Why Talking About Organ Donation Can Save Lives

The Roller Coaster No-One Wants To Be On

Organ Donation Blog

The Roller Coaster No-one Wants to Be On

In 2016 my family was hit with an emotional roller coaster. My husband was rushed to Papworth Hospital and placed on the urgent waiting list for a heart transplant.

After weeks of waiting on the outside. Feeling utterly helpless.  The phone call came, telling me that a possible heart had been found.

The kaleidoscope of emotions that bombarded every inch of my being is impossible to adequately describe.

organ donation blog

so many mixed emotions

I felt out of control. Everything spiralled into a vortex of hope, fear, excitement and nausea.

And underlying all of the above was one other feeling.  The feeling of guilt.

It was subtle for sure, in comparison to all the other emotions that collided and collapsed into each other as the news sunk in.  But it was definitely there.  Lurking uncomfortably amidst all that hope.  Whispering to me that as my family was being offered a lifeline, for some other family somewhere that lifeline had been taken away from them.

Then the emotional roller coaster eased into a different gear, as I was told that after undergoing lengthy testing, they were unable to use the heart in this case.

What do you do when this happens?  What can you do?  There is only one thing you can do.  Continue to wait.  And hope against hope for the next time.

organ donation blog

Never lose hope


All the while trying to ignore that persistent little whisper ‘your just waiting for someone else to die.’

Logically you know that is not the case.  Logically you know, from all the personal accounts you make it your business to read, that donor families gain some form of comfort in knowing that their loved one has done an amazing thing.  From knowing that their loved one has passed on the most amazing gift ever. 

And I did, on some level know all of this.  But for me anyway, that sense of guilt subtly, but stubbornly refused to budge.

I had two more phone calls like the first one.  The  kaleidoscopic assault on the senses was just as vivid each time.  And yes, the devastation you feel when, for whatever reason, the heart cannot be used hits you like a ten tonne brick each time.  But thankfully, for me anyway that lurking,  unjustified whisper did start to recede.

Eventually reality sunk in.  The reality that, sadly, the donor would have passed away regardless of whether my husband received their heart or not.

And then a miracle happened.   Another phone call.  And then you get the news that yes.  This is it.  This time it really is happening.

Art 4 A Heart Powertex

So grateful to the donor family for giving their consent

And after hours, and hours, and hours in surgery you get to see your loved one.  And your loved one is totally away with the fairies.  And battered and bruised.  And looking pretty damn rough.  But they have survived.  They have made it through.  They are alive.

The gratitude we as a family have, will always have, to the donor and their family is impossible to convey.  We think of them often, and raise a glass to them when we gave a toast at Christmas.  And on special occasions.  And will continue to do so. They are never far from our thoughts.

organ donation week

never forgotten

The guilt I felt has completely subsided now.  I am now at peace with the wonderful gift that has been given to our family.  And we give thanks daily.

The most important message, I think, for Organ Donation Week, is stressing the importance of letting your family know if you decide to join the donor register. Sadly, the one of the main reasons for transplants not going ahead is that grieving families don’t give consent for the procedure to go ahead. If they know beforehand (and I appreciate it is not always an easy conversation), that this is your wish. They are much more likely to be prepared for the question, and to honour that wish. Please, please, please have that conversation

organ donation converstion

Talking about organ donation really does save lives

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