Chapter 6
Transplantation (abridged)
As I was being wheeled to theatre I
was surprised how calm I was. I knew there was a chance I would not wake up
from this most dangerous and complicated of operations. As we got closer my
nurse Winnie was quiet as was the wardie wheeling my chair. When we reached the
door Winnie looked at me and we both knew there really wasn’t anything to say
so she bent down and kissed me on the cheek and the wardie wheeled me over next
to the table. Once I got up on the table some final paperwork was done and I
was asked if I understood everything that was about to happen. I replied “its a
bit late to ask me that now!”.
I lay down on the table so more
lines could be put in me and the anesthetist could prepare to do his job. I
was asked if I wanted to say anything before I was put under. It felt a bit
like any last words before execution. I told them “no matter what happens do
not give up because I won’t”. Turns out these were prophetic words.
The operation was long as one would
expect with replacing the most important organ in the body. The new heart took
considerable time to start up and was an obvious problem from a hypoxic brain
injury point of view. As my body was taken off the Heart Lung Bypass machine (a
machine that keeps oxygenated blood flowing while the heart is disconnected
from the body) a drug called Protamine was administered to reverse the effects
of the heparin (blood thinner) that was in my system.
I had a 1 in 1000 (Dr’s words)
reaction to the protamine and my pulmonary pressures went through the roof with
my lungs blowing up like balloons!
The surgeons could not close me up.
For the next couple of days I lay
heavily sedated with my chest open with only a surgical gauze cover of some
sort while we waited for my lung pressures to come down. My friend Stewart
reckons it was the creepiest thing he had seen as he looked down upon me and
could see the dressing impeded image of my heart beating underneath. After my
lung pressures had come down I was wheeled back into theatre and my chest was
finally closed with titanium wire in my sternum and the glue and internal
stitches that were used in those days.
While I was out of it waiting for
my lung pressures to reduce, my mum had flown down after my high school
sweetheart Dianne had stayed with her and family friends Brian and June
organised to get her down to Brisbane
from Townsville. Bear in mind we had been in hospital together in Townsville at
the same time nearly a year earlier. Dr Andrew Galbraith an amazing doctor and
an amazing human being was talking to my mum and was doing the whole good news
bad news routine.
As soon as Andrew started to
explain that I had had a reaction to the Protamine and that it took a really
long time to get the new heart started and finally that they were having
problems with one side of my heart it was all too much and mum had a heart
attack in Andrew’s arms. So yes my mother had a heart attack in the arms of one
of the finest heart transplant and heart failure doctors in the entire world. If
you are going to have a heart attack that’s the place to have it.
I already had hypoxic brain injury
from the first heart attack a year earlier and now here we were with the
possibility with deeper injury to my brain on top of the heart and lung issues.
As is always the case with these things we wouldn’t know until I regained
consciousness.
I finally woke up and by this stage
it was roughly three days after the operation. I was disorientated but was
picking up on things quickly. I remember thinking I had to fight harder and was
saying that to myself over and over until I said it out aloud and my Intensive
Care Nurse who was sitting at the end of my bed heard and told me to cut myself
some slack. I guess she thought I was metaphorically beating myself up for not
being strong enough and looking back I guess I was.
It’s funny the things you think to
yourself about how you want your legacy to be. At the time I knew I was nowhere
near out of the woods as the saying goes. I just wanted to be remembered for being
a fighter. Also as a life long atheist I was not going to be a death bed
conversion. I detest weakness and to me that is the height of weakness. After a
couple of more days in Intensive care with a few little hiccups along the way.
The central lines for pain relief and also the food tube were removed and we
were preparing to go down to the transplant ward for recovery. Then it
happened.
I was being wheeled to the shower
for the first time after the operation, we got in there and as the nurse
proceeded to wash my chest she started to pull down the dressing on my chest
wound and then we both stopped. My first thought was don’t freak out! Her first
words were that we had better get a doctor to look at that. You see if I have
learned anything about different sections of this hospital it’s the way
different nurses handle difficult situations. Unlike other areas of the
hospital intensive care nurses tend to be far more decisive with their answers
than the others but this lady’s answer to my question of “that’s not supposed
to look like that is it” was not as decisive as I expected.
