NV teacher battles
with cystic fibrosis

Tt has been mare than one year since Marquret
Phillipson Benson received her double lung tans-
plant, The North Vancouver woman and former
Brookshank clenentary teacher recently salked to
News reporter Auna Marie D'Angelo about ber
transplant experience.

guess the reason that I have sur-

vived these 41 years even though I

was told I wouldn’t live to see my
first birthday was I just believed.

T truly think chat in order to survive anything,
you need to believe. And you need to believe in
not only your dreams and in your hopes, vou
need to believe in yourself’ and that every possi-

“bility you can imagine can happen to you. |

And when you are told that you are not going
to live to see the next day, you have to believe in
something, anything, in order to survive.

For me, as I was growing up such a sick fittle
kid and not being able to go and run and play
with the rest of the kids, [ created my awn imag-
inary world with imaginary characters.

Growing up, I was really, really sick and they
could neve: figure out what was wrong with me.
They thought [was a celiac kid because I could-
n't digest any food and I constantly had chest
infections, :

Te wasn’t until I was 14 and I went back to my
pediatrician that 1 was diagnosed with cystic
fibrosis (CF), a genetic lung disease. At that
point, I was told my life expectancy was age 15.

That was quite a shocker to me, my parents,
my family and friends. We had no idea what CF.
was at all, There was not much information
about it. [ remember going to high school and
looking it up in an encyclopedia and of course,
the information in there was just horrible.

But it made me realize. I looked at it and said,
‘Oh yes, I have CF.” ; .

1 just told the doctors and the CF specialists
that I was going to live for a long time until I was
old and grey. And no one was going to be able to

~ “tell me.what I was going to do and not do. They

‘had never met anybody who was that so deter-
mined and probably bull-headed, bur [ had been
the black sheep at the Children’s Hospital (at its
old site in Vancouver Hospital) for a long ume.

The doctors just sort of laughed. Then, of
course, when I cold them that I was going to go

-'touniversity and become a teacher, they were

just quite shocked.
_ [said T want to teach kids and be able to make
a difference in the world. IfT only lived to age 30
+ or 35, L wanted to make a difference.
. And I wanted to let kids know that no matter
what happens to them, they can survive. They
just have to have a positive attitude, believe in

- their dreams and their hopes and themselves.
And yes, it is important to teach them reading,

writing and! arithmetic. I also wanted to teach

- ~<tthem about humanity and taking care of each

*. °» other, taking care of the world and taking care of
their bodies.

. oes So I did go to university. I did really maintain
good health, ate well, slept well-and rested. And
- T went to night clubs and did all those things that
formal university and high schools people do. I
“was very involved: student council, cheerleading,

“even, in university. ;

I graduated from Simon Fraser University in

7 1981 and got my teacher’s certificate. I started -

=» teaching’ right away. I think I was the youngest
“teacher in the school district. I just wanted to be
out there and work with the kids. Later, at night
.. school,'I did finish my degree with a minor in
learning disabilities and in early childhood edu-
cation.’
When I was 27 I had been seeing a fellow
“".- who decided that two days before Christmas to
“fet. me know that he didn’t want to be alone
° “when he was 40. To me that was one of the most
“- erushing breakups I have ever had because I had
‘no control over that: when I was going to die.
‘The amazing thing was that my best friend,
. Christine Pallot, told me ‘Who wrote him a guar-
Santee that he will live forever?’ I said, ‘Yeah, you
“are right. Destiny is what is going to take you.’
“That was December and in July, my best friend
was killed in a river rafting accident in Squamish.
I-had-known Christine since Grade.4. That
was really crushing because here was a person
who was vibrant and wonderful and she had the
insight to say that no one will live forever and
who’ knows when you are going to dic. Her
death was like someone ripping my right arm off

_ much.

BRIAN and Margaret Benson faced Margaret's medical challenge together.

beeause we had been through so much together.

