Heartache and hope
Like so many people before you, when someone close to you, or yourself, is diagnosed with kidney disease, you may be baffled and unable to understand the implications. You will probably struggle to get your tongue round the word “nephrologist” and have to consult with doctor Google to find out what it means (it’s a kidney specialist, by the way, so rare in South Africa that not one has a practice anywhere in Mpumalanga).
Normally, patients who suffer from a hereditary or another underlying condition, know years in advance that one day, their kidneys will fail.
Because the disease is degenerative (it’s irreversible and gets progressively worse), there is no “fix”. Lifestyle changes can slow down the process, but if you have chronic kidney disease (CKD), the only question is how long it will take.
Unfortunately, you’ll be met with a fair amount of ignorance. Many other illnesses, like cancer, heart disease and even diabetes, are well covered in the media with much being done to create awareness. Kidney disease? Not so much.
Let’s dispel a common misconception straight away: dialysis is not a treatment. It does only about 10% of the work of functioning kidneys and nobody gets “better” on it – it is merely a way of keeping patients alive until they (hopefully) receive a donor kidney.
And even then, there are no guarantees. Although you’ll often hear stories about a transplanted kidney lasting for decades, the reality is that it has an average lifespan of about 10 years. And that’s fairly good.
What do they do?
Our kidneys are little miracle workers. Bean-shaped and each about the size of a fist, they are located just below the rib cage against the back muscles, one on each side of the spine. Relentlessly, they filter waste from our blood, balance body fluids and form urine – and then some. The list of kidney failure’s side effects is astounding. None of us pays them much attention, until their function is compromised – and more often than not, it’ll be too late.
And those headache powders knocked back with an energy drink to alleviate a hangover? Pure, unadulterated evil, kidney-wise.
What causes kidney disease?
In most cases, kidney failure is caused by other unrelated health issues doing permanent damage, little by little and over time. Diabetes and high blood pressure top the list, but are not the only culprits.
Other problems causing havoc are autoimmune diseases like lupus, genetic conditions such as polycystic kidney disease (the growth of numerous cysts in the kidneys) and nephrotic syndrome (where large amounts of protein leak from your blood into your urine).
Damage due to an accident could also set it in motion. And those headache powders knocked back with an energy drink to alleviate a hangover? Pure, unadulterated evil, kidney-wise.
Frustratingly, some people never find out what caused their CKD and are only diagnosed once their organs are nearing failure – end-stage renal disease. By then, they are in need of drastic intervention and desperately ill.
Getting hooked up
Numbered from stage one to five, end stage is the final and fifth phase, when one’s survival depends on a machine. In basic terms, it acts like a swimming-pool filter: blood leaves the body, is cleared of impurities and pumped back into your system.
Typically, a patient will be diagnosed early and his or her kidney function monitored regularly. Once the deterioration approaches a point where dialysis is necessary (around stage four), patients undergo an operation by a vascular surgeon, connecting an artery to a vein, usually in the upper arm (arteries carry blood from the heart to the body, while veins carry blood from the body back to the heart). Called an arteriovenous or AV fistula, it takes at least six weeks to “mature” and be ready for use.
In an emergency situation, where a patient needs immediate intervention, a tunneled (inserted just under the skin) catheter will be used temporarily with direct access to the main artery in the neck.
Matrix-like, two tubes (one blue, one red) exit through the chest, and are plugged directly to the haemodialysis machine. Used only when absolutely necessary, a catheter is not ideal, as it is prone to blockage and infection.
Peritoneal dialysis is an alternative treatment to haemodialysis. A special sterile fluid is introduced into the abdomen through a permanent tube that is placed in the peritoneal cavity.
The fluid circulates through the abdomen to draw impurities from surrounding blood vessels in the peritoneum, which is then drained from the body. It gives patients more control as it can be carried out virtually anywhere, but requires training and careful supervision.
The problem with dialysis
When described as a procedure done for four hours at a time, three times a week, it doesn’t sound too terrible. Surely life could be arranged around it? Unfortunately, like everything else involving renal failure, the answer is not that clear-cut.
Dialysis takes it out of you. Drained and exhausted, patients will tell you that “dialysis days” are a write-off. Many won’t be able to drive home afterwards and will spend their remaining hours recuperating.
By the time they feel better (usually by the next day), it will almost be time for the next session. Some individuals manage to hold down a job, but only in unusual circumstances with a sympathetic employer, supporting flexible working hours. Dialysis, as they say, is not for sissies.
Paradoxally, while saving your life, it also kills you. Because of the impact it has on the body, it causes other serious health issues, including anaemia, bone disease, high blood pressure, heart disease and nerve damage. In exceptional cases, people survive for decades, but the reality is that the average life expectancy of a patient on dialysis is about five years.
To put it bluntly: if you need a new kidney, you’ll have to find it yourself.
So, let’s talk transplant
Unfortunately, the vast majority of patients in South Africa will die, not waiting for a kidney, but never having the hope of a transplant in the first place. To cut to the chase: organ donation is considered a cultural taboo. Coupled with the high incidence of HIV/Aids, there are simply no kidneys to be had. To put it bluntly: if you need a new kidney, you’ll have to find it yourself.
Signing up to become an organ donor after death is a simple, short process, can be done online and costs nothing, yet only a minuscule proportion of our population do so. The opportunity to give the ultimate gift, to save a life and leave behind a legacy, is passed up on, mostly through ignorance and apathy.
