Chris Williamson MP
Chair, All-Party Parliamentary Group for Transplantation
@ChriswMP
Speakers panel:
Dr Paul Murphy
National Clinical Lead for Organ Donation
Keith Rigg
Past President, British Transplantation Society
Jacquie Spencer
Team Manager for South-West organ donation
Professor Martin Lombard
National Clinical Director for liver disease
Dr Katz
Chief Rabbi’s office
Some of the people making valuable contributions to the debate
Chris Bryon -Edmund , whose daughter Lottie was the youngest baby in the world to survive liver transplant:
www.chipbe.com
Twitter: @ChipBEblog
@iLiveiGive
Sue Reid, Aunt to Will Pope, who is waiting for heart transplant and featured on Tonight's programme, 'Waiting for a Heart'
Twitter: @PopePower
Facebook: Let's Raise Awareness for Will Pope & Organ Donation
Steve Gazzard, who lost his daughter Sarah recently waiting for transplant and is now doing great work increasing donors in Exmouth
Facebook: Steve Gazzard
Speech Draft
Good
morning, my name’s Rob Graham. In a minute or two I will introduce you to my
wife, Kathryn, but first I want to give you a little background about us, our
life before Kathryn was diagnosed with a serious heart and lung condition and a
little bit of an explanation surrounding the condition itself.
Until
just over two years ago, we were a fairly average couple with two teenage
daughters. I was working full time in the City and Kathryn was a successful
full time primary teacher. We enjoyed many normal things as others do:
travelling abroad, spending time outdoors - we love the countryside, especially
the Lake District where we would walk for hours - gardening and meeting up with
family and friends and making the most of having London just half an hour from
our doorstep.
In
just one day in June 2010 our lives were changed forever when Kathryn was
diagnosed with serious heart failure as a result of a previously undetected
lung condition. Within six months we both had to give up our careers and many
of the hobbies we loved doing. Kathryn
was referred to Papworth Hospital , one of the few specialist hospitals in the
country who can treat her disease and, under their care, I am delighted to say
that Kath is sufficiently stable for the time being which has enabled us to be
here today – that said it has been a major effort on Kathryn’s part to be here
- this is in fact our first trip into London together for over 2 and a half
years.
We
have experienced just about every emotion imaginable. Two of my low points were
the day we were told that she had severe heart failure and the day I had to
dial 999 after she had an unexplained seizure and I could see her heart pumping
against her chest almost like it was out of a cartoon. If I’m being totally
honest with you, and I haven’t told my closest friends this, on more than one
occasion I thought I was going to lose her. I wouldn’t wish anybody to have to
go through similar experiences.
So
what is the condition that Kathryn has? Idiopathic Pulmonary Arterial Hypertension.
It’s a bit of a mouthful, isn’t it? Most people when they hear this, just pick
up on the word “hypertension” and they usually nod knowingly and then tell me
that they’ve got a bit of high blood pressure as well. If only and we wish….
In
fact PH, as it is known in our world, is a very rare condition and it is
generally described as a narrowing and hardening of blood vessels and arteries
in the lungs which causes the blood to struggle through, building up high
pressures in the pulmonary arteries which carry oxygen to and from the heart.
The right side of the heart then comes under considerable strain as it works
harder and faster to pump the blood carrying oxygen through the narrowing
arteries, and this can eventually result in heart failure.
PH
is often secondary to other conditions – blood clots, autoimmune disorders and
congenital heart disease or, as in Kathryn’s case, it can start on its own as a
result of a genetic mutation and it may, therefore, be potentially hereditary -
we are currently partaking in pioneering genetic research to see if our
daughters might have the mutated gene. The type of PH that Kathryn has is,
unfortunately, without transplantation, incurable and progressive.
There
are various drugs that can be used to treat Kathryn’s condition but these only
serve to alleviate the symptoms, improve the quality of life and slow down but
not stop the progression of the condition.
So
what is it like having PH and being on the transplant list? Let me hand you
over to the expert – my wife, Kathryn.
Hello everyone,
thanks for giving me the opportunity to speak about my condition.
Well, the main
symptoms are breathlessness, extreme fatigue, dizziness, fainting and chest
pain. These can happen undertaking the simplest of tasks therefore limiting
dramatically what you are able to do in a normal day.
I usually need to
rest and sit down after ten minutes of mild activity and can only walk at a
very slow pace for about ten minutes before I get breathless ad need to sit
down. At worst I used to faint doing the simplest of things such as getting out
of bed or just bending down as my heart couldn’t cope with the strain. For
someone with PH, even climbing the stairs can feel like conquering Everest.
