Liz Phillips, whose daughter Jade has PSC, has been chosen to promote organ donation at The Walton Centre in Liverpool. Her story is a special one, having bravely consented to organ donation for her late husband, Rick.
Rick collapsed on a football pitch in August 2000 he was 38 years old. He spent three days on a machine. The doctor had said they were going to do tests as they believed he was brain dead. He'd had an aneurysm on his communicating artery. We had a conversation about organ donation previously, so I mentioned this to one of the nurses who was looking after him. and a lady called Emma came to see me and explain what would happen.
So Rick became an Organ Donor.
My daughter Jade became unwell suddenly five years after Rick died: jaundice, vomiting and a swollen belly. Within 48 hours she was in Leeds St James, Children's Liver Unit and she was diagnosed with Autoimmune hepatitis (AIH), PSC and ulcerative colitis. She was vey poorly for about a year, had a stent, bile duct repair and her bowel removed. It got hairy sometimes and she's been close to liver transplant three times.
I used to think, "Why don't they just give her a transplant and make her better like the other children?" but I now know she's complicated and transplant is a treatment not a cure. Her docs are brilliant and Rick's nurses are now personal friends.
I often think what if I had not been brave enough to have carried his wishes out? I think I would have felt so guilty as I know Jade may well need a transplant to save her life in the future. But I did carry out his wishes; we did as a family, and we wouldn't have had the experiences and friendships we as a family have today if we hadn't. If Jade ever does have to go down the transplant road, I will know how the other family will feel.
I love promoting Organ Donation! It truly is a positive to come out of despair. It's a long journey but I feel Rick has done good and I'm so proud of him and our children.
Thank you very much to Liz Phillips for granting us permission to share her news.
- If you are not already registered as an organ donor, do it today! You can call up to do it on 0300 123 23 23 or sign up online at organdonation.nhs.uk
- Importantly, talk to your family about your wishes so that they know that's what you want.