Wednesday 26 June 2019

A sister's life-saving gift

Margaret and Bernie Quinn talk to John Manning eight months after one sister made a life-saving gesture for the other and donated her kidney

Tom, Margaret and Bernie Quinn.
Tom, Margaret and Bernie Quinn.
Claire Byrne, Ambassador, Organ Donor Awareness 2018, pictured at the launch of the Irish Kidney Association Organ Donor Awareness Week.

The Quinn sisters have more than your average sibling bond thanks to the courageous gesture of Bernie Quinn who donated a kidney to her sister, Margaret and saving her years on dialysis and ultimately, saving her life.

Margaret was first diagnosed with a kidney condition in her early 20s but the condition can be traced back to a childhood illness she had when she was six. Year after year, her kidney function declined until she reached just 10% function a couple of years ago and a life on dialysis was looming and a long wait to receive a kidney from a deceased donor.

Organ donation from a living donor was something Margaret had never really considered, and certainly not from a family member but her strong-willed sister, Bernie had other ideas.

Quietly, Bernie was wrestling with the idea of donating her kidney to her sister and began to research how it would work.

Bernie told the Fingal Independent: 'When I first heard the notion of a living donor, I was horrified at the thought of it and thought no way would I do that.

'But time went on and I heard about other people's experiences, and everyone spoke so positively about it. I spoke to other donors and heard some of the speak in previous Organ Donor Weeks and that motivated me to do it. So when Maggie was put on a transplant waiting list, I made the initial phone call and then just took each step as it came and thought if it was meant to be, it would happen. Kind of instinctively, at that stage, it felt like the right thing to do.'

It was only after making those initial contacts with the hospital, that Bernie offered her kidney to Margaret.

She said: 'I first rang up in August (2016) after she was put on the transplant list in June. I rang the transplant co-ordinators in Beaumont and they started the process and I think I said it to Maggie after that.

'They asked me a few questions first to see if I might be suitable and then they asked me to go in for blood tests and stuff. So, I think that was when I told Maggie about it.'

Margaret was initially reluctant to involve her sister in the process. She told the Fingal Independent: 'My kidney function was going down quite low and the consultant told me I had about 18 months before I would have to go on dialysis.

'So he suggested a pre-emptive transplant and asked if I had anyone in the family that might be suitable. Initially, I said I didn't have anyone - I suppose I didn't want to ask anyone. I just didn't want to even think about it.

'Six months passed and I went to see him again and he suggested I'd have to start dialysis soon. My condition was getting worse and I was getting sicker and then Bernie said to me, she would donate a kidney to me, if I wanted.

'So I went back to the hospital and produces this sister and said, well, actually I do have a sister who is willing to donate.'

Margaret remained unsure about the idea initially and tried to put her sister off the idea. She recalled: 'I suppose, I put her off initially because she just had a baby - I wasn't that keen on the idea.'

But after Bernie explained she felt good about the decision and felt she was in the right place to do it, Margaret agreed to go ahead with it and the process was set in train.

There followed months of tests, primarily on the donating sister, Bernie who was constantly advised that at any time, she could drop out of the process and change her mind but Bernie's mind was not for changing.

She said: 'I probably had made my mind up so I didn't really talk to many people I would have spoken to some friends and family alright, but more saying to them that I was thinking of doing it. My main concern was that it wouldn't work for her - that was the biggest thing.

'I can't remember the exact percentages but it has a very high success rate. I felt sure they wouldn't do it otherwise - if they thought it wouldn't work, they wouldn't do it. Of course, sometimes it doesn't work so that's the first quest I asked when I woke up after the surgery - I was saying: 'Did it work? Did it work?'

The answer was a resounding yes and while talking separately to the two sisters about the moment it became clear that the operation had been a success, it seems they were both focused on the other's well-being.

Bernie said: 'I was out of the operation first and I was back a good few hours before her so I didn't see her until the next day, when she was up and about. She came into me the next day, I wasn't able to get out of bed for a couple of days. It was a relief. I was in some pain myself but just ordinary post-surgery pain and suddenly that didn't matter then, I knew that was going to ease off in a matter of days or weeks so once it worked out for her, that was great - I was so relieved.'

Margaret talked about feeling that same relief but for different reasons. She said: 'It happened pretty quick in the end. We were brought in and given our own rooms. Bernie was wheeled down to the operating theatre about three hours before me and I think that wait was the worst - it seemed like a whole day.

'The night before, I was kind of pacing and walking around and there was a guy in the opposite room about my own age and he looked very grey. Everyone talks to each other in the hospital and I looked in the door and asked him how he was getting on.

'He said he had the transplant six weeks before but it didn't really kick in. That worried me but he said it would kick in - there is a thing called 'lazy kidney' where it takes a while longer to kick in. I asked him, did he know immediately when he woke up and he said yes. 'He explained that if you wake up with three tubes coming out of your neck, the kidney isn't working yet. The first thing I did when I woke up is check my neck and there was only one tube so I knew it must have worked. But to be honest, the minute I opened my eyes I knew it had worked - I felt great.

'I was happy and happy for Bernie that it hadn't been rejected, I asked my husband how Bernie was and he told me she was great and she was awake and talking. I think she rang me on the phone actually and we had a conversation before the morphine kicked in. We were delighted.'

Both sisters then began the recovery phase for Bernie in particular, that recovery has gone pretty smoothly. She said: 'Every week I improved but nervous to see if the kidney would be rejected, because that can happen in the first couple of months but otherwise I was fine and now I feel fantastic.

'I've forgotten about it really, at this stage. The recovery was very quick and I don't think of it now on a daily basis and I'm doing everything I was doing beforehand.'

For Margaret, there has been a couple of setbacks along the way with a thankfully temporary rejection and an episode of sepsis but she said that ups and downs are normal in the first year. Currently, she feels great and is looking forward to a long and healthy life, thanks to her sister.

Both sisters praised the living donor system here and the doctors, nurses and transplant co-ordinators of Beaumont Hospital and the Irish Kidney Association who helped them through it all.

Bernie says she has 'no regrets' about her decision and addressing her comments to other potential living donors, she said: 'If it feels like the right thing to do, then go for it. I would recommend it. It might not be for everyone but I think if it is something you feel you might be interested in then talk to the transplant co-ordinators in Beaumont. They talked me through everything and they are brilliant. They are there at the end of the phone and no matter how daft your questions are, they will answer them.'

On organ donation from deceased donors, Margaret appealed to families making that difficult decision, not to let their loved one's organs 'go to heaven'. 'There are so many people out there waiting for a new heart, kidney or lung, standing by the phone and waiting for that call, you can really make a difference,' she said.

On the courage of her sister, she simply said: 'She's the real hero of this story.'

Fingal Independent