The Guardian’s story saves man living with younger brother’s kidney
With about 850 million people suffering from chronic kidney disease worldwide, a number which signifies a pandemic, that is twice the number of diabetics and 20 times the number people with cancer or Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome (HIV/AIDS), there is need for urgent collaborative efforts in addressing the disease. Further estimates show that about 14 percent of Nigeria’s population is affected with kidney-related diseases, while 10.5 million people need dialysis or a transplant, but a huge number cannot receive these lifesaving treatments due to the high cost, lack of resources to fund treatment and lack of organ donors.46-year-old Innocent Kenechukwu Nnorom, an ambassador for St Remmy Foundation, shares his seven years experience as a kidney transplant survivor, as well as proposes solutions to assist patients with renal challenges. ADAKU ONYENUCHEYA writes.
*Innocent Nnorom establishes Trust Fund to help people with renal damage
How it all started
Nnorom, 46, is a Lagos based businessman, who holds a Higher National Diploma (HND) in Marketing. He hails from Ihiala in Anambra State and is married with two daughters. His journey from death to life was a nightmare nobody would ever wish to experience.
He narrated: “I became sick just like any other person would be down with sickness in 2011. Initially we thought it was malaria, which was treated with no improvement. After treatment the ailment persisted so the doctor prescribed further tests.
I started noticing difficulty in passing urine, as well as going to the toilet to defecate. I had swollen feet. Whenever I come back from my business and removed my shoes I see my legs swollen. I also felt so tired whenever I wake up in the morning that sometimes I could not go out to work.
One thing led to the other and I had to go for medical checks. Initially we were going to our family doctor at Jakande Estate, Lagos State. It was after treating malaria and the sickness persisted that he had to prescribe further test, which after it was done he had to refer me to the Lagos University Teaching Hospital (LUTH). It was later discovered that my kidneys were bad.
Options for treatment
It was discovered that my kidneys were bad. There was no remedy except for maintenance hemodialysis, which I was on for about 11 months. But then the long-term option was kidney transplantation, which we opted for and we started making efforts to get a donor and then look for funds because it was capital intensive.
The money was not there and we also had to convince people to get someone who would be willing to donate a kidney to me. We used The Guardian as a platform to solicit for funds from the public to finance my treatment. That really went a long way and the whole journey was a success. Ever since then The Guardian has been involved in the follow up.
Challenges in getting kidney donor
I am based here in Lagos, while my younger brother is based in the East. I am the first child of the nine children of my parents. My brother is the second to the last child. When he heard that his elder brother was sick, he rushed down to Lagos and asked if both of us would be fine after the kidney transplant, which I answered him ‘yes’ with all pleasure.
Initially he thought it was something that was going to be done in LUTH, but when he stayed up till three weeks and the transplant was not done, he decided to go home.
When he got home he received some piece of advice from family members and friends, in which he was not willing to proceed with the transplant anymore, but as God could have it, after prayers and family meetings to make some things clear about it, he obliged and did the transplant.
Seven years after kidney transplantation
I am doing well and with God’s help. When you become a success story in any area of life, from time to time you get unsolicited calls from those who are going through what you have gone through.
Presently that is what led to what I am doing now full time, trying to see how my life can touch the lives of others who are going through what I experienced.
Challenges living with kidney disease and having a transplant
One in every 10 persons has one form of renal health challenge. The challenges of living with the disease are enormous because it has its socio-economic implications, which is very overwhelming.
As a kidney transplant survivor, you have to do some adjustment in your occupation, the things you eat and your lifestyle generally. The fact that you had kidney transplantation does not stop your bills from running.
You have to pay your house rent, children’s school fees and other bills. You do not give excuse that you had kidney transplantation.
You are also on medication for the rest of your life. These medications are very expensive, you must take them every 12 hours for your system not to reject the kidney, which is a foreign body to yours.
Humanitarian project to assist patients with kidney disease
We have men and women of like passion coming together through St Remmy Foundation, a non-profit, non-governmental organisation duly established in accordance with the laws of Nigeria to contribute to global efforts of curtailing the excesses of renal challenges.
Although, I am a kidney ambassador to the foundation, what we do is that – presently we run some kidney health awareness campaign and by this campaign we realised that so many people who have similar issues keep calling and we had to start thinking of how we could help out. That is what led to what we are about to do now – taking what we are doing to a higher level.
Already we are telling people what they should know about their kidney, how to keep it healthy and take care of themselves when they become victims of kidney disease.
Perception about NGOs and their scheme for fund raising
In Nigeria when you hear of non-governmental organisation, people think it consist of a group of people whom just give money out freely. When calls of people who have dire need for this kidney issues come in, we cannot just run away from them, hence what informed the launching of this kidney care trust fund, so that we will have something to lay hands on to help people who are in need of treatment.
St. Remmy Foundation was officially flagged off about three years ago in Abuja with the presence of the former Minister of Health, Prof. Isaac Adewole. The foundation is working with the Presidency, Ministry of Health, Lagos State Government, National Health Insurance Scheme, Lagos State University Teaching Hospital, National Orientation Agency, National Youth Service Corps, Lagos State University College of Medicine and the Catholic Community among others to show the credibility of our work.
Our work with people of notable personality shows we are not just about money. Even before launching this, we carried out a project, where we sent a young man for kidney transplant, although in his own case there was nothing, we came in and God helped us to source for funds. Once you have a passion for something, when you see the need, you do not run away, you stand and find a way out of it.
The Kidney Care Trust Fund
We are not actually calling people to come and donate money when we unveil the St. Remmy Foundation Kidney Care Trust Fund on Tuesday, December 17, 2019 in Lagos.
The Trust fund is to enable us finance our health education programmes through the media platforms, open free health screening and camps, sponsoring local and international training programmes for Nephrology nurses and doctors, periodic continuous medical education for medical professionals, support to kidney patients on dialysis and transplant operation, subsidising medical costs for pre/post kidney transplant patients and advocacy campaigns among others.
Advice on lifestyle to help reduce chances of developing kidney disease
We must realise that taking care of our health generally is our individual responsibility and we have to be conscious of it at all times.
We have to get knowledge about our health. Currently, kidney disease is so rampant in our society. People should ask necessary questions to know what they need to about their kidney.
Measures to address kidney disease in patients
Patients with kidney disease really need help. Like most often I tell people that as far as Nigeria is concerned, those affected with Human Immunodeficiency Virus (HIV) stand better chances because once they see their condition and accept it, they submit themselves to the government who take care of them, but if you have kidney disease you are on your own.
Even the National Health Insurance Scheme (NHIS) have no programme for kidney disease patients.
Hence, individuals, corporate bodies and the government should come to the aid of patients suffering from kidney disease because they really need help.
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