Sorrowful tales of people with kidney failure as morbidity, mortality rise

Today is World Kidney Day (WKD). The WKD, observed globally today, Thursday, March 14, 2019 is a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF) set out to raise awareness of the high and increasing burden of kidney diseases worldwide and the need for strategies for kidney diseases prevention and management.

The global awareness campaign with the theme: “Kidney Health for Everyone Everywhere” calls for universal health coverage (UHC) for prevention and early treatment of kidney disease and to also raise awareness of the importance of kidneys to overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.Kidney failure/disease is a health condition where the patient’s kidney fails and can no longer function well enough without dialysis or transplant for survival.850 million people worldwide are now estimated to have kidney diseases from various causes.

This figure, the ISN said is twice the number of diabetics (422 million) and more than 20 times the number of people with cancer (42 million) or Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome (36.7 million), making kidney failure the eight leading cause of death.

According to the ISN, Acute kidney injury (AKI) and the Chronic Kidney Disease (CKD) cause at least 2.4 million deaths per year.
AKI, an important driver of CKD, affects over 13 million people worldwide and 85 per cent of these cases are found in low and middle-income countries (LMICs) including Nigeria. Around 1.7 people are estimated to die annually because of AKI.

Indeed, CKD and AKI are important contributors to increased morbidity and mortality from other diseases and risk factors including cardiovascular disease, diabetes, hypertension, obesity, as well as infections such as HIV, malaria, tuberculosis and hepatitis. Furthermore, CKD and AKI in children, not only lead to substantial morbidity and mortality during childhood but also result in medical issues beyond childhood.

The ISN Group’s President, David Harris and Past President, Adeera Levin noted that chronic kidney diseases (ones lasting more than three months) affect 10 percent of men and nearly 12 percent of women globally.They stressed that more than 13 million people suffer acute kidney injury, as some go on to develop chronic kidney disease or kidney failure, noting that up to 10.5 million people need dialysis or a kidney transplant,” but many do not receive these lifesaving treatments due to cost or lack of resources.”

In Nigeria, according to the Nigerian Association of Nephrology (NAN), 13.9 per cent of the 197 million people are said to have kidney failure. It revealed that the majority of sufferers are of the working-age population, with the condition resulting in the loss of jobs and poverty.Several studies indicate that 17,000 new cases of CKD are diagnosed yearly and only 2000 can afford dialysis treatment in Nigeria.

Nephrologists are unanimous that dialysis is the end of the road because it is very expensive. They say, ideally, dialysis costs N90, 000 a week and N360,000 monthly apart from medications that help control the blood pressure. They insist that it is cheaper to prevent than treat because if the person were not placed on dialysis, he or she would die.

Indeed, many patients with chronic kidney disease have lost their lives because they could not afford a kidney transplant, which is the only sustainable solution to saving them.Transplantation is considered the most cost-effective treatment of CKD. However, it has high set up costs with regard to infrastructure and requires highly specialised teams, availability of organ donors and cannot be done without dialysis backup. Physical and legal infrastructure requirements and cultural bias against organ donation often present barriers in many countries, making dialysis the default option.

Meanwhile, Love Ferisope Ologun would have been celebrating her 23rd birthday now, but the cold hands of death took her away as she could not fulfill her dreams of going to the tertiary institution to further her studies like her friends did.Love was diagnosed with end stage chronic kidney disease in April 2017 when she was 21 years old. As at the time she was told she had the ailment, her world began to end as she walked on a tightrope and her life hung in the balance.

For her, it was a complicated one as she also suffered from a long history of hypertension with periorbital and leg swelling.
Periorbital edema is a term for swelling around the eyes.Her parents took her to Olabisi Onabanjo University Teaching Hospital (OOUTH), Sagamu, Ogun State, where she was admitted and underwent hemodialysis, twice a week in order to sustain her life, which the family could no longer afford because they had exhausted all the money they had on them.

Her mother, Mrs. Oluwafunmilayo Ologun, in order to save the life of her promising daughter, resorted to begging, even using the media as an avenue to get financial assistance to help her daughter live to fulfill her dreams. Doctors said the only solution was a kidney transplant, which would cost N10 million as Love’s renal disease was in the end stage.

