Organ Donation Week – we talk to a recipient

Ricky Moate received a small bowel and abdominal wall transplant at the Churchill Hospital in 2018. We caught up with him to find out what this has meant for him, and what he has to say about the importance of organ donation.

Born in Hull and now living in Sheffield, he talks to us about his experience.

You were born with gastroschiosis - what did this mean for you as a young child?

I was born in my intestines outside my body - it was a rare condition back in the eighties, but it's more common these days.

Unfortunately, I was left with my intestines outside my body for 48 hours after being born and wasn't expected to survive. There were all kinds of complications, including gangrene. I was in theatre nearly every week and didn't leave hospital for nearly 18 months. I had recurring infections, septicaemia, meningitis - every complication you could think of.

As a young child, my life was very different to those around me. That said, it was all I'd ever known so it was quite normal. I didn't see myself as different - just unique, an individual.

What was it like growing up with a condition like gastroschiosis?

There were constant hospital visits, and also I was bullied quite a bit as a child. My Dad tried to bring me up as normally as possible, and I grew up quite naturally positive, strong-willed and determined. I really think that helped in my transplant journey, too.  

I grew up with short bowel syndrome, too, which meant I didn't have enough functioning intestine to stay alive. I couldn't absorb nutrients properly so needed intravenous support.

What led up to you being on the waiting list for a transplant?

I was around seven years old when a transplant first got mentioned to me when I was under the care of Sheffield Children's Hospital, but back then it was considered too risky and unlikely to happen as the clinicians thought I'd need at least six organs. From that point on, I didn't think a transplant would be possible.

As time went on, my veins became scarred and at risk of collapse because of the intravenous feeding, and didn't repair themselves particularly well. That meant that I was running out of veins to use for my intravenous feeding, which meant there was a risk of starvation. Other complications like iron deficiency anaemia cropped up, too - this is quite common with short bowel syndrome, because the part of the bowel that absorbs iron is missing.

I saw a gastrological consultant in 2017, and I had no more vein access points. I was one infection away from being in serious trouble. I got asked how I'd feel about an analysis for a bowel transplant - of course, I agreed. After my assessment, I was put on the transplant waiting list in January 2018. 

How did it feel while waiting for a transplant, and then getting the call?

Basically, your life goes on hold - you can make plans, but you can't commit. Your phone becomes an extension of your arm. I tried not to think about the wait because the more you think about it, the more it seems to drag. Some people may wake up and think "I wonder if I'll get a call today?" I had more of a 'if it happens, it happens' approach - I'm very realistic about things. Even things like understanding the risks - you know what you're going into, but you know it's for the best.

We got the call at just gone three in the morning. My wife Lisa panicked - it suddenly became real for her. I was calmer, but this was what I had been waiting for and I just wanted to crack on. I had to drive from Sheffield to Oxford, too, so needed to be in the right frame of mind.

I knew I was going through this to give myself a better chance of survival - I knew what the outcome would be if I didn't have the transplant, so there was no question that I'd go through with it. I did have some natural nerves and apprehension, but I've always been a believer in not having if, buts, or maybes. I knew what I had to do.

You were up on your feet again in a remarkably short time  how long was it exactly? What do you think helped with this?

I had my operation on the Monday night, and was in intensive care on the Tuesday. I was in and out of theatre over the next couple of days for various operations, and was woken up on the intensive care ward on Thursday. By Saturday afternoon, I was back on the Wytham Ward in the Churchill Hospital, and in and out of my chair by Sunday morning. Sunday afternoon I managed a walk up and down the ward. To be honest, my body is used to trauma after years of operations, and recovers quickly.

Everyone was worried that I was rushing my recovery and kept telling me to go at my own pace, but this was my own pace - I always bounce back. I was discharged after 18 days, which everyone was astounded by. I was readmitted for further operations and now attend weekly follow-up appointments. A lot of people might think that you receive a transplant and that's it, you're all done - but it's not the case. It's major surgery and needs a lot of work.

What's next for you?

I've currently got a vac sponge pump on my abdominal wall, which I'm hoping to get fully closed in the next couple of weeks - I'm having a skin graft from my leg to close it. I'm still on intravenous feeding, but reducing it gradually. I've been able to eat and everything seems to be working well. Part of the journey is regular monitoring with things like bloods, but I expected that. There are lots of unknowns with this kind of procedure, but I'm tackling them head-on. 

What would you say to anyone who hasn't signed up to the Organ Donor Register yet?

There's nothing but good to come of it. I'd tell anyone who was hesitant that they should understand one day they may need an organ - that's far more likely than being in a position to donate. One person signing up to the Organ Donation Register could change up to nine people's lives. Nobody knows what's around the corner - if you'd be willing to accept an organ, why would you be reluctant to donate one?

If you are registered as a donor, it's so important to let your family and loved ones know what your wishes are - that makes their lives much easier at a difficult time should they have to make a decision on your behalf.

People need to feel able to sit down and talk about these things - no-one likes to talk about death, but it's so important. Speak to your families, have that conversation. Talking about organ donation is just as important as signing up.

What would you say to your donor's family if you could talk to them?

Thank you is never enough. How do you say thank you to someone for saving your life? All I can hope is that they know that their decision and generosity saved my life - post-surgery, we found out that prior to the transplant I only had a matter of weeks to live. I owe them my life.

You can register to be a donor online by visiting www.organdonation.nhs.uk

Pictured: Ricky with wife Lisa and dog Olly