You see when the dressing was
pulled down it turned out my internal stitches had come undone and I had opened
up. It was about the creepiest thing I had ever seen and it was happening to my
body! There it was all open bright red and fleshy like nicely marbled steak.
Seen worse in horror movies but when it’s your body it takes on a different
look.
I was wheeled back to the bed and
we waited for the doctor. He arrived and all he could say initially was “mmmmm
that’s interesting isn’t it”. I wanted to start laughing but I had this crazy
thought that something might move inside me where it’s not supposed to move.
It was decided I would be closed up
on the bed under local anaesthetic. All of a sudden out of nowhere nurses
started appearing and the couple of visitors that were there
were allowed to stay. They prepared my chest and the surgeon did his thing
closing me up. All the while this was happening the prettiest nurse in the
entire hospital was holding my hand telling me how brave I was. I have to admit
that my first instinct was to say stop it and that I am not a child but there
was no way known I was going to do that. She absolutely took my breath away.
Short blonde hair and a fabulous body, I was going to milk this moment as long
as I could. I wasn’t till I looked into a mirror later that day that I realised
just how dishevelled I really looked. The dreams of the ill and infirmed.
Later that day I was transferred to
ward 1A/B so that I could transition to my eventual release home which would
take another couple of weeks as I started to have problems.
My chest wound was refusing to
start healing and the risk of infection was starting to rise. The infection
team started to see me and began to prepare me for the possibility that their
maybe multiple operations to follow as they may need to open me up again and
clean me up inside. If there was infection this may need to be done on multiple
occasions. Needless to say the risks were huge given what my body had already
been through. It was also one of the rare times I genuinely felt fear.
Its hard to explain just how
vulnerable one can feel at a time like that but I’ll give it a go. Imagine laying on
a bed after one of the most dangerous and impactful operations the human body
can undergo. Your skin and flesh has been cut from the top of your sternum
(bottom of your throat) down to the middle of your stomach. Three holes are
made above your belly button so three drainage tubes can be installed. Then a
large cut is made in your right groin for the Aortic Balloon Pump. The groin
wound would take three months to heal and required me to wear a bag on it so
the large amounts of fluid could be expelled.
After the chest is exposed a
medical version of a jigsaw is run up the sternum and the chest cavity is
opened and the operation takes place. So you have the most important organ in
your body replaced and you cannot have your chest closed afterwards as you have
what is described as a one in a thousand allergic reaction to a drug called
protamine which is used to reverse the effects of the blood thinners during the
bypass phase of the operation.
After all of the things that have
been described above it is really very difficult to feel anything but
completely physically vulnerable when you are laying in bed and while you are
still technically open with the chest wound refusing to heal a doctor tells you
we are probably going to have to go in again and clean your insides of
infection.
It is at this point that you
genuinely start to think that it wouldn't be too bad to die as long as it happens
while I am asleep and don’t know anything about it and I don’t wake. Let’s face
it, up to that point I have more than paid my dues for ten lifetimes I owe
nobody anything except my mum and my donor and surgeon. In the end I pulled
myself together as the one thing I never want to be known as is a quitter.
One morning during rounds the doctors came to see me as usual. Dr Keith McNeil who headed up the Lung Unit at the time was doing a shift on the Saturday morning, I hadn't seen him since he asked me if i had any questions as i sat on the table in theatre just before they were to knock me out for the transplant. I wanted to thank him for his part in saving my life. He responded by saying "don't thank me you are the one that told us that no matter what happens don't give up". I couldn't believe that he remembered. That is the sort of thing that sorts out the good doctors from the great doctors.