Her mother, Mrs. Ologun told The Guardian that her daughter remained on admission with severe pains as she underwent dialysis, adding that her ailment had taken a toll on the family’s financial status. Ologun said since there was no money to get her daughter treated, she passed on in September 2017 and the family has never relieved themselves of her painful death.

“She has passed on since September 2017. People didn’t respond, the little we could do wasn’t enough to save her. We couldn’t get money to save her life through the kidney transplant and she died at her prime,” her mother sobbed.Like Love, Tammy Ivo Francis suffered from kidney disease, which was in its end stage. The mother of two, who died in March 2018 at age 38, would have been saved if she had a kidney transplant that costs N10 million.

Tammy was helpless and confined to her sick bed at Alimosho General Hospital, Lagos and was unable to perform her duties as a mother and wife, while her husband, Mr. Francis ran from pillar to post in the effort to care for her treatment and also cater for the family.

Francis who also resorted to different means to raise money for the kidney transplant of his wife said she would have been alive if people had come to her aid. He recalled that Tammy’s predicament began in the middle of the year 2016 when she developed malaria and fever and was then taken to the hospital in which after several tests, it was discovered that her Packed Cell Volume (PCV) was only 20 per cent, adding that doctors suggested taking her to a general hospital for further clarification.

“She started having high blood pressure since 2011, and in 2016, she started treating malaria not knowing that it was something else. So we went to the Lagos State University Teaching Hospital, LASUTH, where they discovered her blood pressure was high. From there we went to Gbagada General Hospital where we were referred to Lagos Island General Hospital where my wife was diagnosed with kidney failure and recommended urgent dialysis.”

Francis who hails from Ohaozara Local Government Area of Ebonyi State disclosed that after dialysis, Tammy was asked to prepare for kidney transplant as the only way to preserve her life.“I started crying, it is God in heaven that has been sustaining us. She does dialysis three times every week and I don’t have such money. We have two children aged 13 and nine and we lived in fear that if she does not dialyse at the appropriate time, she would be breathless,”

Francis, who was in tears told The Guardian that they had a donor but money remained the challenge of getting her that transplant she needed as she eventually died, “leaving me, her husband and our two daughters.”Nnagbogu Obichukwu, 43, a father of four may likely not live to fulfill his good promises to his children except he undergoes an urgent kidney transplant to save him from being taken by the cold hands of death, just like Love and Tammy.

Obichukwu who hails from Ezeagu Local Government area in Enugu State had been diagnosed with End Stage Renal Disease, ESRD, at the Lagos State University Teaching Hospital, LASUTH. He is also being managed for hypertension and diabetes mellitus for 15 years.

Obichukwu has been bedridden, as his condition gets worse, with even the weekly hemodialysis not helping his condition, as he is unable to meet the required dialysis, which is thrice a week.Narrating her husband’s ordeal to The Guardian, Mrs. Mary Nnagbogu said it all began like malaria and typhoid in 2004, but after a series of lab tests, they found out he had developed diabetes and was placed on treatment.

She said in 2015, the sickness brought him down completely to the extent that he was unable to walk and couldn’t recognise people around him and was quickly rushed to the hospital where they detected he had tuberculosis and was placed on six months treatment.Mary said her husband was discharged after the treatment and they went back home, adding that they were directed to consult a nephrologist for further diagnosis.

She said when they were told her husband had kidney problem; he was later placed on medication. Mary said unfortunately in early 2017, Nnagbogu began to vomit and defecate continuously; lost his appetite for food and became weak that he was taken back to the hospital where they were told his kidney was no longer functioning.

“The doctor placed him on dialysis but recently the doctor told us that the best thing is to change the kidney and presently we have seen a donor but we do not have money for the transplant which doctors at LASUTH, estimated to cost N13 million,” Mary sobbed.

Mary who busted into tears said despite pleas to Nigerians and their state government to come to her husband’s aid, no one has turned up and his condition keeps deteriorating daily as he can no longer stand on his feet nor do things on his own.“His ailment is still there and getting worse, no money to treat him, he can’t even walk on his feet. We assist him to sit, stand and bath as well as pass out urine and faeces,” she cried.

