‘My Encounter With Renal Failure; How I Survived’
RENAL disease is one of the most expensive ailments in human history and one doubts if there can still be another that could sink even a king into penury.
Yet, experts said renal or kidney disease has no reversal once it sets in. In fact, at the final stage of progression known as End Stage Renal Disease (ESRD), renal patients are at the mercy of life-long haemodialysis or kidney transplant and post-transplant management. Though patients can live on borrowed time, but it costs in millions.
For many in the third-world countries that are worst hit by the disease, sustaining the cost of dialysis or under-going transplantation is a huge challenge, and much more tougher challenge lurks in the post-transplant stage.
Amid the staggering statistics of kidney disease incidences in Nigeria, where majority of the population actually lives on less-than-a-dollar-a-day; Nephrologists in the country, led by Emeritus Professor, Oladapo Akinkugbe, recently raised the need for national support and policy to aid the plight of many kidney patients in Nigeria.
Apparently on the same page with the nephrologists, Yejide Ajakaiye, an ESRD survivor and Lagos-based lawyer; however stressed that the disease is devastating and urgently in need of more awareness and public support. She added that gathering an immediate humanitarian support group is pre-cursor to having a national policy, as is the case in other advanced countries.
She looked back at the last six years when hers started like a rude joke. The initial diagnosis read malaria, typhoid and ’emotional abandonment;’ but she came down with Systemic Lupus Erythematosus (SLE), kidney rupture, Lupus Nephritis, acute renal failure and severe complications, in quick succession.
When disaster strikes, there is a time of shock and grief, a time for tears, time for grim determination to be a survivor and a time for action afterwards. Ajakaiye has seen it all with kidney disease and now wants a kidney foundation that is patients-focused in Nigeria; in the class of the American Kidney Fund (AKF) — a national non-profit organization providing treatment-related financial assistance to one out of every five dialysis patients each year in the United States.
Chronic Kidney Disease (CKD) and causes
Chronic kidney disease (CKD) — also known as chronic renal disease — is a progressive loss of renal function over a period of months or years. The symptoms of worsening kidney function are unspecific, and might include feeling generally unwell and experiencing a reduced appetite.
Often, CKD is diagnosed as a result of screening of people known to be at risk of kidney problems, such as those with high blood pressure or diabetes and those with a blood relative with chronic kidney disease.
Recent professional guidelines classified the severity of chronic kidney disease in five stages, with stage one being the mildest and usually causing few symptoms and stage five being a severe illness with poor life expectancy if inadequately treated. Stage five CKD is also called established chronic kidney disease and is synonymous with the terms like ESRD, chronic kidney failure (CKF) or chronic renal failure (CRF).
The most common causes of CKD are diabetic nephropathy, hypertension (responsible for up to two-thirds of the cases) and glomerulonephritis. Nephrologist at St Nicholas Hospital, Lagos, Dr. Ebun Bamgboye, said the common causes of CKD include inflammatory diseases of the kidney, infections, obstruction in the urinary tract and inherited disorder like polycystic kidney disease. But in both developed and developing nations, diabetes and hypertension are becoming the most common causes of CKD, especially in older people.
Diabetes happens when blood sugar is too high, causing damage to many organs in the body, including the kidneys and heart, as well as blood vessels, nerves and eyes.
High blood pressure, or hypertension on the other hand, occurs when the pressure of the blood against the walls of the blood vessels increases. If uncontrolled, or poorly controlled, high blood pressure can be a leading cause of heart attacks, strokes and chronic kidney disease. Experts also note that CKD can also cause high blood pressure.
Glomerulonephritis is a group of diseases that cause inflammation and damage the kidney’s filtering units. The secondary glomerular disease also includes lupus nephritis. These disorders are the third most common type of kidney disease.
Bamgboye stressed that once anything happens to the kidney like CKD, it affects the whole parts of the body and it is irreversibly progressive. He said: “Once the process has started, there is nothing that can be done to bring it back to normal; you can slow-down progression, in fact in few instances, you can arrest it but inexorably, it is progressive until the person ends up in ESRD, which is when the kidney is down to about 15 per cent of function.”
How it started for Ajakaiye
Ajakaiye was diagnosed for SLE in November 2004 at the Lagos University Hospital (LUTH), after treatments of malaria, typhoid and even a diagnosis by qualified herbal therapist says she was “suffering from ’emotional abandonment’! As my husband had been away for two months, on a post-graduate programme in Ghana.”
Considering the specialist’s attention in the treatment of SLE and the challenges of medical facilities in the country, she was flown to London February 2005, in search of a more reliable medical attention. But the journey brought a fresh trouble on-board.
“On arriving in London, stress of the journey had affected my breathing. Within 24 hours I was hyperventilating and had to be rushed to the emergency of Guys & Thomas’ Hospital. I came out of critical care unit after about a week of stay.”
Biopsy shows the nature of the kidney and SLE, but the kidney soon ruptured, oozing blood into the stomach. To make bearable the pains that ensued, she was given morphine at every five minutes interval prior to left nephrocatomy surgery to remove the ruptured kidney.
