'I won't hesitate to give Mark one of my kidneys, like any mother I'd do anything to help my son'
Former Ulster Unionist MLA Jo-Anne Dobson tells Karen Ireland of the heartbreaking moment when she realised her son would need another transplant, how she hopes she can give a kidney to him and why she wants their story to inspire others to consider organ donation
Jo-Anne Dobson is talking to me from the now all too familiar dialysis unit at the Daisy Hill Hospital in Newry, her home for three mornings a week for the foreseeable future.
The former Ulster Unionist MLA turned business consultant is her usual, upbeat, bright and bubbly self.
However behind the smiles and chat Jo-Anne is adjusting to a new sense of normality after life changed dramatically for the whole family.
Two weeks ago her son Mark (24), who was born with renal problems and had a kidney transplant when he was 15, had to have the organ removed after it began shutting down.
To say this came as a huge blow for the entire family - Jo-Anne (50) is married to John (53), a farmer, and they have an older son, Elliott (26) - is an understatement.
"We are on the next stage of our journey," is how Jo-Anne puts it.
The fact that Mark himself is such an upbeat and determined young man obviously helps, too. Showing that he has inherited his mum's feisty spirit, he has chosen to meet this latest challenge head-on by setting up a 'Dobson on Dialysis' Twitter account to help raise awareness around the whole issue of organ donation.
Mark first realised all was not well in January when he found that his job was taking its toll on him.
He started feeling tired and was very lethargic. Since his transplant he had been carefully monitored by the hospital team and they broke the news that the kidney was beginning to shut down and the only option was to have it removed.
"We were devastated and we thought a lot about the family who had donated the organ," says Jo-Anne.
"Mark and I both felt it was like they were losing that person all over again, but they had given us an amazing gift for all those years when Mark was so happy and healthy. We will always be thankful for that.
"During that time we had a snapshot of what it was like to have Mark healthy. Now we're back to worrying about him being sick again. It brought it all back from that time when he was a baby.
"Many people have the misconception with transplants that when you get an organ that is you fixed. Sometimes, however, transplanted organs only last so long and Mark could need two, maybe three, operations in his lifetime.
"It has been a very challenging few months. We are a very close-knit family and we didn't tell too many people. Everyone would be asking after Mark and we would have to say he was doing okay when really he was entering another difficult part of his journey."
A fortnight ago Mark was brought into the renal unit in the City Hospital in Belfast and had his kidney removed.
For Jo-Anne, the hours that followed were among the toughest she has ever faced.
She adds: "Mark was only out of theatre and he was in a lot of pain. He had two lines put in at the same time as the kidney was removed - one for dialysis and one for home dialysis.
"Not long after the operation he had to be hooked up to the dialysis machine. It was difficult to watch the first one as he was in so much pain and doped up.
"It is an amazing unit, though, and we met so many different people at various stages of their journey and everyone talked and shared with each other.
There was a real sense of camaraderie with everyone rooting for each other. Some were just starting out and getting a new organ and others like Mark were having organs removed. During this time Mark and I were inundated with messages of love and support.
"We were also reminded that at least with a kidney transplant you can go on dialysis and wait for another organ. It is a different story if you need a heart, liver or lung. We know that."
In the end Mark did well and was discharged from hospital several days later.
Jo-Anne says: "I was so proud of him. He was very brave and just took it in his stride. I don't know if I'd have had that resolve at the age of just 24 to go through what he did. But Mark never complained or moaned once. He just got on with it."
Evidently, however, Jo-Anne has considerable reserves of courage herself, having supported Mark since he was a baby.
"Mark was born with reflux in both his kidneys. It went undetected for five weeks and by the time they had diagnosed it the damage was done. His right kidney had shut down completely and the left was operating at just 19%."
As a young and vulnerable baby, Mark had to have valves put in his kidney.
Jo-Anne freely admits she was "beside herself with worry" about the sick infant.
