Organ Donation Week 2019: What Is It, My Story and How You Can Help.

From the 2nd September until 8th September is Organ Donation Week, this week is once a year and a way for the NHS and organ donation/transplant charities to raise awareness about the importance of organ donation and transplants. With the new Organ Donation Law in the UK only coming into action in 2020 this is a really important week to push for people to register as an organ donor and also for people to have these conversations with their families because even if you’ve registered as an organ donor your family can still refuse your organs to be donated. Now I’m very aware this can be a controversial and ethical issue but either way it is still really important, I talked more about the ethical side of organ donation in my “The Taboo Subject of Organ Donation” post. Organ Donation Week is organised by the NHS and this year they are running campaigns to encourage people to share their organ donation decision with families as that is the most effective way to ensure that your organs do get donated. The NHS Organ Donation Website states that “together with hospitals, charities and supporters of organ donation we’re highlighting that words save lives and the more people talk about organ donation with their families the better”. You see about 2,500 organs were missed in the last year because families said no to donating their relatives organs, that is potentially 2,500 people who’s lives could’ve been saved or improved, how mad is that. TWO THOUSAND FIVE HUNDRED. That statistic breaks my heart because in this last year my Dad, who I will talk more about soon, could’ve had a new and improved life and be well into recovery instead of living in hospital full time. One person who is in desperate need of a transplant of any sort dies every three days (on average) due to the lack of organs being donated, that is at least 121 people every year. This is why Organ Donation Week is so so important, we need to have these discussions so that even if our life is over someone else’s can be started up again. I personally believe that our deaths are inevitable regardless of the circumstance but being able to make light into up to 8 other peoples and families lives makes it so much less in vain.

To really help people understand the importance of organ donation I want to tell you my story, I want people to imagine being in my place and to see how far out the ripples of effect go. So lets take it back to May 2018, my dad had had his third heart surgery in three years and he was deteriorating rapidly. He struggled with walking and staying awake longer than a few hours, we really thought we were going to lose him. He ended up in hospital for a weeks, had his medication changed round and was referred to the INCREDIBLE Freeman Hospital in Newcastle. This was where he was told that he was at the final resort and that all they can do for him is give him a new heart completely via transplantation. That would’ve been perfect if there was a simple way of getting a new heart, we would just have to wait until a match would come along for him.

Months went by of waiting and regular trips to the Freeman for thorough tests which my Dad referred to as his MOT and still no heart. We had one phone call about 6 months in but it ended up not being a match for him, the first stage of heartbreak for us all. The expectation and potential which fell really fucking flat. We fought through it though because the match will come any day now. We carried on life as normal as possible and we made sure we saw each other once or twice a week. He taught me to drive, we would go driving for hours and hours anywhere we could.

Until a week ago when only being out of the house for an hour was exhausting and we new he wasn’t doing too well. On his most recent MOT the doctors gave us some life changing news, that Dad would have to go into the Freeman indefinitely. The second stage of heart break and the last stages of heart failure. His other organs weren’t coping well with the slack coming from the heart. Three weeks ago Dad went into the Freeman and is now top of the urgent transplant list, which is a silver lining for sure. When he went into hospital he was second on the list and the guy (we’ll call him B) at the top was opposite him on the ward, last week B had his transplant. When Dad spoke to B, as they’re both on the same ICU Ward, B told him that despite the fact he had just had major traumatic open heart surgery he felt 1000 times better than he did before. How incredible is that? Imagine having a huge surgery and two days into the recovery feeling 1000 times better than before. Now imagine how I felt reading the fact that 2,500 organs were missed, AT LEAST ONE of them would’ve been a match for my Dad. ALL of them would’ve been a match for someone on the transplant list. Can you imagine knowing that one person who needs a transplant dies every three days and still be waiting for that phone call; the well awaited phone call or the dreaded one. Can you imagine being terrified every time the phone rang whether that be at home or work? Can you imagine not wanting to turn your phone off or not wanting to go anywhere where there is no signal in case you miss the call? Imagine praying for the same thing every night with such passion and intensity. Imagine worrying that you missed a goodnight text which could be your last ever one. That is my life right now. So please I am begging off you help support me and so many other families in this country by registering as a donor and having one conversation with your family about wanting to be an organ donor so they don’t have to make that decision for you. So for this organ donation week that is where our story is at, as I’m writing this I’m on the train back home after spending two days and a night at the hospital visiting Dad. We are still waiting and so are so so many families. Everyday there is heart break and fear of the unknown. In the block flats the hospital offers for family to stay in there are so many people in the same position, they are waiting for what is going to be the most life changing phone call for them and their loved ones. There is hope, there is grief, there is anger, and there is camaraderie.

How can you help I hear you eagerly asking your screen? I will leave them in a few little bullet points for you.

• Register to become an organ donor at https://www.organdonation.nhs.uk/register-your-decision/

• Inform your family of your decision and make sure they are clear about your decision, and then live your life as normal (yes it’s really that simple)

• Share posts like mine and the ones coming from the NHS Organ Donation site and social media’s

• Open healthy discussions about your wishes and Organ Donation in general with people in all areas of your life during Organ Donation Week

• Support donation/transplant charities such as Live Life Give Life (I talk about them more in my “Why Someone You Loved Is So Special” post)

Thank you so much for reading today my amazing friends, if you liked this post please do like, comment and follow. If you do want to support me and this cause please make sure you share it and follow one or two of the ways you can help get involved. Discuss Organ Donation Week so that it becomes less and less of a taboo.

Alex xxx

5 Comments

  1. First, this is an incredibly informative and well-written post on a complicated matter. Second, sharing your story and how organ donations can directly impact your family takes a lot of courage.

    As always, I’m praying for you and your family. Hopefully your dad will have a heart transplant match soon. 💙

    Liked by 2 people

    1. Thank you so much my lovely friend, you are so kind and sweet and I appreciate you no end. I knew that I needed to share this to not only help my family but help others everywhere. I cannot wait to write the words “my dad got his new heart”. Thank you for supporting me🧡

      Like

    1. Thanks so much love, it really is and I’m glad people are responding so well to this. I can understand it can be quite morally controversial🧡 xx

      Liked by 1 person

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