Dr Helen Tyler – Relative of Organ Donor & Recipient
Helen’s cousin Caroline was in her first year at medical school when Helen was in her final year at the same university. Sadly Caroline stepped out on to the street and was hit by a lorry. She never regained consciousness and suffered brainstem death. Her heart was donated to a student the same age, and both her kidneys and liver were also donated for transplant.
Caroline had been training to be a doctor and always wanted to help someone. By donating her organs she achieved that and also gave her family some comfort following a really devastating event.
Dr Tyler’s father in law received two kidney transplants which helped extend his life. The first gave him ten years free from dialysis and allowed him to return to work and spend time with his family. When he received his second transplant he was very ill and his recovery process was different but every month it gave him precious extra time.
Darren Mossman – Dialysis Patient
At the end of 2012, over 230 people were receiving dialysis treatment in Forth Valley. Of these, around a third are currently waiting for a kidney via the Organ Donor Register.
One local man who feels strongly about the subject of organ donation is Darren Mossman from Falkirk.
The 39 year old HR manager was diagnosed with Polycystic Kidney Disease aged 20 but has seen his symptoms worsen over the past nine years. In October 2012, he had his left kidney removed, followed by his right kidney in March 2013. He has since been receiving haemodialysis at Forth Valley Royal Hospital and is currently on the transplant waiting list.
“For a long time I was OK – I had cysts on my kidneys but I didn’t have any ill effects until I hit about 30 – then I started to go downhill,” he explains. “Medication started to increase and then I regularly had cysts bursting. When that happens there’s a release of blood and normally an infection follows, so doctors decided to remove my kidney, which by that point weighed around 10 pounds.
“My right one hadn’t given me many problems until that point and I still had some limited function but things started to go wrong and I ended up very anaemic – I had to receive injections to boost my haemoglobin count to a level high enough for them to safely operate, otherwise I wouldn’t have got through it. In March the level was higher and I had my second kidney removed.”
Darren receives dialysis three times a week for five hour “twilight sessions” which run from 6pm to 11pm, as he still works full-time, which requires travel throughout the UK regularly. Prior to starting treatment he says he had no energy (“I just wanted to sleep”), passed blood frequently, experienced chronic pain and found it increasingly hard to concentrate, particularly when reading documents for work:
I did the Glasgow to Edinburgh 50 mile ‘Pedal for Scotland’ last year and once I get the central line out and get my fistula I can swim again, which I used to do competitively.
“As I was so ill before, dialysis has been amazing for me – I’ve not got that poison in my system any more. I’ve got much more energy – I did the Glasgow to Edinburgh 50 mile ‘Pedal for Scotland’ last year and once I get the central line out and get my fistula I can swim again, which I used to do competitively. But everyone’s different. Other people can hardly do anything. They can’t work and are tired all the time. I’m one of the youngest in the Dialysis Unit, but I see people who are half my age in there. Dialysis keeps you alive but it’s no comparison to a fully functioning kidney.”
The Scottish Government are currently promoting Organ Donation via new national campaign, which not only encourages people to join the Organ Donor Register, but also asks those already signed up to discuss their decision with their friends and family, so they are aware of their wishes. Darren believes this is an important part of the process.
He explained: “I think it is very challenging because people are so emotional when their loved one passes away, that’s not the time to have to make that decision. Those conversations should be well in advance of that. If you could take that out of it and have doctors and relatives already know that a person is registered it would be much better.
“A lot of people don’t sign up on the basis that they think they’re going to jinx themselves. They think ‘If I sign up to this something’s going to go wrong.’ It kind of doesn’t hit home until it’s someone in your family.
“What I was surprised about when I started treatment was the amount of people on dialysis, and that’s only one area where the organ donor register could help. There are thousands of people of all ages waiting for an organ transplant.
“It is sad that organ donation happens as a result of someone else passing away, it’s a horrible thing to happen, but to think you could improve a person’s quality of life many times over – it can make such a difference. To give someone quality of life is an amazing thing.”
