Dialysis impacts ‘my whole family’ – man awaiting transplant
While he has a busy schedule balancing his time between his job with cattle genetics company Dovea, his farm, and his young family, Kilnaleck man Colm Chambers says he has to make dialysis sessions his first priority.
“Dialysis comes first. I’m in every Tuesday, Thursday, and Saturday from 7am to 12:30, and then I go about my day’s work. It’s time-consuming, but for the moment there’s no alternative to it. If I don’t do it, I’m dead, and I’m no use to anyone.”
He shared his story with The Anglo-Celt during Organ Donation Week 2023, which runs from May 20 to 27.
Colm began to experience problems with his kidneys in 2003 and found out he had one kidney operating at 75%, while the other one had a working capacity of just 25%. With medication and some lifestyle changes, the progression of his declining kidney function was stationary for almost 15 years. He managed to stave off dialysis treatment for a few more years until his kidney function reached a point where he could no longer continue without it.
In 2019, he began his dialysis treatment, first in Beaumont, before moving to Cavan General Hospital. He paid tribute to the staff in the hospitals who he said were a great comfort to him as he faced the treatment, which he knew little about.
“The staff are incredible. They make me feel welcome. They help me with everything I have a problem with. When you start off, you’re so afraid, you don’t know what’s coming. They’re so empathetic. They were like family to me,” he says.
Colm says, when he first started the treatment, it took a toll on him but he learned to adapt to it.
“I got a taxi up to Beaumont but I slept in the back of it on the way home. My body was wrecked as I tried to get used to it. The taxi driver was like an extension of me. When I came out of my sessions, I used to feel very cold even though it was summer, and the taxi driver used to turn on the heat for me. He’d be like a dog hanging out the window trying to cool off, because he was looking after me. He was very understanding.”
Colm says that dialysis had a much bigger impact on him than he initially thought and he encountered issues he never imagined.
“Restless Leg is a symptom associated with dialysis. It’s where the leg starts twitching and moving and you have to get up to move around, It usually comes on at night time when I’m trying to sleep. If people knew of half the things that happen with it before then, they wouldn’t go through with it. Another symptom is you lose a lot of your strength. I used to AI cows and do freeze branding, but I’m not able for it anymore. I was told not to do it, because I struggle too much. I’ve had to adapt. When I’m farming, I have to be very precise. In the past, if I was loading something on or off a trailer, I’d be able to push it myself, but I can’t do that anymore, I have to be very accurate when I’m pulling up to something.”
Colm also says that dialysis has a major impact on his loved ones as well.
“Dialysis doesn’t just affect me, It has an impact on my whole family. I have two small kids, it has an impact on them and my partner. They all have to buy into it. An example is they all have to adhere to my diet. I can’t eat a lot of vegetables, especially anything high in potassium, such as bananas, peas, corn, or tomatoes. If I eat potatoes, they have to be boiled twice. They have to be cooked with cold water, which is brought to a boil, then when it’s starting to boil, they have to be switched to using fresh boiling water, so the starch and potassium are taken out of them.”
Another complication that dialysis patients have to deal with is balancing the liquid in their diets, as Colm explains.
“We’re only allowed a litre of liquid a day, from both liquid and food. The more liquid you have, the harder it is on the dialysis. During the summer I suck on ice cubes to try to stay cool and hydrated, but it’s still very hard to stay under the limit. I’m on the phone a lot with farmers, which leads me to sip on water.”
He hopes to get a transplant soon. “I’m trying to lose weight so I can get a transplant. If I can get below my limit, I’ll be eligible for a transplant. I had a busy few months at work, so I couldn’t exercise as much as I liked. There are a number of other issues. If a kidney becomes available, I could get a call-up and if my bloods are wrong on the day then I could be knocked on the head for a while.”
He also encourages more people to sign up to be organ donors.
“People don’t realise how grateful the people who receive the organs are. If someone passes away, by donating the organs, their relations can keep the memory of their loved ones alive. Legislation is being looked at, that if it’s passed, will mean that everyone has to opt out of their organs being donated. Not opt-in. Organs are no good if they go to a grave. It needs to be pushed through the Dáil. People need to have the conversation and tell their families that, if something happens to them, then their organs be donated. It’s not an easy chat. But it can help so many people.”
Despite his circumstances, Colm refuses to indulge in self-pity.
“It’s tough. There’s no denying it, but there are a lot of people far worse than I am. There’s no point in sitting at home feeling sorry for myself.”
Organ Donor Awareness Week 2023 runs from May 20-27. It is organised by the Irish Kidney Association (IKA) in association with the HSE’s Organ Donation Transplant Ireland (ODTI). This year’s theme is ‘Don’t Leave Your Loved Ones in Doubt!’
The key message is that people can play their part in supporting organ donation for transplantation by ensuring that their families are not left in any doubt about their wishes around organ donation.
The Irish Kidney Association also provides their ‘Digital Organ Donor Card’ free to download from the App Store and the Google Playstore.
Individuals can also permit ‘Code 115’ to be included on their driving licence.
Donor Cards can also be requested by visiting the website www.ika.ie or phoning the Irish Kidney Association on 01-6205306 or Free text the word DONOR to 50050.