Five years earlier she and I had a conversation
where she kept telling me that a fellow we had
gone to school with, Brian Benson, was the guy
for me,

Shortly after Christine’s death, T met Brian
again. It was my 10 year grad reunion in 1987.
We went out. The first thing he talked about was
Christine and how much it must have hurt me to
lose her. { thought what an extraordinary thing
for a man to say, knowing how much it did affect
my life. I still miss her to this day.

My philosophy about death has also been that
if you love someone that much, you will never
lose them, they will always be in your heart and
be with you no matter where you go. And you
will see them again sometime. Where, Pm not
sure, but vou never lose anybody you love so

It was so bizarre that I found Brian again. We
started dating in October (1987) and in January
we went to Long Beach, which is a place that
Christine and I loved. We used to spend a lot of
summers and Thanksgivings there. He basically
let go of my hand and said ‘You go and be with
her and say goodbye.” That’s when it hit me, ‘Oh
my God, this is what Christine told me years
ago,” and I knew she had sent him. He was my
my angel on earth. And I had an angel in heaven
watching over me.

We were married that July, in 1988.

We rode bikes, travelled, we had a tandem
bike. Life was great. I was really healthy. We
spent time in the Cariboo. We horseback rode,
gardened and did all sorts of things.

Then about seven or eight years ago, my:
health started to decline. I ended up going into
the hospital (St. Paul’s).

When you go to the hospital as a CF patient,
you have intravenous antibiotics to clear the
ungs, intense physiotherapy and enhanced
appetite building or eating. Because we don’t

igest our food properly, they want us to eat lots

and fots. And exercise. You'd be on the treadmill

or the bike everyday.

It started off once a year, and then three to
four years later, I started to go into hospital more
often: usually spring break, summer time and
sometimes over the Christmas holiday. Basically I
was staying healthy just to go to back to work
which in hindsight I now realize was not the
right thing to do. I should have taken some time
off. But I was just so dedicated to my kids. I had

_ the feeling that no one could do for them what I

could. .

In 1998, I got really ill. In spring break, I
ended up in the hospital with a really bad chest
infection and ended up going into congestive
heart failure. Brian ‘was basically told that if
Margaret makes it through this, she is going to

SUNDAY FOCUS

Sunday, December 3, 2006 - North Shore News - 3

yet

photo submitted

have to consider a double lung transplant.

His answer was when she gets through it.

The doctors really didn’t know what my
prognosis was going to be. We found out later
that the doctors had CF patients not as sick as me
in ICU that did not make it. .

But I made it though, even though a priest
read me my last rites.

He was just reading from his praver book:
‘The Lord is my shepherd; [ shall not want...
Though [ walk through the valley of the shadows
of death...”

And what came to my mind was Monty
Python and the Holy Grail where the guy goes,
‘I'm not quite dead yet, I’m ready to go for a
walk.

I was just screaming it and moving my arms,
but no one could hear me because I had this
mask on my face that was literally cranked to my
face and all it had was this little opening that
would open to suck out the mucous. It was a bi-
pap machine.

That’s how I deal with things, through
humour ,and IF thought, OK, I was going to
make this guy laugh one way or another. I just
kept saying, ‘I’m not quite dead yet. I’m ready to
go for a walk. I’m feeling much better.”

I made it through and doctors said you will
be on full-time oxygen, you’d better quit work,
you can’t go horseback riding.

I proved them wrong again. I got off the oxy-
gen and only used it when I was tired or during
exercise or when we would go up to the Cariboo
with the different altitude. F went horseback rid-
ing with an oxygen tank tied to the saddle.

T had to quit teaching until June. But-I was
back in September at Brooksbank although I had

to lessen my (teaching) time.

That’s when I started testing for the trans-
plant. Everything from blood tests to psycholog-
ical tests to checking the heart. I am a B positive

blood type, which is found in only 10% of the

population, And it (the donor lungs) had to be
the right size which was small. I weighed about
107 Ib. when I went into surgery. I was unable to
get a lobe transplant because I was too big so I
knew it (the donor lungs) had to be from a child
or young adult. :

I finaliy got put on the (transplant recipient)
list in February of 1999. I didn’t think about the
beeper. I just carried it in a little purse. Nobody
saw it. The kids were all aware, I used to carry my
oxygen tank to school and they used to call me
the tube lady. The only ime I worried was when
I went to a theatre production and I thought, my
God, what if my beeper goes off.

