The Wait

Waiting - 

                       

   What type of person are you when you're waiting for something to happen ? 

Are you inpatient ? 

Do you remain calm ?

Are you excited ? 

Are you scared ? 

Do you remain positive....hopeful ? 

What if the wait is prolonged with no end time ? It could be days, weeks, years or never as time could run out. 

Could you live like that ? 

This is how it is for those living on the transplant list.  They are in limbo , lives on hold, not just their life but the lives of their close family members too. Not only are they waiting at the same time their health is deteriorating for some the deterioration is slow for others its rapid leading to multi organ failure and they then need hospitalisation and life support. Then the family becomes split. This then makes the wait even more unbearable . Also you know time and options are running out. It's a daily battle to keep the person "well" enough to receive a transplant. 

My family was lucky we were spared the wait as Eloise was transplanted 24 hours after being listed. From diagnosis to transplant was a short sharp three weeks. No time to think too much, to ponder the ifs , whys and maybes. I didn't appreciate then how lucky we were, why would I things were pretty hideous. Now I know we were spared the gut wrenching wait. I know when we were at the Freeman pre transplant they asked if we'd like to meet another family, one with a post transplant child. We declined, deciding we didn't need to learn about something that might not happen for us, an organ might not have been available for Eloise. 

Now I've been a spectator while other families have waited for their loved one to have a transplant. It's hard to find the right words to say sometimes, to give words of encouragement and hope. It's hard watching little ones fight so many battles to survive, children the same age as Eloise was. Seeing them covered in wires knowing only another family can save them by donating their child's organs. No one wants to think of a child dying it's not the right order in life. The wait can have other implications , daily life comes with expenses . People have mortgages, homes that need maintaining, bills to pay, families to feed etc. This just adds to the worry. 

It's not as if a transplant can be scheduled in , it must be hard waiting for a cataract operation or a hip replacement both debilitating but you can be given a date for your procedure. You're not only waiting for someone on the organ donor register to die and their family to say yes. You're waiting for your match. Blood Group, Tissue type, organ size etc all have to match and you need to be top of the urgent list, oh and stable enough to withstand the operation. The odds just seem stacked against you. Thankfully for most of my #transplantfamily the call comes in time, as a group we've been lucky but occasionally luck runs out. Recently we have learnt of Mr P his wife joined our group after he passed away waiting for a transplant call that never came. We also followed baby Willow's story and sadly she too passed without receiving a heart transplant. It makes us realise how lucky we have been , lucky that our loved one received an organ just in time. 

      So thank you to all the amazing donor families who have spared us grief when they were grieving. I hope you all know how much you mean to us. We remember your loved one and live life to the full, looking after the gifted organ. 

                        

    So think about it decide if you or a loved one could survive the agonising wait knowing that 17 million people haven't made their decision about organ donation. Knowing only 31% of people in the UK have signed the organ donor register. Knowing 3 people every day die waiting for an organ, real people not just statistics. I'm sure if someone you loved needed an organ transplant you'd be here campaigning with me, you'd see how desperate it can be . You'd see how frustrating it is that 96% of us agree with organ donation in principle then for whatever reason don't bother to sign up to the register. I just cannot understand why. Dead is just that , why not spare someone else death when your own death is inevitable ? Please help me get more people on the register #onemore person can potentially save 9 lives. I know I've already got 6 people signed up this week so a few more would be great ! 

   Eloise's story could have ended right here 9th June 2002 on a ventilator at The Freeman Hospital in Newcastle. 

       

But her story continues ,13 extra precious years, and each year is another chapter.........