Mary said her husband was a businessman that sold hospital equipment at Lagos Island, but his illness has taken a toll on the family finance as he sold his shop and everything he had in it. She said she had also sold her own shop too just to ensure he gets his dialysis and sustain his life.

Tears dropped from the eyes of Johnson Uzebbaonuan, the only child of his single mother, Akhare Olochemeuan who is in her end stage kidney disease as she is also suffering from diabetes, heart failure and partial blindness.
Johnson said it is just like the end of his world watching his mother die slowly from the end-stage renal failure, even as he volunteered to donate a kidney to her.

Akhare, 49, an employee of Ikpoba Okha Local Council, Edo State, was diagnosed with kidney disease in April 2018 and has since been on dialysis twice per week due to financial constraint. This is against thrice a week recommended by doctors at the Lagos State University Teaching Hospital (LASUTH).

Due to the lapses in her treatment, she is now in a critical condition that needs urgent medical and financial attention.
Akhare’s only hope for survival is an urgent kidney transplant in India, which would cost N12 million, according to Dr. M.A Amisu of LASUTH. Uzebbaonuan, who spoke to The Guardian, is appealing to kind-hearted Nigerians to save his dying mother, saying he has incurred debts, while trying to sustain her through dialysis, which cost N150, 000 per week.

“I have spent all I have on dialysis, blood transfusion, injections, drugs and hospital bill. I beg Nigerians to please help my mother, I don’t want to lose her this early,” he cried.When The Guardian contacted Akhare, she could barely speak, although it was learnt that she had been unfortunate in her two marriages.

“When I was three months pregnant with my only son, his father drove me out of the house to my fathers’ house where I gave birth to my child. Although my ex-husband remarried immediately he drove me out. I married my second husband who left me and fled when he found out that I had this ailment, “ she sobbed. Akhare who received little help from the council, despite her long years of service is calling for help, as she could no longer endure the suffering.

Mr. Innocent Nnorom has a different story. 40 year- old Innocent, married with two children, is a survivor of CKD. He had a successful kidney transplant with a kidney from his younger brother Chigbo, in 2012. Seven years on, Innocent and Chigbo, who hail from Ihiala in Ihiala Local Government Area (LGA) of Anambra State, are alive to tell the story.Innocent represents thousands of Nigerians with End Stage Kidney Disease (ESKD) and about 54 million Nigerians that have kidney-related diseases such as hypertension and diabetes.

Innocent told The Guardian: “CKD is not a terminal disease.”He enumerated some of the reasons many victims die: “The common person does not have sufficient information about kidney related ailments. There are very few fully equipped hospitals to treat these types of patients. Many people are not able to gather enough funds to get the treatment done.

“Top of the reason why many die of CKD is lack of information. When you or your relative are diagnosed of kidney disease take the right steps and you will get the right treatment.”

The immediate past president of NAN, Dr. Ebun Bamgboye said the fraction of people with kidney failure is little, compared to the number of people living with kidney diseases in Nigeria, adding that the condition does not only gulp huge sums of money for treatment, but also leaves the sufferers constantly tired, in pain and at risk of death.

According to Bamgboye, kidney diseases can be either chronic – a progressive loss of kidney function caused by long standing disease, or acute, an abrupt loss of kidney function within seven days due to reasons such as heart attack, illegal drug use, infections.

The nephrologist said out of the 25 million people with kidney failure in Nigeria, 18, 000 will need dialysis every year, which are about 100 per one million of the country’s population. Bamgboye, who is also the clinical director at St. Nicholas Hospital Lagos, said however, getting this dialysis becomes a big challenge due to the huge cost involved and lack of nephrologists in the country.

“The cost of dialysis is about N30, 000 per session, and the patients need about three session per week which is almost N100, 000 per week and about N400,000 per month,” he maintained.He explained that despite having fewer nephrologists (160) in the country, the dialysis centres are grossly inadequate and found mostly in the urban areas, which cannot cater for the millions having this health problems, which leads to taking them abroad for further treatment.“We have about 149 dialysis centres in Nigeria both private and public. With about 600 dialysis machines for a country with the size of Nigeria, this is grossly inadequate,” Bamgboye noted.