She explains: "Everyone seemed to be getting on with their lives. All the people around us had beautiful, healthy babies yet we were dealing with the fact that Mark was very sick.
"From the outset the staff at the hospital were brilliant with us. They sat us down and didn't withhold anything.
"At that stage they were able to tell us that Mark would require a kidney transplant at some point in his life.
"We just started getting on with life and making the most of our new family, enjoying every day. Life was busy but good."
When Mark was just 13, the family got the news they had been dreading: their son's kidney was starting to shut down.
"At this stage, we were told to make memories and enjoy family time before Mark got too sick and ended up on dialysis," says Jo-Anne. "We went to Canada and America and tried to make every second count."
Two weeks before he was due to start dialysis at the age of 15, in February 2009, the family got the call they had all been waiting for - a kidney had been found.
Jo-Anne adds: "Mark turned out to be a match and his transplant was carried out in the Royal Children's Hospital in Belfast.
"In the first year, we had a few setbacks and Mark ended up in and out of hospital but that was to be expected.
"We were so thankful to that brave family who made the decision that gave Mark this second chance. We couldn't thank them enough and they have always remained in our thoughts and prayers."
For almost nine years life became pleasingly routine for the Dobson family.
Mark finished school and went to Greenmount Agricultural college before joining his dad at work on the farm.
"We had eight-and-a-half wonderful years when Mark was fit and healthy and we were very blessed," explains Jo-Anne.
He never complained or moaned once. He just got on with it."
And now that has given way to a new routine, with Mark and Jo-Anne travelling to Daisy Hill Hospital every Monday, Wednesday and Friday for dialysis.
Jo-Anne is full of praise for the work of medical staff.
"Like all the hospitals we have been in, the care and attention from the doctors and nurses is second to none.
"Mark has built up lasting relationships in the ward and he has the same bed and the same nurses every day he is there. They have their wee rituals too like at the end of every dialysis session they are allowed a small chicken burger. You'd think it was a Christmas dinner they look forward to it that much," she jokes.
"We have the line in and it is hoped that once Mark is strong enough he will be suitable for home dialysis when he will be hooked up to a machine seven nights a week."
Jo-Anne was an MLA from 2011 until March this year. Prior to that she was a councillor. She had fought for a bill that would mean everyone was on the organ donation register unless they opted out, but it was rejected.
Her campaigning spirit, however, has been passed on from mother to son and Mark is putting the time he spends on dialysis to good use by helping others through social media.
"He has set up a Twitter account and is chatting to people and private messaging them about what it is like. I really admire him as he wants to help others through what he has been through.
"Even after his transplant Mark and I would go out to meet new families and tell people our story and share our experiences to help them."
For all the proactive response, it is clear, however, that life is now very different compared to a few months back.
"Mark can't farm at the minute and he must have a controlled diet. We have to be careful about what he eats or drinks and it is all recorded. He is cold all the time so we must have the heat blasting even on a good day."
She admits that she finds it tough to see Mark lose the freedom he had enjoyed for so many years.
"It is hard for me watching my son being hooked up to a machine every other day but for now this is just something we have to go through.
"We have a strong faith and I always believe God will never give you more than you can handle. Right now, Mark needs the dialysis to keep him alive."
Jo-Anne says that she tries not to think too far ahead, preferring just to take things one step at a time.
"When Mark becomes stronger and heals he will be put back on the transplant list and at that time all the family will be tested to see if any of us or the wider family circle are a match.
"I wouldn't hesitate to give Mark one of my kidneys if I could. Like any mother I would do anything for my son. If one of us is a match that will be fantastic.
"We just hope that by sharing Mark's story we can encourage people to talk more about donation and if more people sign up then more lives will be saved. Those are the simple facts.
Jo-Anne adds: "In the meantime, Mark hopes to continue to help other people through Twitter and by starting to write a blog.
"There are so many people out there that are going through this and some of them have no one to talk to or no support. We are very lucky that we are a tight family unit and can support and help each other."
Follow Dobson on Dialysis at @DialysisDobson