Bernard McGucken – Lung Transplant Patient
Bernard McGuckin is a 61 year old grandfather from Denny and has suffered from Chronic Obstructive Pulmonary Disorder (COPD) since 1999.
Bernard and two of his three brothers had been heavy smokers all their lives. Six weeks after one of Bernard’s brothers died from emphysema in 1999 (after begging his brothers to give up smoking) Bernard too was diagnosed with COPD. However despite watching his brother die from the condition it wasn’t until he was hospitalised in 2005 with severe breathing difficulties and the hospital consultant telling him: “It’s the fags or your life” that he finally gave up.
In those early days, Bernard had lost the will to live but when he finally joined the local Pulmonary Rehabilitation group his zest for life returned. Sadly his condition has worsened but he is extremely optimistic and looking forward to once again playing with his grandchildren. He believes more people should sign up for the register:
At the moment I can’t do anything really,” he explains. “I’m okay when I’m sitting down but as soon as I do something – like walking from the living room to the kitchen – I need to sit down. The ‘opt-out’ option is a good idea. Everyone should do it. People don’t really think about it and don’t realise that it can make a big difference to life.”
Betty McFarlane – Lung Transplant Patient
Betty McFarlane from Falkirk is 57 years old, a mother of five and grandmother of three.
Betty had a lung transplant eight years ago, and just one year later she was back at work as a Domestic Assistant in the Renal Dialysis Unit at Forth Valley Royal Hospital. She says the transplant she received saved her just in time:
I only had a couple of months to live at one point. I basically just sat in the house for a few years so it was nice to go out and get company. Going back to work was the main positive thing for me – that and still being here! The ‘opt-out’ option should be standard practice – it would be easier and they would get a lot more donors that way.”
Pauline Glen – Kidney Transplant Patient
Pauline Glen from Maddiston is walking proof that organ donors save lives. On her 23rd birthday she received a call that would change her life forever – she was to receive the kidney she had been waiting over three years for. Here she shares her story…
“When I was young and at school I was a really sickly kid. I was sick at least once a week, and I had migraines and insomnia. I couldn’t sleep at night and in the mornings I was really tired – my mum thought I was at it!
“This went on for years and when I started working in myfirst proper job when I was 16 I still got migraines and had to take days off work. I’d been working for six months and I kept being sick, so my gran decided to take me back to the doctor’s.”
The GP initially gave her more migraine tablets, but he then asked her to come back so he could examine her eyes. “When I seen the look of concern on his face – I just knew something was wrong,” explains Pauline. “He got a second opinion from another doctor and eventually they found out I had one small kidney – it was about 4cm – and one large (around 14cm) which was doing all the work, but still only functioning at around 28 per cent.”
After being given new medication Pauline – then aged 19 – was put on to the transplant list and started dialysis, which continued for three and a half years until she received a phone call on her 23rd birthday:
“Joanne from the Renal Unit at Forth Valley Royal phoned me and said I needed to call the Western Infirmary in Glasgow. Then I just knew – why else would they ask me to phone the Western unless it was for a transplant? All I could think was,’ËœI can go on holiday! I can be normal, I don’t have to go into hospital three times a week!’ ”
The next morning Pauline had her last session of dialysis, and in the afternoon went in for her six-hour operation. She says: “It was scary – really scary – but I thought “If I don’t do this I’m not going to live forever, I need to.’ I was told the smaller kidney had basically shrunk to nothing, so my other kidneys are still there doing nothing, and the new one – I call it Sidney the Kidney! – is towards the front. It started working straight away.
“That was in January and in the March I met my fiancé Jay. About four years later when I was 27 I changed my medication and they told me to leave it a couple of months and then I could try for a baby. That was in the March and we conceived in the August! Now Olli is 18 months and Jay and I are getting married next year.
“My message to people thinking about becoming organ donors is this – imagine if it happened to you – that’s the biggest thing. A lot of people say they wouldn’t do it. Imagine if it was one of your kids, or someone in your family – I think until someone knows someone who’s went through it they can’t understand. People should definitely join because if it happened to you -you wouldn’t refuse it! Think of it that way.”