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In childhood I was diagnosed with a genetic condition called cystic fibrosis
and CF as it's known affects a number of different organs in the body but
primarily the lungs and there's a problem with thick sticky mucus that is a
brilliant breeding ground for bacteria causing repeated lung infections and
blockages that lead to irreversible lung damage. So by the time I was in my
early 20s I had a lung function of about 30% of a normal person. As I got older
and it affected me more I needed to move back home with my parents because I
wasn't able to manage sort of basic activities that you do every day like
showering without some help from my parents and I was on oxygen and could
probably only walk about 20 metres without needing to stop to rest to catch
my breath. Survival rates at that time for lung transplants weren't great so it
was a very very scary prospect and from the time that they first mentioned
lung transplant to me to the time that actually agreed to actually progress and
have the assessments for transplant was over a year because it was just so
scary but it was really that realization that without a transplant
things were just going to get worse and I would die. In order to be assessed for
lung transplant you have to go over to Melbourne. So Mum and I flew over there
and I spent a week in hospital having a full range of different tests and
assessments to make sure that I would be a suitable candidate for a transplant.
In fact I often say to people it's a little bit like running a marathon, have a
transplant. You've essentially got to be able to run your your heart, your body's
got to cope with three or four hours worth of very intensive surgery, sometimes
longer if it's a lung transplant. If it's a kidney and a pancreas that we might do
for say for diabetes that's a 12-hour operation. Lever transplant can be
anywhere up to 10 hours so long operations need very good strong hearts
that's probably the the probably the major perhaps most important thing. We
look at the individual in front of us and we say do we think that that person
has got an 80% chance of being alive in five years with it with the transplant
that's 80% five years and if we think that's the case in general then we'll
go ahead and list them. We're talking about a very scarce community resource
you've just heard from you know Bromwin that where we're dealing with only
330 you know organ donors in the whole country in a population of 20 million
that's not very many so we would like to offer transplantation particularly the
kidney to to to everybody if we possibly could it's the best form of
treatment we can give you for kidney disease but the reality is that we we
set it at a very arbitrary age cut off at about 70 people get to a point where
they're critically ill and they need an urgent organ we have the ability in the
country to to be able to prioritize those people. We have a marvellous immune
system and it's an immune system that protects us it protects us against
infections it protects us against cancers and it's absolutely terrific and
it's evolved over over million and millions of years to do that and there
are specialized white blood cells which circulate go through all of the organs
of your body constantly looking at what's being expressed on the surface of
your cell and your cells constantly looking at what's being surface expressed
on the surface of those white blood cells and the minute either one of those
sees something that's not quite right and immune reaction starts and that
immune reaction protects you it's what protects you against the flu it's what
protects you know what protects us against developing cancers and and
things like that. We then take that organ we put it on ice you know which is a
pretty unnatural thing to do often we'll put it in an aeroplane and we'll fly it
from Darwin to Melbourne or you know all over the place to the person that needs
the organ it'll be sitting out of the body out of its nice warm environment
for you know six or eight or you know up to 24 hours and that process further
enrages the cells that are sitting inside that organ so then you can imagine
when you put that into somebody and you take the clamps off from the blood
vessels you've got a you've got a stream of very angry cells sitting inside that
particular organ that are primed to look for something foreign that then go out
into the into the circulation of the person who's getting the transplant
looking for trouble and the science of transplantation is to try to to try and
diminish that that particular inflammatory response. The science of
tissue typing that Rhonda does is to try to minimize that by having tissues that
are so compatible that it's they don't seem as foreign to each other. These are
all apples obviously but they're not all quite the same apples and that's a bit
like us in our immune system you know it's it all works the same but there's
little shades of differences and and our job is actually to define those
differences at a DNA level and at a cell expression level and to work out
between individuals between the donors and the recipients what the tissue type
is and what's the best match. The lab has to define both the antibodies and the
tissue type the HLA type that's in in the patients and also the tissue type
that's in in the donors and we do this by a whole range of different techniques
and technologies so we type the cells we actually test all the cells in the in
the patient and in the donors we do DNA sequencing. We know that the immune