T never had a dry run where they call you in,
they think they have a potential donor and get
you prepared. I know some people have even
gotten right to the operating room and been told

the kings are no good,

‘Time was getting to be of the esence for me.

[celebrated my 40th birthday in the hospital
in July 1999. Thad to get a day pass to go out in
the evening. That was a special occasion.

For my 40th birthday party, Brian had
arranged for us to renew our wedding vows
unbeknownst to everyone there except his best
friend and his wife and the minister.

He had gotten flowers, corsages and a piper.
The topper was that he gave me his mother’s
wedding band. The biggest, burliest guys were
sobbing.

That was really precious to me because we
werent sure if we'd) ever celebrate another
anniversary together and if Pd ever see my 41st
birthday.

All my admissions were at St. Paul's (site of
the main CF clinic), but my transplant -vas done
at Vancouver Hospital. OA

By the time the end of August and September

rolled around 1 was just so ill T had to make the
decision to quit teaching, ‘That was really tough,
But when someone said to me ‘What if you are
so sick that they don’t accept vou tor transplant?”
LT went, ‘Yeah, it's nor worth it So T gave up
after 18 years of teaching.

I still pine sometimes for the classroom and. ¢
the kids and the camaraderie FE had with my col-
leagues.

Basically 1 was just living to survive then, Five
days before the wansplant I had gone to a craft
fair and ended up catching a cold. I had juse got-
ten out of the bospital. I was really worned if the
cold was bad enough and if something happened
they wouldn't accept me for transplant.

Everyday 1 worked out on the treadmill. I
always worked out to Cher’s Beliere album. My
mantra was strength, power, breathe, believe.
‘Those are the words that kept me going. :

‘Then in fate fall, Brian and I were sitting at
home. He got the phone and all I heard was him
say was, ‘*Umhmm, umhmm, umhmm. Well, she
caught a cold.” They were going to phone back
in tive minutes. | knew it was the transplant coor-
dinator and they were going to determine
whether or not I would get the transplant. {t was
really a tough moment because here was my
chance of the lifetime and I blew it because-I
went to this silly craft fair and caught a cold.

They phoned back and they said bring her in
as a backup. At that moment we looked at each -
other and reality set in that I might not make it.
ft was gcing to go one way or the other.

Of course the other thing was, in our elation, ..
someone's loved one has passed away and there
is a grieving family and grieving friends. Knowing
that someone had to die in order to give me my .
life; there is no way to make that right. It’s just
so unfair to the family and to the donor.

People say that he or she would have died
anyway, That is not going to make any differ-
ence. But here is someone who was vibrant and
full of life, who had a whole live to live and has
lost their life. The only thing that can make it, I:
hate to say OK, is the fact that their gift was self-- > :-
less as it is has given life to other people. Bs

I was just lucky that the lungs were OK”.
because they are usually the first organ destroyed,
especially in a car accident. I¢ almost has tobe a
perfect brain death for the lungs to be acceptable
for transplant. For me to get a perfect set oflungs © |...
and a perfect match was like finding a needle ina: ....:
haystack. : . ; pos

- The cold was in my nose. I think the reason -
the transplant doctors went for it was because I”
was really determined and they knew I was really ©.
strong, as sick as I was. My lungs, their capacity,
was what they called end stage. ae

So we got to the hospital. I go through all the... >
rigmarole. One of my brothers came down at 2:
a.m. to give me a hug. TF atways tell people he was
the best hugger. We phoned most of the family.

At 5:20 a.m, the nurse came in and said it’s a
go. I remember Brian and I looking at each other -
and saying this is it. a a

The first thing we did was put our hands

See Transplant page 9

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