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Tissue donation: The conversation that saved my life | Katy Portell | TEDxLondonBusinessSchool

each and every one of you has the power
to make an unimaginable impact on
multiple lives with just a conversation
my hero did and this is our story
I’m going to tell you about the
conversation that saved my life
but I should probably first tell you why
my life needed saving in the first place
standing before you today I hope you
agree I look pretty healthy there’s
really no indication that I was ever
desperately ill or indeed in need of a
transplant but when I was born my
parents and my doctors didn’t know if I
was going to make it this far or if I’d
live at all I was small I was
desperately underweight and I had a blue
tint to my skin which was an indication
that something was likely wrong with my
heart as it turns out I had multiple
holes in my heart I had valves in the
wrong place and I had an underdeveloped
pulmonary artery which is an important
piece of the plumbing things didn’t look
good and my parents were told there was
little hope whereas most newborn parents
are showered with gifts of blankets and
adorable baby outfits my parents
received a lot of flowers for the first
10 days of my life I was so sick they
weren’t allowed to hold me and when they
held me at 10 days old it was because I
was about to go into my first surgery
and the doctors knew it might be my
parents only chance obviously it wasn’t
I I had a minor surgery at 10 days old
and another minor surgery at 10 months
but these were all temporary solutions
in the long term I was going to need
major corrective surgery so when I was
four years old I underwent open-heart
surgery and my heart was essentially
reconstructed during that operation I
received a very precious gift a donor
pulmonary artery a chart valve
transplant the donated tissue that would
make that surgery and all of my
subsequent years a success from that
moment forward I was able to grow and
thrive I attended school I got good
grades I played sports though never very
well but that wasn’t because of my heart
I also participated in drama in student
government in speaking events I was a
normal lb it’s geeky kid it was a while
however before I was old enough to
really understand what I had been
through and more importantly what I had
received so growing up I heard my
parents tell my story and I eventually
got old enough to understand what had
been wrong with my heart how it had been
fixed and the fact that my future will
likely involve another surgery but
growing up the focus was always on my
heart health in general and I didn’t
really realize I’d received a transplant
until my speech coach encouraged me to
do a talk on organ and tissue donation
and I started advocating for organ eye
and tissue donation and when I did
people started asking me about my donor
who they were what I knew about them and
back then I had to tell people I know
nothing my parents and I we we didn’t
know anything about my donor or my donor
family and I would tell people I don’t
know my doing
name or age or gender I don’t know their
occupation where they lived or what
their hobbies were I felt like I knew
nothing and yet I did know something
when I eventually started telling people
was this all I know
is it my donor have a strong loving
they must have because my donor decided
to give a complete stranger the most
precious gift of all life and I also
knew that my donor must have had a
loving family who in their darkest
moment thought of others and gave my
family hope when they were scared and
uncertain these were my first
reflections on my donor and donor family
more than 10 years ago now and at that
time I honestly thought I would never
know anything about my donor or my donor
family I didn’t think I could and I
didn’t think I’d ever learn about the
conversation that saved my life but
somewhere along the way I found out it
was possible for a transplant recipient
and the donor family to correspond
through the proper channels and even on
a rare occasion to meet now when I first
learned that I was so emotional I
couldn’t even I couldn’t even think
about it it took me years to build up
the strength to even consider writing a
letter to my donor family and then it
took me several years to figure out how
I go about doing that but over that time
I had a growing desire to say thank you
I just wanted my donor family to know
that I was out there that I was thinking
of them and that I was grateful and I
wanted them to know how much their loved
one was loved by me
so eventually I found my way to cryo
life the tissue processor that had
prepared my heart valve for transplant
and they told me some good news
they said yes we can find your donor
family and they invited me to write a
letter and send it through their
organization now / privacy laws
information on both sides is kept
but the details I was permitted to know
immediately about my donor included my
donors age and gender and it was
shocking to be told your donor was eight
years old when he died
I spent weeks trying to process that
information despite the fact that I’d
been four when I received the transplant
I had never imagined my donor as a child
and the thought of writing a letter how
do you write addressing parents who have
lost a child but I still had that desire
just to say thank you so I decided to
open myself up to the journey and I
prayed that this little boy’s family
would be okay hearing from me after such
a long time so one evening I sat down in
my kitchen table and I cried a lot and I
wrote from the heart hello it’s hard to
know where to begin
I thought about writing this letter for
a long time but it’s still hard to find
the words I want to start by saying I am
so sorry for your loss I can never
imagine the pain you have felt when I
learned a few weeks ago that my donor my
hero was only eight years old when he
died I didn’t know how to process that
for some reason I’d always imagined my