system has some bits of this that recognizes more keenly than other bits
there are some parts like hotspots that are more reactive and trying to match
those by selection rather than trying to match the whole lot might enable us to
be able to target the matching process a little better it doesn't have to be an
exact match but it can be an immunological match. Often several of us
can be up on a phone call at three in the morning Toby's really good at setting
these really complex text messages in the middle of the night about all the
different antigens and all the different things and and certainly you know and
whether this particular patient's going to match for this particular a
particular data is going to match this particular patient so there's a lot of
discussion that goes into a lot of care a lot of attention unlike yet the
outcome to be the best possible outcome for the patient. So if we get a terrific
match for for somebody from from you know
Queensland let's say we will ship an organ from from South Australia or from
Western Australia to that particular person because we know that those two
organs because they're those HLA molecules that were on the show you
before match close so closely they are more they're less likely to get
rejection and that organ should do better better in the long term. We have a
system that enables us to prioritize children to get transplants under under
a variety of circumstances but no no for example with the kidney no child will
wait on dialysis longer than 12 months and if they get to 12 months then
immediately they go to the top of the list and they will get the next available
organ that's cross-match negative nationally. It's a complicated business
and so well the national organ allocation system is sent usually usually in
the middle of the night I can tell you that it's usually about two o'clock in
the morning and it's usually about 60 pages long when it comes through to you
on a PDF so usually up for about two hours scrolling through these sheets and
sheets and sheets of paper. The lab do a great job they usually identify the most
likely recipients and they'll usually with a indicate where there is an
antibody there but you still actually have to go through manually and check it
and quite often you're ringing back to the lab saying you know is is what you
said really true you know can you double check can you make sure that this
cross-match is okay. This is a very interesting job science nowadays can be
a bit automated and you sort of put a sample on one end get a result out the
other in this particular field you get to learn a lot as you go but we also are
very demanding and we expect people to have to study and learn and learning the
HLA gene it was easy when I started there were only 12 genes that was a long time
ago I was a child and and of course now there's over 8,000. What kind of timeline
are you working to to have everything settled for instance Toby Ronda you
too like to make sure that then that first incision can be made. Lungs we try
to try to get in as quickly as we can sort of six to eight hours at sort of
maximum if we can if we can avoid having them out of the body that long so we try
to do although there been some very interesting new developments in the
last couple of years pioneered at the Alfred hospital was mentioned before
about resuscitating lungs on a if you like on a scaffold or on a rig that it
can actually improve their function if you like precondition them before they
get transplanted and that's Greg Snell over there did some fantastic work
world leaders in Australia for the kidney or old kidney we can keep them I've
seen them out for 24 hours and expected them not to work and then in they go
and they work straight away and then I've seen them that we've transpired of
four hours and they shut down for six weeks so it's you know you can't predict
it. Sam what was your experience immediately after you've had the
transplant? I started on a number of different immunosuppressant medications
straight away and it was a very intense period of very close monitoring to make
sure that the levels of immunosuppressant were not too high that you open to
infections and those sorts of problems but not too low that you would have
rejection of the organ so there was very frequent blood tests and lots of lung
function type tests and biopsies to make sure that there was no rejection. How long
were you in hospital for? I think I set a record at the time I was in for 12 days
which was pretty amazing at the time yeah and so I was up sort of in intensive
care for two days before I went back on to the ward and then was down in the gym
having physiotherapy and walking on treadmills and stuff within about six
days. Wow. I had broken ribs and stuff from the surgery so that was pretty
painful but just in terms of being able to breathe and not coughing and gasping
for air was pretty amazing and to be down walking on a treadmill being able to
walk further than I'd been able to do for that say the past 10 years without
oxygen without needing to stop was pretty amazing. When that organ was
transplanted and was taken and removed there are a whole lot of we call them
passenger leukocytes, passenger white blood cells and they're literally that
they're the cells that as I said they're always streaming through your body all
the time so when you take an organ out to transplant it it's going to have a
whole lot of cells that are sitting in there that were just doing their job
anyway so you take them out and they've been stressed by the process of the
