Organ & Tissue Donation week 2024 – The Dewar Family
Twins Daniel and Nathan Dewar both received kidney transplants – Nathan from his father Blair and Daniel from an unrelated organ donor.
Blair, Nathan and Daniel’s names form part of a vibrant new sculpture that is both a memorial and a celebration of organ and tissue donation and transplant. It brings together a community of 366 people (a name for each day of the year, including leap years). Signatures were submitted by transplant recipients, organ donors and their relatives, potential donors and members of NHS staff involved in organ and tissue donation.
Incredibly, the Dewar family’s story begins with a bout of gout.
Daniel Dewar was just 19 when he found a lump on his finger. After a few days, he decided to have it checked by his GP and that was the moment a medical rollercoaster began for him and his family, who live in Larbert.
Unbeknownst to Daniel, now 27, he had a debilitating kidney condition which meant his kidney function was poor and would continue to deteriorate unless he had a transplant.
Despite also having no symptoms, Daniel’s twin brother Nathan decided to have himself checked out and it transpired that, not only did he had the same condition, but his kidney function was even lower. Then it became apparent that Nathan’s function was degrading much faster than Daniel’s.
The twins’ dad Blair explains: “It was at this point when my wife Ruth and I started to talk through all the different options, with one of them obviously being the boys’ mum and I being living donors for them.
“After some tests, we found out that technically I was a better match than the boys’ mum as I was same blood type but we found out Ruth’s own kidney function wasn’t great. She could have donated but it would have required a much higher level of anti rejection drugs.
“So we had loads of further tests done, CT scans, psychological tests and in March 2019, I donated my right kidney to Nathan. The procedure couldn’t have gone better and the transformation in Nathan was incredible. The kidney started working straight away and he was discharged a week later with the all-clear.
“The fantastic thing was that the boys’ slow deterioration meant we had time to plan it and when the time came, the transplant went really smoothly. The boys had always been a bit lethargic but we just thought it was a teenage thing. Now we can see that it was this kidney issue that meant they had low energy so when Nathan got his new kidney, his function shot up from around 5% to over 90% and he was like a new person, the improvement was almost immediate.”
For the next 14 months, Daniel remained on medication to slow the decline of his kidney function, successfully managing his symptoms but it became apparent that his condition was worsening.
While on the organ donation waiting list, discussions began about starting dialysis at home. Due to the Covid-19 pandemic, Daniel was taken off the transplant list but following a scheduled appointment and Daniel’s function being identified as now much lower, he was put back on the list. Then to the family’s amazement, the same day he rejoined the waiting list, a donor kidney became available that afternoon.
Mum Ruth explained: “I got a phone call from Daniel and with the excitement, it was totally garbled so we didn’t know what he was telling us. When we finally realised what was happening, it was amazing. We raced home and headed straight for the Queen Elizabeth University Hospital in Glasgow where the operation was carried out in May 2020.
“It was very different for Daniel this time though – with Nathan, there was almost an element of relaxation about it all but with Daniel and Covid, we basically had to drive him to the door, drop him off and say bye!”
Daniel added: “To be on the list in the morning, and then a kidney available in the afternoon, it was just so surreal. Once I had the operation, there were a few complications, my kidney wouldn’t work properly but after a round of dialysis, it seemed to kickstart the kidney into life. Then I developed a small blood clot that meant part of the kidney failed. Luckily the remaining kidney function was good enough for me to recover fully.”
Dad Blair says: “The two boys both had very different experiences of getting an organ donation, Daniel’s was a lot bumpier. Nathan was up and walking around on day one and was discharged after only one week. Daniel was in hospital for nearly three weeks but once they’d got his medication levels right he was able to come home.”
Both Nathan and Daniel had to continue to travel to Glasgow for check-ups but eventually they were transferred to the Renal Unit at Forth Valley Royal Hospital, attending every four months to check their kidney function levels. They remain immuno-compromised so have to be careful during cold and flu season.
The difference to their lives following the transplants has been extraordinary.
Nathan explains: “Before the transplant, we were very lethargic and generally lacked energy. Since then, we go on day trips and holiday lots, we were in Berlin a few months ago and we’re off to Salou in Spain in a couple of weeks’ time. We’re both working full time now and we’ll be sitting our driving tests soon.
“The only thing now is when we catch something because of our lower immunity, it takes our body a lot longer to fight it off, compared to a normal healthy person.”
And what would dad Blair say about being a living donor?
“I was on the list as a donor and I always gave blood and still do it now. I lead a completely normal life, so as a living donor, I have very few negative elements to this and I’ve gained far more positives. I often think, if they hadn’t had the transplant, especially Daniel, their lives would have been so different from what it is just now, I don’t even like to think about it.
“I think it’s one of the best things that anybody could ever do, and the fact that because you have got two kidneys, and you can be that living donor, to me, it’s one of the best gifts you can actually give to somebody, that people can benefit from your organ donation.”