Take that test now, early diagnosis saves lives
Jaob had a kidney transplant in 2017. PHOTO | COURTESY
What you need to know:
- By the time the diagnosis was made, the condition was so advanced, I was immediately put on dialysis.
The doctors couldn't pin point exactly what led to the condition but suspected uncontrolled hypertension since it is one of the most common causes of kidney failure.
“My name is Joab Wako, I am 28. In 2015, I was diagnosed with kidney failure. By the time the diagnosis was made, the condition was so advanced, I was immediately put on dialysis. Kidney disease is a silent killer, few people are aware they have it until it is too late.
In my case, doctors couldn't pin point exactly what led to the condition but suspected uncontrolled hypertension since it is one of the most common causes of kidney failure. I remained on dialysis for a year-and-a-half.
During that period, I continued to work full time as a manufacturing engineer having graduated from Jacksonville State University in the US in 2014. My family played a key role in my recovery because they helped organise for a kidney transplant. Their support was my source of strength during that difficult time.
The recovery process was long and painstaking. It involved, among many other factors, looking for a suitable donor and the hospital to carry out the transplant. I was overwhelmed. I felt that the process could be streamlined and made easier for the patients and the people supporting them. This frustration is what inspired me to register Transplant Education Kenya in 2017 after I had my kidney transplant, which was carried out in India.
As I continued with the dialysis, keen to learn more about the disease and its management, l started researching on organ donation and transplant. This gave me insight on how different countries do it and learnt a lot from those who had undergone the transplant. Using social media, I managed to meet a number of kidney donors and recipients, as well as their relatives and friends.
Meeting them and hearing their stories of perseverance and triumph did two things: it encouraged me and inspired me to form a network of donors and recipients.
Transplant Education Kenya’s vision is to make organ donation and transplantation easily accessible for all Kenyans in need. Currently, only kidney transplant is done in Kenya. Through a partnership with two other organisations, we work with Pathologists Lancet Kenya, which offers services such as vital diagnostic and screen testing, to create a kidney care card with which our members can get kidney tests at a discounted cost. The health provider has laboratories across the country. Registration is free.
Some of the participants during the 6th Renal Walk Awareness event held at Karura Forest in Nairobi last year. PHOTO | COURTESY
When I formed the organisation, most relatives and friends were shocked. They wondered why I would choose to dedicate my time and energy to a not-for-profit organisation over a thriving career.
I was a driven man though, a man keen on saving others from the distress I faced while I sought treatment. Presently, I run the organisation from home on a full-time basis. I am fortunate because my parents support me financially.
Reading up on the disease revealed that it was lack of periodic check-up that led to late diagnosis.
Through my organisation, I encourage people to have a check-up at least twice a year. Every month, together with two volunteers, we organise a walk at Karura Forest in Nairobi to create awareness on kidney failure.
During the event, in which participants pay Sh100, we usually have a nutritionist who educates participants regarding diet, while those who care for patients at home are taught how to best take care of them.
The walk also creates a forum for those who have undergone the transplant to encourage one another and share information since we face many challenges - many young transplant recipients don't have stable jobs because they are considered high risk employees.
Another challenge is the negative perception that some have regarding kidney transplantation. A number of people still think that kidney failure is synonymous to a death sentence. To counter this perception, some recipients prefer to keep it a secret, making it difficult to raise awareness and educate the public. This explains why it has been hard to register a big number of recipients in our database. Currently, we only have a record of 30 kidney recipients.
Money is another big challenge, and many kidney failure patients stay on dialysis to survive instead of seeking transplant. This is largely because the National Health Insurance Fund (NHIF) only covers dialysis expenses and the surgery, but not the medicine used after the transplant.
I have contacted a number of hospitals and organisations, and together, we are working on a program that will ensure that we continue educating the society regarding non-communicable diseases such as diabetes, hypertension, cancer and stroke.
