Living organ donors Emma and Stacey share the importance of being a donor.
Last year 202 organ transplants took place in Ireland, 29 of which were from living organ donors. Currently there are more than 650 people on the organ transplant list in this country, with over 500 of these people waiting for a kidney.
Choosing to become a donor is not an easy decision for many, however, for Irish women Emma Blair and Stacey O’Connor signing up to donate their kidneys to their family members was a simple choice.
Sharing their stories, we catch up with the women on why they did what they did.
How did you both decide to become kidney donors?
Emma: 2021 was a year of terrible losses for my family. My cousin Victoria, who was in need of a kidney transplant, has her mother pass away at the beginning of the year, and then a few months later, my mother passed away and then in September, my father passed away. Hoping to start the following year better, in 2022, Victoria got the call that we’d always been waiting for, there was potentially a donor for her. So off she went up to the hospital and we were also excited for her but it wasn’t meant to be.
She came home and never got the kidney, somebody else got it. Then I had my little light bulb moment and I thought, right, I’m going to go and get tested behind her back because she didn’t want anybody in the family to get tested. We had lost so much that year and I thought there’s maybe something I can do here for my cousin. That’s why I decided to do it just because I thought I would try and help and leave the terrible year that we’ve had before.
Stacey: For me it really wasn’t a question as soon as we got the news that my Mum’s kidneys had gone into failure. Naively, even though we were aware of kidney disease, we were thinking it was just going to be a quick fix and you can have mine, and then we’ll be sorted. It wasn’t quite as direct for us because myself and my brother weren’t a direct match. My Mum was like, absolutely no way. It doesn’t matter what age you are. You always my baby and what if you need it? What if your future children need it? She wasn’t having any of it. I thought I’m going ahead, and both myself and my brother got tested, and it came back that neither of us were a match. I’ve got various friends that have got parents going through things and you can’t do anything to help. You feel so helpless. So it doesn’t even come into question, if I can do something to help, because I know my mum would have been there in a heartbeat if it was the other way around.
What was the process of becoming a living kidney donor like?
Emma: I spent a full day in Belfast City Hospital in nuclear science in the basement. They came to me and they said that I wasn’t a match for my cousin Victoria and I was immediately devastated. I remember feeling so emotional. But as it turned out, Belfast is world leading in kidney research and kidney transplants. My kidney was as good as a twins, but we were different blood groups so Victoria was sent into hospital a few days before me, and kind of like dialysis, they clean the blood and they remove all the antibodies. In this very controlled and sterile environment, we did a direct kidney donation as Victoria’s treatment meant that she had no antibodies in her system to reject it.
Stacey: Initially it’s a blood and a urine test, so they’re looking for blood and tissue compatibility, because that’s the first thing to tick off the list. Once I got past that, they introduced the paired exchange scheme to us and said, if you’ve got a willing living donor and other people are in that situation, but they’re not direct matches, you go into a pool, and it’s checked every quarter, and if you match with another family then you swap. It doesn’t have to be 2 families, it could be 3 families, it could be 4 families, throughout the UK. So that is the route we chose. We then got a psychological evaluation from the human tissue authority to confirm that we weren’t being bribed or coerced into doing it and it was of our own free will and then I spoke to a counsellor as well to make sure that you were you were happy to go ahead.
You both want to raise awareness for employers surrounding support needed for living donors, what would this support look like to both of you?
Stacey: For me, it’s being given paid time off work to do it because although it’s elective surgery, it’s a life changing surgery and it’s to help somebody. So I suppose, it’s having paid time off to actually have the operation, to have the recovery, having that support there. Having that support because, you’re worrying about the logistics of everything, how it’s organized, you’re obviously thinking about the operation itself and whether it’s going to be a success, to not have work as a worry and to know, okay, my job’s going to be okay and I can go back to it and to be given that that time off.
Emma: When I approached my manager and director about it, I actually felt a little bit guilty because they were so supportive when Mum and Dad were sick. I went back to them a year later and said, “would this work and is this something that I could do?”, they were so supportive. Thankfully, my surgery was absolutely textbook. I took a full week of bed rest afterwards and by the end of week 2, I was fit to sit at the desk and do a bit of work, I was just very tired and had a take breaks and slept a lot more. Victoria probably will need another kidney someday because she’s young. And our friends and family will all be putting their hands up. She’ll be okay and she now sees how well I went through it as well. My son, turned 17 recently, so he got his provisional driving license, and when it came to the section about being a donor, he ticked it. It’s in their heads now and even their friends, which is lovely, they all know about it and they know it’s a thing and they see how well Victoria has come through it and that’s really encouraging.
What do you think is the most important thing people need to know about living kidney donation?
Emma: It’s not as scary as you think it is, and you can live an absolutely normal life. I have no side effects, I’m doing everything I did before, it’s like it never happened there’s just a couple of scars.
Stacey: It’s keyhole surgery and I don’t know whether people are aware of that. I also don’t think people realize as well, your remaining kidney bulks up, so it grows bigger to make up for the for the other, it increases its capacity. So, it doesn’t go, ‘okay, I’m down to 50% kidney function and then that’s it’, your remaining, one gets bigger and stronger.
What was it like to be involved in the Kidney exchange programme?
Stacey: It was incredible. I remember us getting the call because we were on the list for a few years because my mum had certain antibodies from when she was pregnant, either with myself or my brother. She’d have to have a blood transfusion back in the 80s. But what they did after being on there for a few years, they tweaked mom’s antibodies, so it meant the pool became a bit wider for her. When we got the call, it was September 2017. We don’t know who they are, it was all done anonymously. All I know is that my kidney went to a guy in his 30s and his dad donated his kidney to my mum.
Do you have any advice for people who are just beginning this journey?
Emma: I got a lot of support from Facebook support groups, people who have gone through it as well and asking them questions. Knowledge is power and just ask a little bit about anything you’re worried about, reach out. Someone’s been there and gone through what you’re going through.
Stacey: I’m a big advocate for talking about it because I got so much comfort in reading other people’s stories before we got the call, before we found out we were matched. Whenever I saw anything to do with somebody having a transplant that was a successful transplant, it just warms your heart because it’s amazing. It’s happened for them so it gives you hope that you could get that call too. That’s why I talk about it because I think, well, if that gives one family hope that, they’ll get that call and they’ll be in a position to donate, then great.
I’m so proud of my little scars from it. My parents turned 70 recently and we’re just back from a cruise, my mum was 61 having the operation and she never would have been able to go on a holiday like that because she had to have dialysis 4 times a week. She gets to go on holiday with their grandchildren and see them enjoy their time.
Emma: Victoria always wanted to go skiing, but never felt fit or well enough to do it. For our 1st kidney anniversary we went skiing. She was she was completely punctured, totally wrecked, but loved it. We went back for the 2nd year and the difference even in that year, with her fitness and wellbeing. It was actually really emotional, that she is doing so well.
