Omar Kouch, drummer with Bedford band, The Scruff, is currently on the transplant waiting list. He’s been waiting nine months for a new kidney.
Thousands of people in danger of developing kidney disease remain totally unaware and risk damaging their health irreversibly.
Often referred to as a silent killer due to its lack of symptoms in the early stages, kidney disease is more prevalent in people with high blood pressure, diabetes and heart disease, but all too often gets left unmonitored.
To mark World Kidney Day today, we spoke to Omar about the realities of living with kidney disease and to raise awareness of the importance of organ donation.
“I have been drumming with The Scruff, on and off, for around seven or eight years now,” said Omar. “Since being diagnosed I was able to play some live festival shows with the band last summer.
“But I’ve switched to hemodialysis, so now I’m pretty much restricted to the studio – which is still cool, but different.”
Despite being diagnosed some time before, Omar was only successfully added to the organ transplant waiting list in June 2018.
“Kidney disease, and end-stage renal failure in particular, can manifest itself in many ways.
“As we all have different physiological build-ups, each person may experience different symptoms.
“These may include: loss of sleep, pains around the body, low immune system, cramps, itching, breathlessness, fatigue, change in appearance, hair loss, nausea and many more.
“It is also important to understand that someone suffering with this disease may look and act fine.
“On the inside, however, that person could be screaming with any or all of he above symptoms. I cannot emphasise this enough.”
While undergoing hemodialysis, Omar has daily constraints on his diet, including fluid restrictions to prevent the body retaining water.
“I’m only allowed a total of 1200ml per day, including fluid in food, and I have to avoid foods high in certain minerals such as potassium and phosphorous.
“These are put in place to keep the heart and vascular system as healthy as possible during treatment and then potentially for a transplant.”
Although these restrictions seem harsh, Omar quickly learned what was good for his body and what was not.
“Of the many things that I have learned from this disease, one thing that is clear is that everyone will go through this differently. There are hard days and easier days.”
Omar’s band members in the Scruff have not only signed themselves up for organ donation, but have taken it upon themselves to raise awareness on and off stage.
We asked Omar what a kidney transplant would mean to him.
“A new kidney would mean so many things. The ability to do every day things with ease, the option to go on holliday or just go away for several days without the need to dialyze, being able to drink and eat a bit more freely and, of course, the ability to tour with the band.
“I have been lucky in the fact that many people came forward to try to help me. From my family members to my best friend, I was overwhelmed by the support.
“Through the band, we also had several people (now friends) approach me and offer up their kidney.
“A couple of these people are now in the testing stage, with one woman about to have her final stage of testing done very soon.
“Kidney disease can bring its dark days, and it’s important that those around you know how you are feeling.
“If you suffer from kidney disease and you feel like you need to talk to someone, please do so. I found it very useful and your local renal centre will have a renal counsellor available.
“They’re very good at their job and I can not recommend their service enough.”
The new law regarding organ donation will make a big difference to this in Omar’s position. “I believe that the new ‘opt-out’ law coming in next year is really going to help change lives.
“With many more organs available, we can expect many less people to have to undergo treatment and hopefully be paired with a new organ much more quickly than it takes at the moment and this applies not just to kidney patients, but to all of those needing the gift of a new organ.”
The World Kidney Day campaign aims to draw public attention to the importance of maintaining a healthy lifestyle to protect the kidneys, the risks for developing chronic kidney disease (CKD) and the impact it has on patients.
Professor of Renal Medicine at Imperial College Healthcare NHS Trust in London, Liz Lightstone said: “Early attention to diet and lifestyle, and – where needed – appropriate medications, can prevent or delay progression of CKD in those most at risk.
“Symptoms are uncommon until damage is advanced. Sadly many people remain completely unaware of their risk and only find out when there is irreversible damage and people are then completely reliant on dialysis or a transplant to stay alive, neither of which are easy.
“Yet it’s so simple to get a kidney check – your GP just needs to check your blood pressure, your kidney function (through a blood test) and check your urine to see if there is blood or protein present.
“If you have diabetes, high blood pressure, heart or circulation problems, or a family history of kidney troubles, please ask to have a kidney health check.”
Up to 40 per cent of people with diabetes will develop kidney disease, so regular monitoring, at least annually, is recommended.
You can join the Organ Donation Register here.