donor was older had gotten to live more
life than that I am so sorry and I also
want to say thank you for the decision
you made in that trying time in your
darkest moment you selflessly thought of
others and that is why I am Alive today
it’s hard to fathom that strength and
compassion and love I am the grateful
recipient of a donor heart fell from
your son he is the most in
flew intial person in my life my angel
and my hero
I filled several pages in that first
letter and then I sent it off along with
photos from throughout my life and I was
happy I felt very content that no matter
what happened
even if my donor family wasn’t
comfortable writing back even if I never
learned anything about my donor at least
they knew that I was out there thinking
of them a few weeks later I received
this response and I finally met my hero
my life was saved before I was even born
by Philip John PJ wolf the third and if
that isn’t the name of an epic hero I
don’t know what is
PJ is amazing he was a blond-haired
blue-eyed fierce little boy he had the
spirit of an adventurer and his soul
mates was Indiana Jones I can tell he
loved his family very much though I’ve
been told some stories of him getting on
the nerves of his three older sisters
apparently he was a little mischievous
at times and his favorite places were
the school library and the playground
and he had a strong loving heart in this
leather I learned the first bits of
information about PJ and I also learned
about the conversation that it saved my
life see apparently there had been a
story on the news about someone who
needed a transplant and that started a
family conversation the wolf sat down
and talked about what his organ donation
about the need for both adults and
and how would war
jerks and they also talked about living
kidney donation the fact that you have
two kidneys and you can donate one and
live a perfectly healthy life they had
the family conversation and PJ’s mom
said she she went back into the kitchen
finished preparing dinner she didn’t
think any more of it then about 20
minutes later PJ came into the kitchen
and he asked me if it hurt to donate I
said yes but only for a while and the
reward was the other person got to live
he looked at me and said he had thought
about it and it would be okay he wanted
to donate a kidney because he would
still have one lift he said I only need
one mom that was it in case you missed
it that was the moment that sent my life
in a completely different direction that
was the conversation that saved my life
PJ’s mom said she was so shocked at his
sincerity of wanting to donate a kidney
it took her a minute and then she had to
tell PJ who was only five or six at the
time that he wasn’t old enough but when
he got older if he still wanted to of
course he could donate they moved on
from the conversation and on with life
and there is a part of me that wishes
his mother never had to recall having
had that conversation but PJ was struck
by a car and passed away at eight and a
half years old when nothing else could
be done for him in the hospital his
family knew what he wanted he told them
my first finished reading this leather
and my crying settle down a bit I just
stared at the photos I’ve been sent and
and I repeated his name over and over I
was so happy to finally know who he was
and I was amazed at what he had done
that my donor who was only a child the
decision to save my life it had been his
and at that point I didn’t think the
journey could get any more emotional
because it’s really quite rare for
recipients and donor families to
correspond like this and it’s even rarer
when so much time has passed and in the
case of tissue donation but it’s even
rarer for the two sides to meet but six
months ago
25 years after PJ passed away I ran into
his family’s arms our two families rang
in the new year together celebrating
life honoring PJ and rejoicing in the
company of what we now call extended
family in spending time with PJ’s family
that weekend who were so generous in
sharing precious photos and memories PJ
came to life for me in a way that I will
always treasure it’s been a very
emotional turn easy kept at this point
but the point is what started at all the
most momentous inflection point in my
life took place before I was born
when PJ told his mom he liked the idea
of donation and he wanted to donate a
you see donation doesn’t happen because
someone dies
organ and tissue donation really happens
because someone has the courage to have
that conversation because it’s discussed
and often that leads to a decision a
life-saving decision and one of the
reasons I share our story so openly even
though it’s still very raw and emotional
is because these conversations don’t
tend to happen enough and I understand I
mean you can see the joy and our two
families as we’ve United but the reality
is it’s not an easy conversation to have
and I recognize that we don’t like to
think about our own mortality and
oftentimes we we don’t get the answers
to a question or or or find out more
information there’s a taboo around the
subject and so I understand that it’s
not always the easiest conversation to
have but it’s also incredible that we
have the opportunity to make these
decisions in advance long before we pass
away we can decide what our last act
will be on this earth and it’s also
incredible the impact these
conversations and decisions can have on
the thousands of people who are waiting
dying for a second chance at life
but if lives like mine are going to be
saved we have to just talk about it
so today commit to converse that is my
request of you talk to your family talk
to your friends talk to your housemates
talk to the person sitting next to you
but let’s talk about organ eye and
tissue donation well over 25 years ago
the wolfes talked about it and then PJ
talked about it further with his mom and
it saved my
life so my question to you all is will
you commit to doing the same Thank You
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