Two years ago and
only a few months after diagnosis, my PH symptoms were classed as “end stage”
and along with a general host of drugs to help my body – I take around 12-14
tablets a day – I had to be placed on 24/7 intravenous drugs as an emergency
when my heart began to give up. I now have a Hickman Line catheter in my chest
and carry a small machine, which pumps drugs direct into my heart and pulmonary
arteries. It can NEVER be disconnected and I can NEVER be late changing over
the drug in my pump machine, which has to be done twice a day.
Making the drug
is complex and I need help with this, so not only did I have to become
competent at it before I could be discharged from hospital, so did Rob. The
line and pump need quite a lot of maintenance which comes with its own set of
problems; infection is always a high risk as it could go straight to my heart
and lungs and into my bloodstream which could be fatal. I have had to be admitted to hospital on a
number of occasions to rule out infection; I have also spent weeks to-ing and
fro-ing to both Papworth and Addenbrook hospitals when I became allergic to
some of the equipment.
My medication
causes a number of unwelcome side effects: headaches, nausea, stomach upsets,
skin complaints, joint pains are but a few and a daily occurrence, but a small
price to pay for being alive, though at times they can be extremely
debilitating and be just one thing too many.
There was a point
last year when my body was struggling to endure an increase in the intravenous
medication and that is when the consultant told me I was being referred to the
Transplant team at Papworth as she shared my concern about my ability to
withstand any further increases and the IV drug is usually the final weapon
that they use against PH.
I was listed for
a heart and double lung transplant a few months later and to be sat down with
the Transplant Consultant putting all your cards on the table is a harrowing
experience. When you get to transplant then you know you have got to the end of
the line and it is the very last door to be open to you to overcome your
illness.
For PH patients, from
diagnosis at least 50% survive longer than 3 years with treatment, but when we
met with the Transplant team, because of the pressures in my heart, it seemed
highly probable that I was looking at just 2 years life expectancy. I have now
been on the transplant list for 14 months.
Being placed on
the list has given me new hope as I try to deal with the daily grind of this
illness and the constant hospital visits. I try to be positive about my future
and try to enjoy the things that matter most to me now, but all the time there
is a feeling of being in ‘no mans land’, that the illness will come back with a
vengeance and it will be too late, like it has been for several of my friends,
but there is a light in front of me, which is transplant and I might escape
from what feels like is a hopeless situation at times.
I can only dream
of waking up in a morning and feeling well; to be independent again; being able
to go for a proper walk and not having to use a wheelchair; being able to
travel abroad and just travel more than an hour away without having to ring the
transplant team; not having to cancel one thing after another because I’m too
unwell to go and Rob would be pleased if I could do some work in the garden
rather than ordering him around. It would be good not to have the catheter in
my chest and be able to bathe properly for the first time in years. It would be
good to get some purpose back our lives rather than fighting this illness.
In the meantime,
I wait in the middle, but with the chronic shortage of donors it is getting
harder and harder to keep faith that all may end well.
Despite
everything you have heard we actually count ourselves quite fortunate.
Diagnosis of this deadly disease has happened to us during middle age, others
are not so lucky; PH is just as likely to affect babies, children and young
adults as it is those in later life. However, whatever your age there is always
something to live for.
There
will be many people of all ages and with other diseases sharing our predicament
and having a similar story to tell. The fact that we are all here today proves
there is a strong will to increase the number of donors signing the register.
At
the moment, according to the stats 96% of people would accept an organ if they
needed one, but less than 30% of these have actually signed up to the register.
We can to some extent understand this complacency as it is often difficult to
feel connected to major issues when you are not directly affected by them. We firmly
believe that there are many people who would sign up if they were more aware of
the issues somehow or if the ‘opt out’ scheme that is being discussed is
brought about.
At
the same time we do appreciate that organ donation can be a sensitive issue and
there are both moral and religious grounds, which need to be respected too.
Tapping
into the majority of people though, would not only reduce waiting times for
donor organs, but would also help to address less appealing stats such as the
fact that 40% of lung donors are smokers. It would also help expand the
categories for urgent donation, currently there is no urgent list for people
waiting for heart and lung transplants as there is for people who are waiting
for heart transplants, pushing us further down the list.
It
is seven days since we were asked to speak to this committee, since then 21
people like Kathryn will have died while they wait for organs. I don’t want
Kathryn to become one of these statistics. Thank you for listening to us.
