RAY HOLDING OFF DIALYSIS IN HOPE OF KIDNEY TRANSPLANT
WHEN Mallow man Ray Scanlon found himself on a waiting list for a kidney, his sister Norma O’Sullivan very generously put up her hand to see if she was a donor and when undergoing screening , she then found out she had a battle on her own hands – as she was diagnosed with cancer.
Ray told The Corkman while smiling that ironically it was a huge slice of luck for Norma as she had absolutely zero symptoms when she was undergoing the intensive screening for Ray.
He explained that during a second xray a shadow showed up on her lung which in turn required chemotherapy and surgery. Norma, who is now a retired nurse and married with a 20 year old son was never a smoker and this diagnosis came as “a bolt out of the blue.”
“The tumour that Norma had was so rare and really she was so lucky as she didn’t have a symptom in the world so when she was diagnosed, there was huge luck on her side as it was detected so early. I often think of it as Norma had offered to help me and then she had a battle on her hands herself. Thankfully, she has made a full recovery and she is living life to the full,” Ray said.
While Norma’s diagnosis was as Ray outlined a “shock out of the blue,” equally so was his.
Back in 2005, when Ray was 39 he was moving jobs and as part of the procedure he had to undergo a medical examination. He was fit and had always been so and felt that the medical was just another run of the mill hoop to go through. However, when he was sat down and told he had a kidney diagnosis of Glomerulonephritis, it was a huge shock to the system as he also “didn’t have a symptom in the world.”
“Just like Norma, I had no obvious symptoms and looking back now, I regard the diagnosis ironically as a lucky find as it was detected so early. If I hadn’t gone for that medical back then, who knows how I might be today? ” he said.
It is thought that Ray (52) who is a Bank Manager at Ulster Bank in Mallow, may have contracted a virus which attacked his kidneys. Over the last 14 years he has been under the excellent specialist care of Nephrologist Dr Liam Plant and his hugely dedicated team at Cork University Hospital. With so many trips in and out of the unit over the many years, Ray has got to know Dr Plant and his team very well and a huge personal relationship has been built up.
As he begins to chat, he points to the now almost empty rack of organ donation cards on his desk in his office in Mallow.
While Ray is very willing to tell his story he is doing so because of Organ Donation Awareness Week which is running from March 30 until April 6 and it is being spear- headed by Ray D’Arcy. The campaign is to encourage the public to support organ donation for transplantation by letting their loved ones know their wishes by simply doing so by #Have the Chat.
Long promised legislation governing consent for organ donation in Ireland is due to come before cabinet for publication and the mooted legislation has been on the back burner for the past 12 years which arose out of recommendations in the Madden Report.
The Human Tissue Bill aims to lay down a framework to obtain consent of parents and next of kin for the removal or organs, and is also to include for the first time an “opt out” approach to organ donation – whereby a deceased person would be deemed to have consented to donate their major organs, including kidneys, heart, lungs and liver.
However, as outlined by Ray under the present system, the decision rests with the next of kin even where the deceased person is the holder of an organ donor card, or who indicated their wish to be an organ donor on their driving licence.
Under the proposed legislation, there will be presumed consent unless the deceased, while still alive, had specifically stated he/she did not want to donate their organs. To avoid any sense of coercion, under the mooted new legislation, the next of kin will still be consulted, and if they object, the donation will not proceed.
At present, Ireland remains one of a few EU countries not to have an opt out system. The proposed Bill would also regulate the removal, retention, storage, use and disposal of human tissue from deceased persons. It will also provide general conditions for the removal, donation, and use of organs and tissues from the deceased and living persons of transplantation.
Ray said: “Organ Donation is hugely, hugely important and this is a discussion which families should have with their loved ones before a situation could possibly arise. For my family, we are very well versed in the importance of organ donation, but it is a conversation that needs to be had as no one knows what can happen to any family member.”
Regarding his own present situation, with a grin, he said that he doesn’t know if it is “genetics or sheer luck” but so far he has avoided dialysis and aims to do so as his aim is to go “straight to transplant stage.”
He has been on the kidney transplant waiting list since the Spring of 2017.
“I am a hugely positive person and while my kidney function has been very slowly declining over the years, I am hopeful of a kidney transplant. I attend the support meetings in Cork every month and this consists of both pre and post patients and it is really wonderful to sit with a group of people who are now your close friends and be able to talk. It really means the world as we have a shared plight,” he said.
Ray said despite the decline in his kidneys he gives huge credit to his wife, Anna Maria, and his 16 year-old daughter, Sarah for being his rock.
“They absolutely mean the world to me and really they are my rock. Both of them are just fabulous. Despite being in kidney failure, I will not let that define me. I am still at work each day in Mallow. I still play golf and every evening, I take out Oscar our Labrador for a walk,” he said.
The task of the kidneys is to remove waste and extra fluid from the body and they also remove acid that is produced by cells in the body. The kidney’s also maintain a healthy balance of water, salts and minerals – such as sodium, calcium, phosphorous and potassium in your blood. Without this balance, it means the nerves, muscles and other tissues in the body may not function normally. A key aspect of the kidneys is that they help to control blood pressure, make red blood cells and keep bones strong and healthy.
When a patient is on dialysis – it is an artificial way of taking up the task of what the kidneys are meant to do.
He said he has to watch his diet and while it is universally acknowledged that fruit and vegetables are good for the body, but because of his condition, he has to be careful about eating bananas, mushrooms, tomatoes, dairy and meat. The much beloved humble spud – must be double boiled to remove the starch and salty foods are a no no.
“A big aspect with my condition is blood pressure. If you cut the kidneys in half, they are like a sponge and they filter the blood and urine but three quarters of mine are blocked but I have another 25 per cent who must work harder and all of that can put pressure on blood pressure, so exercise and weight management are very important,” said Ray.
As earlier outlined by Ray, he said that he finds the support meetings in Cork really helpful. With the post op patients, he said: “I have often heard it said by people who have received an organ transplant that it is like a light is lit up after the transplant and it is only then that people do get to recognise the gift of transplant and organ donation.”