“The surgery took two days. Two ribs were taken out of my left side and I was given 67 stitches across my stomach… after the left kidney was removed. I woke up from the operation six days after.”
Soon afterwards, it was discovered that SLE had also affected the other kidney, in what the medical diction would call ‘Lupus Nephritis’ and ultimately, acute renal failure. She henceforth depended on the dialysis machine thrice a week to clean and detoxify her system.
As if that was not enough, Ajakaiye further said: “The post operative recovery was very slow, somewhere along the line my blood pressure went up to 290/150. I had an electric seizure in my brain and I went into coma for 19 days. Having come out of coma, I also suffered paralysis from neck down; my throat collapsed and was being fed through the nose. I was in that state for the next eight weeks before I could recover any form of movement.”
Experts described Systemic Lupus Erythematosus (SLE) or lupus, as a chronic autoimmune connective tissue disease that can affect any part of the body. As occurs in other autoimmune diseases, the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage.
SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. The disease occurs nine times more often in women than in men, especially between the ages of 15 and 50, and is more common in those of non-European descent.
SLE causes inflammation of the kidney, known as Lupus nephritis, a disease of the immune system. Sufferers of lupus nephritis may or may not have symptoms of kidney disease, but it can manifest itself through weight gain, high blood pressure, darker foamy urine or swelling around the eyes, legs, ankles or fingers.
One in five Nigerians have chronic kidney disease
Causes of kidney diseases are quite a hand-full and statistics shows that the worldwide problem has about seven per cent annual increase, much more than the rate at which the world population is growing. About 2.5 million people have ended up in stage five (ESRD), and require one form of support or the other.
It is also estimated that about 100 per million would join that number every single year in any community; and the global prevalent is about 340 per million. Majority of the patients are on haemodialysis but about half a million people are living with kidney transplant world over.
Bamgboye observed that a study conducted in America, shows that 11 per cent of the population have one stage of chronic disease or the other. “What is more frightening is that the first three stages have about three to four per cent. Most of the patients that go through it never end up in ESRD, because majority of kidney patients actually died before getting to stage five CKD.
“This is more frightening than the 11 per cent as they die of stroke, heart attack and heart failure, which accounts for the need to detect kidney patients at early stages,” Bamgboye said.
An estimate shows that one in five Nigerians (about 18 per cent) have chronic kidney disease, leading to kidney failure. The country has one of the highest new cases in the world, put at about 14, 000 annually. Experts however said there are only about 50 dialysis units in the country, currently used by less than a thousand patients. Implication is that, 13,000 people at the very least are dying of kidney disease, either because of inadequate care, absence to such unit or inability to access treatment.
This is considered to very poor, compare to what is the case in other countries. For instance, the United States with about 1, 500 dialysis units is providing care for 1000 per million; in Nigeria it is less than 10 per million. Number of transplantation minimum per year is about 40 in the US, while it is less than one in Nigeria.
Transplant and post-transplant experience
With acute renal failure or ESRD, the choice of sustaining life is limited to haemodialysis or transplantation. Haemodialysis or dialysis is a method for removing waste products such as creatinine and urea, as well as free water from the blood when the kidneys are in renal failure. This is done twice or thrice a week. Dialysis or “kidney machine” is primarily used to provide an artificial replacement for lost kidney function in people with renal failure.
Bamboye’s colleague and Head of St. Nicholas transplant unit, Dr. Ayo Shonibare, added that, though transplantation is expensive, kidney dialysis is in the long run more expensive, painful for the patients and usually not sustainable.
He said that a comparison of patients, who remained on dialysis and those who had transplant over a period of five years, shows that the risk of mortality is higher in the former than the latter. “By doing a transplant, you improve your chance of survival; and the earlier you do it, the better, as the chance of the graft surviving is best with shorter time spent on dialysis.”
Ajakaiye went the transplant way in India, and had stem cell kidney transplant. After four month in India, she returned home “very thin but happy to be alive.”
She recounted the post-transplant period saying: “The post transplant drugs gave me a serious side-effect in diabetes mellitus. As we speak, I still inject two types of insulin twice a day; monitoring my blood sugar religiously. The diabetes gave me matured cataracts on both eyes. I had to go back to India four months after the transplant for a drug review and surgery in my left eye.
“After the surgery, it was discovered that hypertension resulting from the renal failure had damaged my retina, so, do not have a central vision in my left eye. I had to wait for another eight months before going back for surgery in the right eye.”
She observed that statistics of survival after transplant is also alarming. Records shows that only one in three survive, due to lack of proper and regular use of immunosuppressive drugs; as post-transplant recipients are on drugs for life.
“The post transplant drugs are very expensive and a lot of people cannot afford them. The truth is that, if you do not take your drugs, the kidney shuts down and you die! Most times, a kidney transplant is not for life, except it is stem-cell transplantation and that is even dicey. Recipients could suffer rejection of that kidney and back to square one.”