Humans need only one kidney to survive. Unlike a heart or liver, which has to come via a deceased person, anyone healthy enough to pass the rigorous screening process can donate. After the transplant your remaining kidney will enlarge to compensate for the extra workload it’s been tasked with, but donors live long, healthy lives. In fact, they live as long, if not longer, than non-donors (probably due to being in good shape to start off with, coupled with a greater awareness and adherence to sensible lifestyle choices afterwards).
And there’s more good news. Anti-rejection drugs, a lifelong commitment for recipients, are improving every year, which means the chances of a successful transplant are increasing. It also makes finding a match so much easier. Unlike years before, being an exact genetic match is less of an issue – the odds of being able to donate to a complete stranger (as opposed to a close blood relative) is higher. Lastly, the costs of a transplant, including all donor tests done beforehand, are covered by the recipient’s medical aid.
Labour of love
Marinda Koorts is a sick woman, her health problems originating in childhood. At 16 her gall bladder and part of her stomach were removed, causing a condition called dumping syndrome, where large amounts of food are passed into the small intestine too quickly. Stomach pain, cramping and nausea have been part of her life for 44 years, in spite of adhering to a heavily controlled food regime. She also inherited polycystic kidney disease from her mother.
“I never realised what hell my mom must have gone through, because she never complained. She was trying to protect me. At one stage I became angry at her for not preparing me for what was coming.”
Always knowing that kidney failure was on the cards, by the age of 55, Marinda became seriously ill and had to start dialysis treatment. It was a tough time, health-wise, and she found it harrowing.
Three times a week husband Leon would load Marinda in the car, drive her to the B Braun Avitum Dialysis Centre at Sonpark Centre in Mbombela, all the way from Barberton. Immensely patient, he seems to have only compassion for his sick spouse. While she was connected to the machine, he would while away the time.
“All those hours,” he smiles. “I used to carry out a chair and watch people coming and going in the parking lot.” At times, he would accompany Elsmarie Owen (in charge of the centre) when she picked up supplies; on Saturdays he would whip up an English breakfast for patients. “I think they really miss him at the centre,” Marinda smiles. “It wasn’t pleasant, but we had a lot of laughs, too.”
Stomach pain, cramping and nausea have been part of her life for 44 years.
Leon volunteered his kidney, but unfortunately, it wasn’t compatible. In the meantime Marinda’s health continued to deteriorate. By then she had been bedridden for years, and weighed less than 40kg. Friends would drop by to say goodbye; her life was hanging by a thread.
Her daughter, however, was a match and in June last year, the transplant took place. Although still frail, Marinda insists she’s made a turnaround. “I don’t want to sound ungrateful, but at one stage I simply wanted to let it all go – I didn’t want to live any longer.” It’s still no bed of roses and the anti-rejection drugs takes some getting used to, but she’s grateful.
She’s not 100%, but acknowledges her medical history puts her at a disadvantage. “I might not have made a miraculous recovery, but I’m a special case,” she smiles, “The important part is that I’m alive.”
A new lease on life
Janine Kruger is beaming after her kidney transplant at the end of last year. A diabetic since childhood, she’s coped with limited kidney function all her life, coupled with a strict dietary regimen associated with the illness. Two years ago, however, her health took a turn for the worse and she became bitterly ill, she says.
By chance, she met Elsmarie, who referred her to doctor Heleen Bierman, B Braun Avitum Dialysis Centre’s visiting nephrologist. When Janine saw the doctor, she was so sick she could barely sit up straight, she recalls. Heleen was keen to organise a transplant before starting Janine on dialysis, as it increases the odds of the operation being a success. The barrage of tests preceding a transplant commenced at the end of 2015.
But time wasn’t on their side. By mid-July Janine was fitted with a catheter and started peritoneal dialysis. Adamant that she wouldn’t accept a transplant with an organ from “someone I know”, she refused when offered a kidney by her sister – but her family had other plans.
I will never take my sister’s kidney for granted. I want to live my life to do her sacrifice justice.
Behind her back, her sister initiated the testing. It took a strongly worded phone call to convince her, Janine smiles. “She asked if I would do it for her if the roles had been reversed, to which I replied ‘Of course!’ That kind of settled it. She wouldn’t take no for an answer.”
On December 9 Janine received her sister’s kidney, which started working immediately. “I felt fantastic,” she says. “I could barely sit still I had so much energy.” Always an active person, it didn’t take her long to get going. “By the second week I was taking walks and cycling. At three weeks I begged the doctor to allow me to drive for short distances.”
Horse riding is out of the question for the time being, but for the rest, it’s business as usual. Janine drew a number for the Skukuza half-marathon in August and seems pretty determined to compete. “The only hectic aspect is the anti-rejection drugs,” she says, “but I’m getting used to it. With my diabetes, I’ve been disciplined all my life.”
She refers to herself as gratitude personified. “The change has been drastic and I feel incredibly blessed. I pray that the kidney will last for the rest of my life, but will never take my sister’s kidney for granted. I want to live my life to do her sacrifice justice.”
At the helm
Elsmarie Owen is in charge of B Braun Avitum Dialysis Centre at Sonpark Centre. An earth angel, she is a wealth of information with a special compassion for patients and their families. A clinical technician, she has been with the unit for 20 years. The centre runs the Kidney Wise programme, in conjunction with health professionals, in which patients at the highest risk for kidney disease are identified and monitored. By managing their health conservatively, their kidney function can be prolonged. It also helps prepare patients for dialysis and pursues the possibility of a transplant before going onto dialysis.
Get in touch
B Braun Avitum Dialysis Centre, Sonpark Centre, 013-741-1054