He, however, said there is the need for an increase in awareness creation on prevention and management of the kidney disease in order to reduce the burden in the country.

According to the ISN, while national policies and strategies for non- communicable diseases (NCDs) in general are present in many countries, specific policies directed toward screening, prevention and treatment of kidney diseases are often lacking. More than half (53 per cent) of countries that have an overarching NCD strategy in place have no management guidelines or strategy for improving the care of people with CKD (either specifically or within a broader NCD strategy).

What ISN and partners call for: This year, WKD sets out to raise awareness of the high and increasing burden of kidney diseases worldwide and the need for strategies for kidney diseases prevention and management.Kidney Health for Everyone Everywhere calls for universal health coverage (UHC) for prevention and early treatment of kidney disease.

The ultimate goal of a UHC policy is to promote population health by ensuring universal, sustainable and equitable access to essential healthcare of high quality, protecting people from health impoverishment and improving equity in health across socioeconomic groups.

Specifically, WKD calls on everyone to advocate concrete measures in every country to improve kidney care:
*Encourage and adopt healthy lifestyles (access to clean water, exercise, healthy diet, tobacco control. Many types of kidney diseases can be prevented, delayed and / or kept under control when appropriate prevention measures are in place.
*Make screening for kidney diseases a primary healthcare intervention including access to identification tools (example urine and blood tests). Screening of high-risk individuals and early diagnosis and treatment is cost effective to prevent or delay end-stage kidney diseases.
*Ensure kidney patients receive basic health services they need (example blood pressure and cholesterol control, essential medications) to delay disease progression without suffering financial hardship.
*Call for transparent policies governing equitable and sustainable access to advanced health care services (example dialysis and transplantation) and better financial protection (example subsidies) as more resources become available. Breaking down socioeconomic barriers and expanding access to comprehensive services in order to meet the needs of the population is essential to guarantee equitable kidney care and increase quality.

Consultant Nephrologist and Transplant Physician at the Lagos University Teaching Hospital (LUTH), Dr. Toyin Amira, told The Guardian: “One session for dialysis cost between N20,000 to N30,000 and you can imagine someone with kidney failure that needs to do that three times a week. It is a continuous treatment until the individual gets the transplant and even kidney transplant cost about N6.5 million and above, in some centres N10 million. So the best way out is prevention.

“There is no cure to CKD and it is not reversible, what can be referred as cure is transplant which is expensive, and better not to have it.“Acute Kidney Disease (AKD) is someone who was well but because of vomiting and diarrhoea leads to injury to the kidney and in most situation, they recover. It is not a respecter of age but for us in Nigeria it happens to people between 20 and 50 (the economically productive age). In the young children, it is due to some abnormality of the urinary tract as they grow older, other things like infection comes in.”

Amira told The Guardian: “There has been an increase in the number of chronic kidney disease and this is due to an increase in prevalence of hypertension and diabetes especially and some other conditions such as Human Immuno-deficiency Virus (HIV), which have increased the burden of kidney disease in Nigeria.”

What are the major causes of chronic kidney disease?
Amira said: “Yes, the common type 2 diabetes is a lifestyle disease. We are adopting the Western lifestyle by eating a lot of food that is high in fat, energy dense food or drink. Most people no longer exercise and many are getting obese. Obesity predisposes one to hypertension and diabetes, so diabetes is really on the high side in driving the increase in kidney disease.

“Use of herbal medication that we don’t really know its constituents, the manufacturing process not stringent, some contain toxins that are harmful to the body. Abuse of analgesic also increases it.“So basically not eating right, obesity, use of herbal medications, abuses of analgesic are some of the driving forces.” She added: “The use of bleaching creams has also been implicated in CKD because it contains mercury, which damages the kidney.”

Why the focus on women? Epidemiological studies suggest that pre-dialysis CKD is more prevalent in women than in men, and women are more likely than men to be kidney donors, but more men than women receive dialysis or undergo kidney transplantation.To Amira, the focus on women is because there are some diseases that are peculiar to women and from experience some of the women who ended up with kidney failure started with pregnancy.