Cost of CKD treatment
Cost of treatment in CKD is slightly relative, but runs into millions of naira. Renal Replacement Therapy (RRT) of dialysis cost about N5 million annually and a kidney-transplant comes at about N4million, while annual lifelong post-transplant care costs N2 million.
Ajakaiye reminisced: “Talking about money, I was in and out of intensive care at the London hospital and a care-cost then was 2,160 pounds (about N486, 000). Had dialysis at 300 pounds (about N67, 500) per session, for about six months at the London Hospital…
“I continued dialysis at the rate of N28, 000 per session, three sessions a week for another eight months at St. Nicholas. Anyway, Guys Hospital gave me a bill of 60,000 pounds (about N13.5million), which I am still paying on instalment. Going to India over and over, my friends offered financial assistance and everything sets me back to about N7.5 million.
“Funding is a major factor in the survival quest. CKD is a very expensive disease. Moreover, kidney transplantation is not a cure, it is just an extension of time because the recipients still have to maintain and manage the transplant. I did stem cell, the technology is such that I am like the clone of the donor so I use less drugs. The cost of maintenance for me is between five to six thousand dollars a year (about N808, 500). But it is still very expensive.”
Renal Care Transplant Foundation Access Centre
As I looked back at my experience and the challenge I faced, I found a lot of loop-holes in the areas of information and assistance. The renal centre is designed to assist with information, counselling, on renal failure and show a road map of how to get kidney transplant, more particularly stem-cell transplant. But, most importantly the focus is on post-transplant management and care.”
The Renal Care and Transplant Access Centre is a registered Non Governmental Organization. Main objective is to provide information, counselling, support and service to renal patients and people with all kinds of kidney related problems.
Ajakaiye observed that there are lots of problems that attend the post-transplant era and can well be managed with adequate information. She said: “Post-transplant is like a different ball game, the immunosuppressive drugs have a lot of side effects… The diabetes gave me cataract and I went partially blind. Some of the drugs will give you insomnia, ear-luck, constant diarrhoea etc. You are seeing these symptoms but oblivious of what is happening to your body. The centre offers informations to this effect, with counselling and support, drug management, life-style compliance that is quite unique to our environment.”
The mission of the centre is to avail renal patients with care and counselling required in ameliorating the pain and depression often associated with that ailment. The centre runs a support group, which does counselling with the assistance of experienced hands who have been through that route. Emphasis is on post-transplant patients on use of post-transplant immunosuppressive drugs and their side effects through a programme called “what the doctors don’t tell you.”
Ajakaiye further said that kidney problems are prevalent and lots of people die due to lack of funding for the dialysis that is pre-transplant or purchase of immunosuppressive drugs, which is post-transplant.
The centre has therefore started low-key and has so far assisted 29 patients towards getting kidney transplantation and transplant treatment. The goal is to assist between 15 to 20 kidney transplants a year. The cost for a kidney transplant, with the cost of tickets abroad and immunosuppressive drugs for 6 months after transplant, is estimated at N7.5 million. The total being between N122.5 million for 15 patients and N150 million for twenty patients.
“We are also proposing to subsidize dialysis cost. Presently, dialysis cost about N28, 000 per session. Patients require a minimum of two or three sessions per week. Medication costs per dialysis is another N10, 000. Therefore, to stay alive pending the kidney transplantation requires about N480, 000 monthly.
“Our target is to raise N250 million in order to fund or subsidize some, if not all the cost till the kidney transplant is accomplished. To further facilitate the availability of post-transplant drugs and vital immunosuppressive drugs to post-transplant patients at heavily reduced cost.”
On the need for a national policy on renal disease, the lawyer who has been at the bar for 28 years said, such is necessary but must be preceded by individual and public awareness and support. “The truth of the matter is that Rome was not built in a day. For policies to be pushed, there has to be a voice, because laws are made by man and for man.
“So, first and foremost, we must be seen to be doing something that will impact or affect people’s lives. It is that impact on welfare that we would push as a voice that will raise a policy to affect the general welfare.
“That is the focus of the centre. It is for us to be able to assist people in post-transplant situation in order to stay alive. The truth of the matter is that live is sweet and for us to be able savour it; we need a drug compliant life-style. We shall be having the official launching of the centre and N250 million appeal funds on June 22, 2010, at Muson Centre, Lagos. Contact is: Kajola House, 3rd floor, 62/64 Campbell Street, Lagos. Website: renalcaretrust.org”
The centre is designed to replicate the ‘save-our-soul’ responses of national organizations like the American Kidney Fund (AKF), Renal Support Network (RSN) and American Association of Kidney Patients (AAKP), all non-profit, patient-focused organization aimed at improving the health and well-being of CKD patients.
“I found out that one of the situations that leads to SLE is stress, extreme stress. We must take time out to check ourselves monitor our diet and exercise a lot. It is a privilege for me to be of service. On a usual day, I should not have been alive to tell the story. I have been back and forth the death-door like four times. To me, it is like putting something back in appreciation to God, for keeping me life,” Ajakaiye said.