A new life awaits Robert

However, after March 9, 73-year-old Eglinton businessman, Robert Smyth, will begin a new phase in his life - for he will carry inside him one of his daughter Iilona’s kidneys - and every wish and prayer his devoted daughter can utter for his retirement years to be filled with health at long last.

Robert’s illness, and at time he was life-threateningly ill, has had a pronounced effect on his life - let’s face it there is no such thing as a family holiday when you have to be hooked up to machines every two days is there? But his fortitude and conspicuous efforts to look after his health have paid off. In a frank interview with me, Robert and his daughter Iilona are appealing for the people of County Londonderry to support World Kidney Day on March 10 - the day after his life-giving surgery - by filling out a Donor Card and learning more about renal illness, its treatment and how signing the donor register could mean the difference between life and death for someone in real need. He would also like to see legislation on organ harvesting re-examined and changed so that waiting lists become a thing of the past.

“World Kidney Day is coming up on March 10, and on that day kidneys will be the main focus. All being well on March 8 my daughter and I will go into hospital and have surgery on March 9, so we will not be at Altnagelvin Renal Unit for World Kidney Day,” he says, revealing that he is treasurer of the recently-formed Renal Support Group, set up to raise awareness of ‘all things renal’.

“On the evening of the 10th the renal unit at Altnagelvin will be opened for anyone who has any interest to come along and see round the unit. People will be given conducted tours and have their questions answered. Members of the Altnagelvin Renal Support Group will also be in attendance, which was started about six months ago, and we are trying to highlight renal problems,” he says, warming to the subject.

Robert tells me that in Spain there is no problem with organ shortage - there you have to opt out of donation.

“If you don’t opt out specifically your kidney or any other organ will be taken and used and they have no problem with that, he says, adding: “I think part of the problem with organ donation shortages here is if you have not had anyone close to you with the problem it does not become a big issue. It is only when it hits your own doorstep that people realise that there is an issue and there are people in need of donors; and it’s not just kidneys, it is all organs.”

It is hard to believe, sitting talking to Robert that his ‘kidney trouble’ as he calls it, started 40 years ago.

“They think it evolved from me having a problem when I was two-and-a-half. They think I had pneumonia, and they think it was out of that that my problems started,” he says.

Briefly outlining how he was tested and how a biopsy showed both kidneys were diseased, but could not tell how and as a result, could not treat his condition, all they could do was tell Robert that his kidneys would continue to function for a period of time, but would, ultimately, fail. He was told to “live your lifestyle in such a way that you get the best chance possible because the time will come when your kidneys will fail completely”. And that is what he did. Robert doesn’t even drink tea or coffee, and if you read his personal account on Page 13 opposite, like me, you will be amazed.

When I ask him what it would mean to him to have a kidney and not have to worry about medical issues, he says: “It would just give me so much freedom. I have got to attend the renal unit every other day: Tuesdays, Thursdays and Saturdays and therefore, you cannot plan to go anywhere. You can’t go on holidays. If you want to go to England, for example, and you can arrange in advance maybe they could get you in to a renal unit in England, but it is such a complicated issue that people just don’t bother because most renal units are full up and there are waiting lists to get.”

In most circumstances in Northern Ireland people usually have to wait until someone dies before they can have a ‘harvested’ kidney or other organ, but in Robert’s case, his daughter, Iilona, is donating her kidney.

“I have never asked any of my family for a kidney. They have all come forward and volunteered; I had two sisters, my son, my son-in-law (Iilona’s husband). But it has to be almost a perfect match otherwise they will not take the risk, because the way they look at it is this: Why put someone through a serious operation which is not essential for them to have unless it has got every chance of it being a success, and for them to recover completely. Iilona’s husband went up and was tested and he was compatable with me, but when they mixed the two bloods together my red blood cells fought his, therefore it was not going to work. He was the fourth, so her ladyship stepped forward,” he says laughing.

It is clear sitting in close proximity with Robert and Iilona that they share a special bond, and Iilona is as committed to playing her part in the process of her father’s return to good health, and that while she is anxious, she is not intimidated by the prospect of surgery. She talks freely about what her surgical options were, revealing that she has chosen to be incised beneath the navel and for laproscopic removal of one of her kidneys. She faces a shorter recovery period than her father and hopes to be home the weekend after the surgery, but she also realises that it will take up to three months before her body has returned to full ‘capacity’. It is an incredible commitment for a mother of three young children.

“Was I anxious? I think in the last week or so I have become a little more anxious as it comes closer to the surgery, I think that that is normal. Initially I wasn’t and when you talk to the surgeons and you do a bit or research, again they don’t in anyway jeaopardise me or put me in any compromising situations, I think it is normal to be a wee bit apprehensive.”

Iilona started to undergo testing over a year and a half ago, and both she and her father are adamant that it is “too long”. In America testing without complications until surgery is six weeks. In America patients pay for their treatment and the system is ultra efficient, whereas testing here in Northern Ireland is a staccato affair with a person waiting for a year until they are either accepted or rejected for surgery.

“It would certainly help if more people carried donor cards. It is a big issue and that is what we are trying to highlight with World Kidney Day, and that people would start thinking about these things. Having said that the surgeons in Belfast are much happier if you have a close relative because they think there is a better opportunity for your recovery and less likelyhood that your body will reject the organ,” says Robert.

Iilona takes up the thread of the conversation: “I think I won’t really understand what has happened until the surgery is over, because I see him at the minute and he leaves at 7.30am when it is dark and he goes to dialysis. While dialysis is great because it keeps them alive, but it is limiting for them, it is like a prison. The patients are alive but they have to follow rules and they cannot move out of them, so while he is still here, he is only getting half a life, so I won’t really know the difference this will make until the surgery is over and everything is done and you can see the difference.”

Talking in glowing terms about her father’s commitment to keeping himself as well as he could, she said he swam every day, did Yoga, went to the gym, you can see she knows he has had to cut out a lot from his life because of his renal failure.

“When he gets all those things back I will be able to see, and say ‘Wow, he got that back’ and I am delighted to be able to help him do that,” she says.

Surgery and a good recovery will mean that Robert and others like him will be able to do what the rest of us take for granted - go on holiday with just some light clothes, toiletries, sunscreen and a handfull of tablets. Robert knows he will have to take anti-rejection drugs and the rest, but he also knows that he will, for the first time ever, be able to live normally

”It will be like being a new person, and able to travel the world,” he says matter-of-factly.

Not very long ago there was one kidney transplant a month, and according to Iilona this year they are aiming for 80 or over.

“It costs the government £35,000 a year to keep someone on dialysis, whereas it pays the government to have the operation performed as there are cheaper aftercare costs of about £5,000 a year,” says Robert revealing there are plans afoot to increase the number of operations and get as many people as possible through the transplant procedure so that it will save money.

Iilona reveals that there is a ‘bank’ for organs: “What they have at the moment is something almost like a three-way swap where if my kidney is not compatable I can put my kidney out there into the bank and give it to someone, in the knowledge that someone else has theirs in the bank too and will give it to my dad.”

Anyone can go forward and register for the service, and give a kidney.

“I know some people would kind of have an issue with me being young and would look at me and say ‘She’s a young mother with children and he is an old man and has lived his life’ but because all his other organs are healthy and he has taken care of himself, they say he could get another 15 years of life. How do you put a value on that? Fifteen years is a good stretch,” she says, adding: “As a woman you go through the pain and suffering of having a child because you want the child to have a chance of life. This is the same thing in reverse.”