The consultant nephrologist said there are some women that are not known to be hypertensive but develop blood pressure doing the end time of pregnancy (pre-eclampsia) and the blood pressure never returns to normal.She further explained: “Some problems women face have their root in pregnancy, some develop gestational diabetes and after pregnancy transit to be diabetic, maybe not well managed develop some kidney issues. Some diabetes starts in pregnancy, some women have it and are not diagnosed until pregnancy or they have it when they get pregnant, it flares up and destroys the kidney. So this year looks at the diseases that are peculiar to women and what predisposes them to having kidney disease.

“Urinary tract infection (UTI) is more common in women because of the woman anatomy. Aside from UTIs, there are some pelvic tumour or malignancies in women. We have some that have huge fibroid that sit on the pipe that carry urine from the kidney to the bladder, which causes obstruction and when discovered would have caused kidney damage.

“Some with cancer of the cervix and uterus, which sometimes spreads to involve the kidney.”The nephrologist urged women to be aware of some of these peculiar diseases especially in pregnancy. “Even after delivery there must be regular follow up to ensure that things are okay. Some don’t do it. Like pre-eclampsia can cause acute kidney injury, we see many women referred to LUTH who were not properly managed,” she said.

Amira said women are sensitised that when they are pregnant, they should go for proper antenatal and if any of these disease is discovered, they should be referred to specialist and regular follow up after delivery.She said pre-eclampsia is a type of hypertension that develops in the later part of pregnancy, the woman develops high blood pressure, leg swelling and spill protein in the urine and the blood pressure can go so high that she convulse. “It is very serious and can harm the mother and the baby and lead to foetal loss or maternal death.”

The nephrologist, however, said with good and early antenatal care, “you would see the trend coming, diagnosed early and nipped in the bud. Gestational diabetes is in women who were not known to be diabetic but blood sugar goes up during pregnancy. So they have high blood glucose and if not well managed can lead to loss of the baby because such women usually have very big babies. So women who have big babies should be screened for gestational diabetes and such women later on develop type 2 diabetes.”

On recommendations on how to survive ESKD/CKD, Innocent said: “Start seeing a kidney disease specialist (nephrologist) immediately – time is of essence. Adjust your diet and life style (your nephrologist will guide you). Take your medicines as at when due. Attend clinics.“Report every change you notice in your body to your doctor for prompt check up. If the family can afford kidney transplantation, start planning for that immediately. It is better to do it when the patient is still very strong. Avoid self medications (orthodox and herbal).”

Amira said kidney care at LUTH is very comprehensive. She explained: “We have all it takes to look after patients with kidney disease. We have dialysis machine, transplant facilities and we have done successfully some in the past. We have well trained specialist who are capable of taking care of this patients, we run two kidney clinics weekly so the patients are sure to get good renal care in LUTH. We are well equipped. We have functional and some new machines and offer dialysis to people.

There is no free medical care in Nigeria. It is out of pocket money but unfortunately, anywhere in the world, kidney care is expensive, but the difference is that the government take absolute care of the treatment and takes the burden off the patient by paying for dialysis and transplant but unfortunately we don’t have that arrangement here. It makes it expensive.”

The nephrologist said the WKD is to raise awareness because it is far cheaper to avoid kidney dieses than to manage it. “It is expensive and here that we pay out of our pocket, many cannot afford it while the mortality is high. Prevention is key by adopting healthy lifestyle.”She said most Nigerians do not have a culture of routine medical check up. Amira explained: “The doctor is not there for treating disease but to help individuals maintain good health. Encourage the culture of routine check up.

“It is so cheap with about N3000 you can run urine and blood test, and no one would know whether your kidney are healthy or not. Those with kidney failures must take their drugs and treatment is for life.Innocent added: “When the patient has got kidney transplantation, he/she can still live for as long as God wills. The major challenge is the cost of the immune suppressants that the persons have to continue taking for the rest of their lives. We therefore implore the government and corporate bodies to come to our aid. These medicines should be included in the National Health Insurance Scheme (NHIS) scheme so these patients can always access them. Partner with the hospitals treating these patients to subsidize their treatments.”