Thankfully after a number of tests
were done over the next day or two I was decided not to be so keen to open me
up again and I was more than happy to concur. There was however still the
problem of wounds not healing and this was getting me down. It was rather
creepy going into the shower and seeing the two edges of this huge chest wound
not “knitting” together and I was wondering what was going to happen. After a
few more days and no progress I spoke to one of my nurses at the time after yet
another visit from the wound management team. Bridget was and still is a great
nurse and unlike so many actually listens to the patient. I confided in her
that I really didn’t care what the scar ended up looking like I just wanted it
to start healing. You see at the time the thinking was the best wound
management was to keep a moist covered sterile environment. Unfortunately it
was obvious this was not working and the longer it remained this way the
greater chance for infection. I suggested to Bridget that when I was growing up
the usual course of action was to keep a wound clean and dry and open to the
air if practical. We decided to do exactly that and lo and behold the next
morning it was like a miracle.
I woke up and the wound had dried
out and most importantly tissue had started to grow down the gap that had
formed after the outer stitches had started to loosen with the constant movement
of the previous week or two. All in just a bit over 12 hours!
Yep sometimes, only sometimes I
must stress old school works.
So over the next few weeks the
wound healed but there was still the matter of the groin wound and its leaking
of fluid. This would end up taking about three months to heal and was watched
over by the hospital’s plastic surgeon. Yes there are real legitimate surgeons
called plastic surgeons whose job it is to oversee the healing of these sorts
of wounds not just give teenage girls a new rack.
Around this time I was learning
about my drugs that I would be taking twice a day for the rest of my life plus
a plethora of other medications that I would eventually be weaned off. There
were some drugs that had the most awful side effects but I coped with it well
given I was by myself with no one to help. My mum was recovering in Royal Brisbane
Hospital from the heart
attack she had beside my bed so mum wasn’t an option at the time. I found my
self shaking terribly from one of the immunosuppressants called Cyclosporine.
Unfortunately with my hands shaking uncontrollably I was genuinely worried I
would not be able to look after my wounds and most importantly the PICC line
that was being used to deliver drugs intravenously. I stayed in a few more days
while my body settled down and was then able to go home.
When you are in a life and death
scenario for a long period of time where things such as infection or the heart
simply not working anymore come into play your mind starts to deal with things
in an unusual manner. The thoughts you have range from what you are going to do
when you win lotto this week to would it be so bad to die again. After all when
you have been through it all previously it can work two ways. On one hand you
can say to yourself I have been through it all before, died and was revived
after a crazy length of time or you can feel the worst fear imaginable as you
have been through it all before and you know exactly what to expect. I
experienced both.
It also doesn’t help when you are
dealing with a really great hospital that sits in the middle of an overarching
incompetent statewide organisation called Queensland Health. Thank goodness
when I went through this initial phase the people at Prince
Charles Hospital
in Brisbane, Australia were an oasis in the
middle of a statewide public health mess. The health minister at the time was
pretty much hated by staff due to constantly fighting with them about pay and
safety issues and when you hear stories about the ward not being able to get
in-ear thermometers at thirty dollars wholesale but the government being
prepared to give money for a pedestrian bridge across the Brisbane river and
money for the arts while health misses out, no wonder people had lost faith in
the government at the time. The State of Queensland
however continued to vote for them for many years as the opposition were a
complete rabble.
For the next three months I
practically lived at the hospital having biopsies, clinics and anything else we
could do there. Biopsies are always fun. You lay on the table on your back and
turn your head to the left so there is access to a neck vein (usually Jugular).
Local anaesthetic is placed around the entry point of the vein, once it starts
to take effect the cardiac catheter is pushed into the vein. The wire with the
tiny forceps are pushed down to the heart where a tiny little piece is cut off.
When I had my first biopsy after the transplant I overheard the doctors
remarking how much easier it is to get a heart sample when its freshly
transplanted. “Fresh meat” one of them remarked and started laughing so I
started laughing with them. After they have done what they need to do they sit you up on
the table and pull the catheter sheath out of your neck and get you to hold
your neck for about half an hour and you are finished. You have a drink and a
biscuit while you are waiting and go home afterwards.
Whilst it is an invasive procedure
it is also the easiest of those procedures.
Thankfully I didn’t have any major
rejection episodes in those early months but it certainly wasn’t a smooth ride.
Unfortunately side effects from the drugs were common plus there was the small
matter of me not having Cytomegalovirus (CMV) in my system and my heart being
CMV positive.
