Ahead of the Irish Kidney Association’s Organ Donor Awareness Week, which takes place from today until April 7, Reah and Aaron Higgins from Caher, Co Clare, talk to Carol Byrne about their recent transplant journey.
When Reah Hedrich met Aaron Higgins for the first time 20 years ago and he asked for a kiss, she shied away from him.
Little did she know the two would reunite in 2006 and be the perfect match.
In fact, the couple were more of a match than they originally thought — when Aaron’s health took a dramatic turn, resulting in him going on dialysis, Reah didn’t think twice about offering him a kidney.
Twelve months on from a successful transplant procedure, the couple and their two children, Fionn and Stephen, are enjoying the new lease of life the procedure has given their family.
Aaron has a condition known as focal segmental glomerulosclerosis (FSGS). It causes scar tissue to develop in the kidneys which limits the filtration process and can lead to kidney failure.
Aaron started to display symptoms when he was in his late teens but he didn’t get diagnosed until much later. The couple, who are now in their 30s and live in Caher, Co Clare, saw Aaron’s health deteriorate over the past five years to a stage where his kidney function dropped to 5%. In 2015, he went on dialysis at University Hospital Limerick.
“I was sick for years, but the last five years were the worst. I had gout and couldn’t move my hands, which is all associated with it. I was on dialysis for two years,” he said.
Once on dialysis, Aaron was placed on the waiting list for a kidney transplant, but, even before that, Reah wanted to get tested and give him her kidney.
“I knew I needed a transplant years ago but because you are young, they make you withstand whatever you are going through for as long as you can sustain it.
"I was at 5% when I went on the dialysis. My kidneys weren’t cleaning the poison so that’s why I was getting the gout. I had to watch what I was eating. I couldn’t have a coffee, all that kind of stuff, and the minute you did you got sick straight away.
"I was very tired, I was yellow and had red eyes. I weighed 73 kilos, I’m 103 now, and I’d get very bad cramps,” said Aaron.
Reah said that, even before Aaron went on dialysis, she was used to receiving calls to say an ambulance was bringing him to hospital and she always had to have her phone with her.
Once Aaron was on the transplant list, Reah was anxious that she be tested to see if she was a match.
“We had a conversation one day and said let’s just keep everyone else out of it and it will be more personal, less stress, less people having to get involved, and it just worked out. Reah wrote a three-page letter to the doctors and then they went for it,” said Aaron.
Reah said she knew the chances of being a match were slim, but, if there was a chance, she wanted to be the person to donate.
“The one thing that makes me feel uncomfortable is when they talk of it as the gift of life. But to me, that makes it a bigger thing. When you see someone you love who is so ill, you don’t hesitate to put yourself forward.
"Death is such a small risk and with general anaesthetic there is always a risk. You don’t think about it, you just do it. He’s here, that’s all that matters,” she said.
There is a 25% chance of a sibling being an exact match and it is less if it is a spouse, so Reah and Aaron considered themselves very lucky.
“In October 2016, we went up for the start of the process. The first thing was that the bloods matched and then they do tissue testing. I wasn’t nervous, I was willing to just do it.
"It never even crossed my mind not to go for it. I never got nervous about it and I did wonder is that normal or am I living in a bubble,” said Reah.
Aaron said his family couldn’t believe the kindness and even he couldn’t comprehend it.
“She was OK about it but I didn’t want her to do it at all. They were surviving away when I got sick, but if she got sick, I didn’t know what we would do,” he said.
Reah said they received support from the transplant co-ordinators at Beaumont, who guided them through the process, including the potential for a negative outcome and this helped both form their decision to go ahead.
“Aaron struggled with it more than me but the co-ordinators prepare you for it. I was just so determined and calm. They do give you the option before they give you the anaesthetic that if you don’t want to do it, you can back out. So they take that pressure off you right up to the very end ensuring that you have that option to say no,” said Reah.