person dying and then you put them and you transport them and that further
stresses them and excites them and then transplant them and the first thing they
do is as I said before go looking for trouble and it's just as Sam was saying
what we're trying to do is suppress the immune system enough so that it doesn't
fight the the transplant but gives the the other side of the immune system
enough strength to fight infections and fight cancers and do all the other things
it's supposed to do. Like in Sam's case the transplant unit will and so
especially for the kidneys will start sending the lab regular serum samples
if they think there's any hint of rejection occurring they want to know
what's happening and so the lab will receive a lot of cells and serum from
the patient and and then we'll retest them and see if the antibody levels have
gone up or if there's been a change in sort of different types of antibodies
that might be in there and so at some and that can go on for a couple of weeks
till it settles down again or it can be nothing you know nothing's happening for
a couple of weeks and then four or five weeks later suddenly there's a bit of a
reaction that can occur. We need to know and everybody needs to know what's
happening in the patient post transplant what the immune system is doing and
which which bit of the fight is winning which bit is losing and how we can then
adjust drugs which Toby then uses that information to address them adjust the
medications to try and tone down so it's a bit like an unruly class where you know
the back corners misbehaving and then the front bits playing up and you're just
trying to kind of settle them all down and get them all in that nice even state
and it's not that simple because there's so many different aspects and each
transplant each organ tissue expresses the immune system differently and
there's different drugs you know they affect all the like Sam will tell you
the side effects from some of the drugs is quite different as well at any time
when they where the clinical unit think there's any hint of rejection of the
graft the lab gets some sample sense straight away and we might go back and
re-cross match or we might you know so we actually store and freeze away donor
cells from the organ donor we store some for reference for later so that we can
come back and redo a cross match and that might be a couple of years it just
depends on the situation what's your life like now so it's 14 years on how has
your life changed there's still a whole range of different monitoring and
maintenance things that I need to do as a result of having the transplant and
the immunosuppressant medications that I take so I still take all the medications
that I took at the beginning but just at slightly lower doses and I still have
regular follow-up appointments with my transplant specialist to monitor how my
lungs are going chest x-rays lung function tests and still have those
regular blood tests to keep an eye on the level of immunosuppressant that's
around and because of the the side effects the long-term side effects of
those medications I now have a range of other chronic conditions that I need to
manage as well and it's really just about minimizing your risk of infection
because you immunosuppress so activities like gardening when there's lots of
bacteria in the soil is a risky thing to do if you've got pets and you have to be
careful about scratches and cleaning kitty little trays and things like that
so yeah there's a whole range of different things that is still need to
be really vigilant about and monitor quite closely so still quite a lot to do
our post-transplant but I certainly don't mind not having to clean the kitty
little tray and I don't really care that much about gardening so I'm perfectly
happy to delegate that to my husband and let him take care of that yeah so
there's some there's some upsides to be immunosuppressed interested to hear that
the organ which is being transplanted in from the donor has its own immune
response to being transplanted into the recipient and I'm just wondering what is
that mechanism does it call on the recipients whole system to respond yes
yeah it does it's about 90% of the rejection that we see is started by the
transplant itself so it's actually it's actually the immune cells it's the as I
said before the passengers that are in that organ that actually drive that
rejection process and that's the process that happens in the first week and
it's the strongest type of rejection that we see it's nasty difficult to treat
rejection when it actually happens the rejection there although the
transplant starting it it's the recipient that's causing it so the
transplant makes it happen says hey look I'm foreign you know I should be here
you know and all the all the recipients body is doing is doing exactly what it
should do and saying hey there's a great big invader in there let's fight that
invader but it's a acute rejection starts because of generally because of the
transplant the other type of rejection is what we call chronic rejection and
that is predominantly from the the recipient recipient's body and that's
the sort of rejection that that's about 10 to 15% of the rejections that we see
that's a much lower level and it's a much chronic much more chronic process so
that's the sort of stuff that can happen five seven ten years down the track
rather than within the first week that's a good question as donate life says you
you talk to your family and talking to your family and your friends it is the
single most important thing that you can do
