Norwich widow talks about her search for support and work to help others bereaved at a young age
Little more than 20 months on, Rebecca Farwell reflects on her feeling of 'absolute desperation' as she tried to cope with her husband's death.
Keith, her husband of almost 20 years, was diagnosed with kidney failure not long after they got married. His condition was managed successfully for several years, though deterioration in his health in early 2010 left two options – dialysis or a transplant.
Rebecca, of Cecil Road, Norwich, offered her kidney and said after 'fairly gruelling tests' she was approved to donate. The transplant took place in October and the kidney worked well for her husband.
Rebecca, 50, said: 'We were both thrilled and had plans for all the things we would be able to do. However, Keith continued to feel unwell – far from experiencing the improved energy levels he was told he could expect after transplant. He felt very tired. One day he fainted twice.'
After trade mark attorney Keith phoned the hospital to tell them, he received advice not to take his blood pressure medication the next day.
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Rebecca said: 'He did not live long enough to take any more medication. The next morning I found him dead. The cause of death was pulmonary embolism and it is now clear his fainting and so on were symptoms that were not acted on.
'You can no doubt imagine how devastated I was. Far from living to enjoy all the things he had been looking forward to, he did not even survive until Christmas. I had no idea how to cope and began looking for support.'
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While her family provided immense support, Rebecca said she needed reassurance the feelings she was experiencing were those expected after a sudden bereavement at a young age rather than her becoming 'abnormal or strange'.
But the options for the writer were few and far between, with bereavement support geared towards older people.
Then Rebecca found the WAY Foundation on the internet – a charity run by and for people widowed before their 51st birthday,
The charity is open to everyone, male or female, married or not, straight or gay, with or without children.
Rebecca said: 'I found its support and the fact that there were always people who had experienced the same awful things to answer my questions invaluable.
'Being widowed at a relatively early age is a very lonely experience and it greatly helped me to know that I was not the only one that this had happened to.'
And now she hopes to provide the same support and advice across Norfolk, with a network of people willing to meet up starting to emerge.
She said: 'When a plea came for someone to take on the role of area contact for Norfolk, I wanted to give something back and I volunteered.
'My role is to contact new members in the local area and I like to meet new members for coffee and a chat, so I can answer at least some of the many questions widows find they have to ask – and also arrange meetings to give bereaved people a chance to meet up socially with others in the same position.'
But Rebecca, who raises money for kidney research and awareness about embolism to prevent further deaths similar to Keith's, said she felt more needed to be done.
In particular, she wanted to provide emotional support for living donors who had lost someone.
She said: 'The process of becoming a living kidney donor is very demanding, complicated. At various times I had been told by the hospital 'We are taking you as a healthy person and doing something that will make you less healthy' – but also 'At the end of this, you will get your husband back'.
'The build-up was enormous and the subsequent bereavement was terrible, as I strongly believe that if I had not donated a kidney, my husband would still be alive.
'In addition to the more common bereavement problems, I also had to deal with a sense of betrayal, survivor guilt and finding myself apparently alone in a world of successful transplant stories. I felt I needed very specific support to help me with these issues, and searched for it.
'I discovered there is no support, anywhere in the world, for people in the situation of having lost someone through living organ donation.
'Hospitals provide physical medical care for donors, but absolutely no emotional support for those for whom it has gone terribly wrong.
'I very much doubted that I was alone, and as no support existed, I decided to found an online support group for people like me.
'That I was right has – sadly – been shown by the response I have received and by the people who have joined from all over the world, each with their own heartbreaking story.
'I try to offer daily support to these people, tailored to loss through transplant, including information about bereavement, transplants and health matters.'
For more information on the WAY Foundation, visit www.wayfoundation.org.uk
If you are a living donor or recipient who has been bereaved, visit http://health.groups.yahoo.com/group/bereavedbylivingdonation
To support Rebecca's fundraising for Kidney Research UK, visit www.justgiving.com/Rebecca-Farwell