She said Aaron could have also stopped it up to that point. There were other considerations too, and, with two children, the decision was not an easy one.
“We felt that we should be open with the kids and let them know what was happening in a child-friendly way, so there was no secrets but they were upset.
“We brought them to the cinema the week before the surgery and the older boy in the car on the way home said, ‘When you are going up to the hospital, what if you die?’ You have to go through all that — ‘what if daddy dies and what if you both die’,” said Reah.
Reah’s surgery was set for 8am on January 30, 2017, and she was out by 3pm. Doctors told her that the moment her kidney was transplanted, it just swelled up and started pumping and that it was an extremely healthy kidney.
Aaron said there was an immediate difference when he came around after surgery.
“I walked past a mirror and I had to go back and look in and I thought, ‘Jesus Christ, is that me?’ I called people over to look at my face, my colouring was completely different, I was like a different person, my vision was better after a couple of days, and my hearing and sense of smell was really strong.
"My creatinine level was 950, so that was poisoned by 950%, and the next day the creatinine level was down at 200, and the next day it was down to 110,” he said.
Although the surgery was a success, there is always a risk of rejection, as the couple pointed out, and the risk was always there that Reah would lose a kidney and there would be no gain for Aaron.
After three days, Aaron developed symptoms of mild rejection and was put on medication to counteract that.
Reah said when they heard the word ‘rejection’, their hearts sank, but with medication they got over that initial hurdle, although it is always a possibility.
Reah explained that the transplant co-ordinators prepared them for the fact that it might reject. “The reality of it is that it might reject tomorrow, there is a chance, but fingers crossed it will be long lasting.”
She said the lifespan of a live donation is approximately 20 to 25 years, whereas it is roughly 10 to 15 years for one from a deceased donor.
For her, she said it was an adjustment and she has recovered well from the surgery, with her kidney expected to grow to compensate for the loss of one.
Rather than removing Aaron’s non-functioning kidneys, the consultants attached Reah’s donated kidney to an artery.
“They were going to remove both kidneys but then they said it is so invasive so they left them in there, and now my new kidney is attached to an artery in my leg instead,” said Aaron.
The couple said although the experience was harrowing and challenging, both before and after surgery, they received tremendous support from their community, their family, the Irish Kidney Association’s Renal Support Centre, the renal team, as well as the transplant co-ordinators.
Travelling from Clare to Dublin was an ordeal, and the couple said having the Irish Kidney Association’s Renal Support Centre made this so much easier on them as a family.
“It is like a self-catering hotel. Family were able to come up and stay, I was able to stay after surgery. It was amazing. It was expensive to go up and down and then a hotel on top of that, so having a place to stay took all that stress away. It just made such a difference,” said Reah.
She said she will never regret her decision as it has been “life-changing”.
“It is an individual decision and I think if you don’t want to do it then that is
totally OK and should be
respected No one should feel under pressure to do it.”
Aaron said life feels different for him now because there are almost too many possibilities for him.
“It is strange because now that I can do whatever I want, I’m not sure what I want to do,” he said.
Reah added: “Aaron was out with the kids playing on the trampoline yesterday and there is no way he would be doing that before, and these are things that you have to remind yourself of.”
Aaron said he has noticed that the boys are also interacting with him a lot more since the surgery.
He was so appreciative of the gift his wife gave him that, each month, he got her flowers with a message saying ‘thanks for the kidney’.
“I met Reah when I was 14. She was way taller than me and I asked her for a kiss and she said no way. And now we are married and I have her kidney,” said Aaron.
He added that since the surgery, he has put on four stone, something he is still getting used to, and he is started to get back to work and doing things he enjoys such as Taekwondo.
“Obviously, you need to mind yourself and not get kicked in the kidney,” he says, laughing.
More information on how to be an organ donor is available by phoning the Irish Kidney Association on 01 6205306, Free text the word DONOR to 50050 or visit website ka.ie/card.
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