As the New Year approaches NHS Blood and Transplant is calling on families in Devon to talk about organ donation and register their decision to help save lives.
There are currently 92 patients awaiting the life-saving gift of an organ transplant in Devon and many of their lives could be saved or significantly improved if a donor is found. Yet every day across the UK someone dies in need of an organ transplant.
Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHSBT, says:
“For many thousands of people across the country, including 44 people in Devon who have had transplants this year, the only reason that they have been able to enjoy a happy and healthy Christmas is thanks to the generosity of a donor and their family who so selflessly chose to give the gift of life. However, there are still thousands of people who are still desperately hoping and waiting for the transplant that will transform their life.
“Please take a moment this New year to let your family know your organ donation decision. Those conversations could help save the lives of people who will be bringing in the new year waiting for a transplant.”
Lisa Woodcock from Exmouth started to experience itching in 2018 and tried all sorts to alleviate it over the next 18 months. Eventually, prompted by her mum who has a liver condition and knew it could be a symptom of liver problems, she visited her GP. Tests lead to a diagnosis, in March 2020, of Primary Biliary Cholangitis, an autoimmune liver disease. Lisa wasn’t worried as this was the same as her mum, who has lived a normal life with the condition for 25 years thanks to medication. Sadly Lisa has a very aggressive variant, Ductopenia, which destroys the small bile ducts and she didn’t respond to any treatment which lead to a quick decline.
Lisa was itching all over until her skin bled, was losing a lot of weight and had very disturbed sleep – with insomnia at night leaving her fatigued all day. After being assessed she was listed for a liver transplant in June this year.
Three days after her sister’s wedding in October Lisa received her lifesaving call, it was a good match and the transplant went ahead successfully. Two weeks later Lisa was discharged home where she continues to make a speedy recovery and is very much looking forward to 2022. Since her transplant Lisa has been told by her family that they didn’t think she would make it to see in the new year.
Lisa says: “I started itching lots but I was travelling a lot with work and put it down to that, I tried all sorts of remedies but nothing helped. It got so bad I was starting to lose sleep and my skin was bleeding, I lost a lot of confidence. When I was diagnosed I thought I’d be fine, I even had a laugh with my mum saying that we were PBC twins, I saw how well managed her condition was, so I wasn’t worried.
“But the medication unfortunately didn’t work for me, that’s when they started talking about a possible transplant. It was a shock and I thought it would be years down the line but my results just got worse and worse. I was deteriorating quickly and was listed for a transplant. Being on the waiting list was difficult, it was hard to get my head around and I felt like my life and my families lives were on hold. You feel you are waiting for someone to die, and although I understand this is sadly a fact of life, that doesn’t make it any easier. Hopefully donor families can take some comfort from helping other people to live.
“Helping my sister plan her wedding got me through my time on the list, it kept me distracted and over that time I didn’t realise how ill I was. I was skeletal by this point, my eyes were yellow, my skin raw and I was surviving on about two hours sleep a night. Then suddenly I got the call, I was convinced it would be a false call and that transplant wouldn’t go ahead, I had been warned this is very normal. I couldn’t believe it when the surgeon walked in with the paperwork ready to go.
“After surgery I was told by my consultant that the transplant came at just the right time, my liver was not very well at all. On the list pre-transplant I was prepared for a long wait, I’d done my research and I have friends who have been waiting for their life saving gift for years. I’ve been very lucky. When I got my call my first thoughts were for my donor, their family and my fellow liver buddies still waiting, I felt guilty. Thanks to my amazing care team, my transplant went very well and so far I have had a textbook recovery.
“I feel amazing, I am so grateful and so happy. I feel well. I also feel guilty for those still waiting for their gift of life. I feel guilty that my donor is no longer here, I feel guilty for my donor’s family, what a horrible time they must be going through. I am still processing everything but every day I am stronger.
“I think my donor is phenomenal, it is amazing that they and their family supported organ donation. Something tragic happened and they have saved other people, strangers. I can’t imagine being in their shoes, it is so selfless of them, it is the greatest gift and they are my heroes. My husband Justin and I are forever grateful, we think of them and thank them every day.
“When it comes to organ donation, people need to think ‘what If I became poorly and needed help’, would they accept an organ for themselves or someone they love, and if the answer is yes, they should think about giving too.
“I was just ploughing on, you get used to ‘being ill’, used to the symptoms, being in and out of hospital, waiting, but it must have been so tough for my family. I genuinely feel they have been through a tougher time than I have.
“I love Christmas, always have, my husband Justin was never as keen but we’ve had the best Christmas ever this year, we’ve really got into the spirit of it.
“At the same time I know another family has had someone missing, a candle was lit for them and they have been in the forefront of my mind leading up to and over Christmas, and will be for all my days to come. Thanks to them from the bottom of my heart.
“In 2022 I am looking forward to getting back to work and spending time with my family and friends, and it is all thanks to my amazing donor, I now live for them.”
Even though the law around organ donation has now moved to an opt out system across England, Wales, and Scotland, many are still not aware that families will still always be consulted before organ donation goes ahead.
While families are more likely, and find it easier, to support donation when they already know it is what their loved one wanted, only 42% of the UK population have registered their decision on the NHS Organ Donor Register and just 37% say that they have shared their organ donation decision with their family.
Anthony Clarkson adds, “We know that for many thousands of people across the UK, including 92 people in Devon, the greatest gift they could receive this new year will be a phone call telling them that a donor has been found for them. Please let your family know your organ donation decision and leave them certain of your decision”.
For more information, or to register your organ donation decision, please visit: www.organdonation.nhs.uk or call 0300 123 23 23. NHS app users can also use the service to record, check or update their organ donation decision.
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