear of the whole 'house of a cards' collapsing around my ears. The fact is that I had, and
have more than ever, too much to lose. To submit to the CF could have meant the end of so many
things that I loved. Like sports people who get injured repeatedly only to drag themselves back to
fitness, I felt that I had no option but to do likewise when the CF knocked me back.
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Spectrum / Issue 33
And what a good life I have had! I have been most fortunate to have forged a career that I love.
The mix of teaching, research and writing that I enjoy in DCU is such that I never dread going to
work. In fact, I positively enjoy it. This year I will publish my first book, an engineering textbook.
It has always been an ambition of mine to write a book like this and it has been a labour of love
Ñ I won't get rich on the proceeds. And that, indeed, is the secret of living with CF. You need to
develop a passion for something, something that makes you want to endure the setbacks that
will inevitably come your way. You should never settle for survival and see survival as a victory.
While recognising your limitations, you should have high expectations, not just from life but from
yourself.
When people are asked the question "do you have any regrets?", they usually reply with something
trite lie "I don't do regrets". Well, to misquote Frank Sinatra, I have "too many to mention". We
all do. But do I regret having CF? Well, yes and no. I do sometimes wonder what life would have
been like if I hadn't had CF Ñ I just don't know. But CF has had its upsides as well. I have met
so many wonderful people through CF, not least Julie; but countless medical staff and patients.
Furthermore, attending a transplant unit and being on dialysis has opened my eyes to the
challenges faced by people with conditions other than CF.
There is a wonderful story by French author, Guy de Maupassant, which we did for the Leaving
Cert. The story is called Menuet and it is about a man who observes too old folk dancing in the
park. In the opening line of the story, the author basically says (it's in French!) that it's the little
things in life that affect him emotionally, not the great events like wars and famines. Back in the
bad old days, not long before my lung transplant, I had to have a DEXA scan. I was breathless in a
way that only those who have experienced lung failure can appreciate. I have never forgotten the
gentleness, kindness and patience that the radiographer showed to me that day and I have always
remembered her. The experience of little moments like that, and there have been many, go some
way towards making the whole CF journey not only bearable but enriching.
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