Me and H (3) “Time of death, 12.59pm.”  When you hear those words you expect a Holby City-style switching off of machines and delicate draping of a sheet, but if organ donation is a possibility, it’s just not like that.

When Auntie H died suddenly of a brain haemorrhage last year, that time of death, on a Wednesday lunchtime in London’s National Hospital for Neurology and Neurosurgery, was just the time H checked out, but it wasn’t the time for her organs to go with her.  The ventilator kept her heart beating and the oxygen circulating while the Organ Donation team installed us in a private cry-as-much-as-you-like family room for a ‘chat’.

According to a super brainy Swiss psychiatrist, there are five stages of grief – denial, anger, bargaining, depression and acceptance – and, lucky for Organ Donation team Sarah, a couple of hours after death you’re firmly in zone ‘denial’.  This means the tricky ‘organ chat’ is rather more jovial and civilised than you’d expect.  In fact we laughed so much it felt almost irreverent.

Being an organ-donor-chat virgin, one thing came as a massive surprise.  Even though Auntie H had a donor card, and was on the NHS Organ Donor Register, the family is still consulted for its consent.  Do we approve organ donation?  Tissue donation?  Parts of her eyes?  If we (niece and H’s two sisters) felt we couldn’t support her decision, the donation wouldn’t have gone ahead.  After a nanosecond’s thought, our unanimous feeling was “if that’s what she wanted, that’s what shall happen”.  So the chat moved to phase two.

NHS_Organ_Donation

Phase two is an extraordinarily lengthy and detailed questionnaire where Sarah tries to ascertain if there’s any reason why H really shouldn’t be trusted as an organ donor.  It’s a bit of a blur, but I recall “Where has H travelled recently?” (Erm, where hasn’t she?  We got as far as Kenya, Italy, Cuba, Mexico, the Netherlands, Russia, Vietnam, the Baltics, Australia, Portugal, Chile, Spain, France and Scotland before Sarah halted us) followed by “Has H had any tattoos?” (Gosh, think not, but couldn’t be 100% sure, depends where it is) and (the one that had me giggling far too much) “Could the donor have had intercourse with a man who previously had intercourse with a man?” (Blimey, can we pass on that one?).

It was then over to us to ask our questions.  With H lying just a few metres away in a ward, heart artificially beating away, our main concern was what would happen next, how would she be treated, would it be with dignity and respect.

The first step (guided a little by the aforementioned Q&A session) would be a series of tissue and blood tests to ascertain whether H’s bits and bobs were in a fit state to be of use to anyone else.  If yes, a ‘normal’ operation would ensue.  It was a great comfort to learn that H would be treated the same as any ‘living’ patient in the operating theatre, most certainly with dignity and respect, skilfully stitched back together afterwards and looking neat and presentable.

Me and H (1)

Without wishing to make anyone upset or squeamish, we also asked about her eyes, how she would look in her coffin (I know, unless you’ve been through this, this is odd uncomfortable reading) and the response was that, post-death, the fluid and plumpness leaves a body, and the eyes would recede regardless.  It’s normal practice to pop plastic caps under the eyelids anyway.  H would have these, H would look the same as any other lovely lady in her coffin.  So yes, if you’re wondering, you can still pay your respects in a chapel of rest, don’t worry about ‘disfigurement’.

Sarah was literally the best candidate on the planet for this role.  Warm and compassionate, smiley and friendly, patient and calm, fun and tolerant.  She was a true superstar to the bereaved.  I for one will never forget how she handled our situation so well.

It turned out that various markers were too high for H to be a suitable tissue donor (her body had perhaps fought a little too hard at the end) but her organs were a go go.  So a final (heartbreakingly-awful, gut-wrenching, desperately-frightening, life-changing, tear-flooded, unbelievably-cruel) goodbye, and H was off to theatre to bring magic to those who needed it.

It would be a short while before we knew if the NHS had found any matches, any candidates who suited her blood type, age range and so on, so we got on with the next four stages of grief and drowned in the interminable admin that surrounds death, from telephoning friends to notifying the register office, funerals to headstones, tax returns to house clearances.

A few weeks later we got a letter that would bring us all to tears.  But, speaking for myself only, the proudest happiest tears I had ever cried.  A gentleman in his 50s had received a life-changing kidney transplant thanks to H.  He had been three years (THREE YEARS) on the waiting list and receiving dialysis for three and a half.  Married, with children, this would mean the world to him.  The op went well.  A lady in her 70s snaffled H’s other kidney.  She’d been waiting eight months and been on dialysis for almost a year, her op went well too.  And (cue much laughter, H was a whisky author, connoisseur, collector, drinker…) her liver (yes, liver!) was in great nick and a gentleman in his 50s was on the receiving end.  Married with twin boys, he’d been waiting just under two years.  Her eyes were ‘on ice’ waiting the right moment, and could potentially benefit up to 12 people.

It’s almost impossible to commit to paper how this made me feel.  I could just imagine the faces of the recipients as they were told “we’ve found a match, you have a second chance at life” – all because of Auntie H.  It goes a vast way to taking away the pain of losing someone you love so suddenly and so (comparatively) young.  I wanted to crack open the champagne and do a victory dance for these precious patients – and their families.

Me and H (2)

Six months later, we got another update.  Part of me dreaded reading it.  I feared the word ‘rejected’.  I wanted H’s story to continue being one of joy and success.  Having summoned up the courage to take a look, I cried again at the news that 50s gentleman was off dialysis and enjoying life, 70s lady was enjoying excellent renal function, and 50s gentleman had taken H’s whisky-enhanced liver on holiday to Spain.  H went to Spain every year, she would have been thrilled that the tradition was continuing.  We had extra amazing news that H had restored the sight of two people, a lady in her 30s and a gentleman in his 50s.  Just imagine – sight restored thanks to H.  The tears flowed again, once more the proudest happiest kind.

Auntie H’s headstone reads “A Life That Mattered”, because while she was alive she helped, supported, inspired and delighted everyone she met.  The phrase feels all the more poignant now we know that her life continued to matter, even after we said our goodbyes.  Just the knowledge that her kidneys, liver and eyes have changed, even saved, several people’s lives, fills me with happiness.  We’ve lost H, but she has given life to others.

Please please please make the ‘right’ decision when it comes to donating the organs of yourself and your family.  On average three people die every day across the UK due to a shortage of donated organs.  Don’t let your ‘end’ be ‘the end’ for everyone.  Let it also be a new beginning…

Take a look – Organ Donation Week (UK) – 5 – 11 September 2016

Comments (3)

  1. Wonderful story Sarah, the only thing I would add in is the donating we can (almost) all do right now – giving blood. I’m always immensely proud of how many people of my age and younger I see at the sessions, though apparently only 4% of those eligible to give blood in the UK actually do so.

    1. Beautifully written Sarah, made me cry and smile. X

  2. That is a brilliant blog!

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