CMV is a common virus that most of
the population carry in their system and unless you are immunosuppressed you will more than likely never show any
symptoms of illness as it is simply one of those bugs we carry as humans that
rarely effect us. If you are immunosuppressed however it can be quite deadly.
Transplant recipients, and HIV/AIDS patients are particularly at risk. I was at
risk so I was taking an antiviral drug called Valganciclovir. As soon as I was
taken off the drug at the six month mark post transplant I went CMV positive
and ended up in agony with nerve damage throughout my upper body. The Heart
Transplant unit had never seen someone present with these symptoms. It was the
start of another nightmare. More on that later.
Once my wounds had healed at around
the three month mark the leaking wound in my groin finally stopped. There was a
definite moment where I realised that I was not going to need to wear a bag and
change dressings all the time. It coincided with a particularly beautiful cloudless
sky, the likes of which I hadn’t seen since living in Townsville, my home town.
Something happened to me that
morning as I sat in my car. I think it all finally hit me. I had come to the
realisation that I really did have a chance of survival. I was alone in the car
and that was what I needed at the time. I completely broke down into tears, but
they were tears of joy and hope. For the first time I believed I was going to
live. I had endured a living and sometimes not a living hell for some time. I had been poked, penetrated, sliced, sawn, sewed, zapped and burned. The only section of
the hospital I hadn’t used was the gynaecology unit and I’m sure if they could
have found a way they if they could have. I was so emotional I needed to celebrate.
That Saturday I found out where my
old cricket team was playing and decided to go down and let the guys know I was
alive and was keen to make a comeback if they would have me. Not only were they
happy to see me but they were also very protective of me. The following week I would
rejoin the team and play at Victoria Point in Brisbane which was also the site
of my last match 18 months earlier where I had taken four quick wickets and
saved our rear ends as we were in trouble in that match. I was coming full
circle.
I was really in no condition to
play yet as I could not run plus I did not yet have full confidence in the
structural strength of my sternum after the operation. Still I was never very
good as keeping my distance and watching so I jumped in the deep end so to
speak and agreed to open the batting as I had done all my life. After an hour
or so I was being sledged as usual with the fat jokes flying as they always
did. It was the best thing the opposition could do as it always helped me when
people made fun of me and insulted me on the sporting field as it help me
concentrate and made me more determined. I was unable to run. I reached my
fifty just before lunch and when we took the break for lunch I went over to my
car and got some dry inner gloves and dried out the ones I had been wearing. I
also wanted some time alone to relax and think about what I was doing. Little
did I know something very special was soon to happen.
I resumed batting after lunch and played the
anchor role as a couple of the young fellas came out and did their best David
Warner (famous Australian cricketer) impressions. Unfortunately I couldn’t run
and all of the times I could have run for three runs I had to walk for a
single. I also noticed that all of the sledging and insults had stopped. I eventually
played a stupid shot and got myself caught out for sixty-six runs, a score that
easily would have been a hundred if I could run.
Then it happened. Every single
player on the field ran over to me and shook my hand and started paying me the
most amazing compliments. My own team and everyone who was at the ground gave
me a standing ovation as I left the field. I was really embarrassed as I was
being feted as if I had scored three hundred runs. It turns out that at lunch
one of my team had walked over to the other team and told them this was my
first innings back after having the heart transplant and kept it quiet from me.
I have been lucky enough to play
sport at a reasonably high level in my life without playing at the top level
and have experienced some wonderful moments on and off the field but this was
incredibly meaningful and truly emotional. It also showed me that people were
capable of putting aside cynicism and recognising something very special when
it occurs at any level of sport.
I have been asked down through the
years why I haven’t got involved with the Australian Transplant Cricket Club
and my reason is simple. For me it is a far greater achievement especially at
the age I was playing before I had to retire to play alongside and against
players that were young, fit and had no disability issues even though I have.
If I can score runs against those youngsters then the achievement is far
greater than going out and playing with and against people who have similar
medical issues to me. Besides I don’t believe the awareness they claim to have
raised is true in any way. Unfortunately most serious causes have become
industrialised these days and people have forged careers in these fields and I
find that quite unseemly at the very least.
More medical roller coaster riding
was to come over the next few years.
