Everybody has a story.
I've hesitated to tell mine but I think that perhaps I can now look
back on it without becoming too emotional.
Where to start? Not at
the beginning, that would take too long and I might never finish. So,
I'll begin seven years ago, Melbourne Cup Day 2008, when I fainted in the
kitchen of the home we'd just moved into a few weeks previously.
52 days later, early on
Christmas Eve morning, I answered the in-house telephone beside my
hospital bed to hear that a suitable donor liver was available and
would I accept it. I was one of the lucky ones; I only had to wait a
few weeks. The average waiting time is three years.
I don't remember much
about the time between my collapse and the liver transplant
operation. I was admitted to Ballarat Hospital where I underwent
numerous tests and was informed that the problem was diagnosed as Cryptogenic liver failure, which basically means liver failure from
unknown causes. At that stage I had no idea how serious my condition
actually was so, even though I felt very ill, when I was discharged
from hospital after three weeks, I assumed that I was responding to
treatment and medication. Five days later, I collapsed again.
When I became conscious
I was in a Melbourne hospital, 150 kilometres from my country home. I
could not remember my name or even what year it was. I was shocked
when my husband told me that I was in the liver ward awaiting a
transplant. I didn't think I was that sick!
I'd had a nasty flu a
few weeks before my collapse. We were moving house at the time, and
so I assumed that my exhaustion and nausea was the result of the flu
and the extra stress of moving. That is, until my urine turned dark
orange. My GP took a litmus test of my urine sample and told me that
I was just a little bit dehydrated and to drink more water. At that
stage I was drinking about two litres of water a day - I didn't think
it was possible to fit any more in and said so. A week later, when I
became dizzy and disoriented while driving to the local shops, I knew
I was in real trouble but was unable to get an appointment with my GP
for another week.
I looked up my symptoms
on the internet and top of the list was Cirrhosis of the Liver, which
I immediately rejected. Liver disease happened to other people, not
to me - and only alcoholics got cirrhosis, didn't they? Several days
after regaining consciousness following my second collapse, I was
able to get up and go to the bathroom. I was absolutely shocked to
the core of my being to realise that the grossly obese woman I saw in
the mirror with eyes the colour of egg yolks was, in fact, me! The
day before I collapsed the second time I had weighed myself and I was
67 kilos. Now, two weeks later, I weighed in at 98 kilos and it was all
fluid. However, it was not until the day before I underwent the
transplant operation that I fully accepted just how sick I was, even
though I had been told several times by specialist staff at the
hospital that my liver had totally collapsed and it was one of the
worst cases they had seen. I guess you could say I was in denial ...
The morning of the
operation passed quickly, with medical professionals coming by every
few minutes to explain different facets of the operation. They were
all very reassuring and I had no doubt that I was in the best hands.
I didn’t have time to be afraid, and I guess I was pretty well
drugged up anyway. Everything seemed very clear, I knew exactly what
was happening but it was like a dream, not quite real.
It was a six and a half hour operation, plus four hours’ preparation, so altogether 10 and a
half-hours. My rib-cage was cut open down the centre, and then across
in a dog-leg and folded back to insert the new liver. There were no
stitches, instead, I had 36 small steel staples, which were much
easier to remove when the time came.
Despite dozens of tests
over the three week waiting period, the team at the Austin could not
find any reason for my liver failure. When they removed my dead
liver, it was the size and consistency of a golf-ball and they
couldn’t even do a biopsy on it. My surgeon told my husband that I
would not have lived another 48 hours without the transplant. It
seems that it was all meant to be. I am so sad that somebody had to
die before I could receive the transplant and I am still coming to
terms with that, but I am so grateful to have this second chance.
I don’t remember
Christmas Day, but apparently I woke up and recognised Tom. It
wasn’t until the next day that I really became aware of my
surroundings in the recovery room. For a few days I was struggling
with reality, whatever drugs they had me on made for some interesting
hallucinations, but at least I wasn’t feeling any pain.
I spent a week in
isolation to minimise the risk of exposure to infection or viruses.
My weight was not coming down, and the risk of thrombosis was a
problem. My legs were so big that the largest support stockings were
too tight for me. Finally, I was put on fluid tablets and at last the
weight started to shift. I was losing three to five kilos a day, and
by the time I was discharged to go home I was down to 76 kilos.
It was very strange to
be home again. Everything looked familiar, but felt as if it
belonged to somebody else. Of course we had only been in the house
for six weeks before I collapsed, so I hadn’t even had time to settle
in. I felt very wobbly after the drive, but I was home again after
two and a half months, and that was all that mattered.
Over the next couple of
weeks, my weight kept dropping. It leveled out at 47 kilos. I'd lost
55 kilos in the space of just under three weeks, and now we realised
that I was completely malnourished. My stomach was bloated, I had no
breasts at all, and my arms and legs were pathetically thin. Plus,
after having multiple vials of blood taken every day over a two month
period, I had collapsed veins, multiple bruises and track marks up
both arms. I looked like a junkie!
Six months after the
operation, my veins were slowly recovering, and I was assured that
they would come good given time. I slowly regained the weight I'd
lost, was eating lots of protein and organic whole foods, and began
exercising regularly, walking our dog every evening and also building
my strength with simple yoga exercises. I knew that there would be
ups and downs along the way, but I felt very positive about the
future and was looking forward to whatever came along.
My specialists came to
the conclusion that my own immune system had decided my liver was a
threat and proceeded to attack it - an auto-immune disease, in other
words, most probably brought on by the virus I was suffering from at
the time. They called it Ideopathic Fulminant Hepatic Failure.
I was discharged on an
industrial-sized dose of immuno-suppressant medication, which
gradually reduced over time, but which I must take for the rest of my
life to stop my body rejecting the transplant. This means that I have
no immunity from bugs and infections so have to be very careful, that
I don't catch a virus because of the very real fact that it could
kill me.
Restaurants, concerts
and supermarkets, especially in Winter are not an option for me, and
I quake when I have to sit in a crowded waiting room. The medication
also makes me very tired, so that talking with more than one person
at a time exhausts me within a very few minutes, and it affects my
concentration so that I can only drive for 20 minutes or so without
taking a break. I also suffer sensory overload when the smallest
noise or bright lights can set my nerves screaming.
I never plan
ahead, invitations are rarely accepted and I only go out if I feel OK
on the day, but I have learned to live with all that and my Art has
been a huge contributor to my well-being.
I was always a keen
photographer and, as therapy, I began to teach myself Photoshop. It's
been an incredible help to my healing. Seven years later, there are
still days when I have no energy for anything, down days when I'm
feeling very low; I sit at the computer and lose myself in my art. There
is nothing like it for lifting my spirits.
If you've got this far, thank you for reading. There is so much more
to tell, but the rest must wait for another day ...
P.S. Your comments and questions are welcome, I will read and answer each and every one.
