My friend Rik Wells had never been one to complain about being unwell even if you knew he was unwell. He lived in a small suburb called Ivanhoe in Mundelein Illinois USA. I was shocked when I heard that he had been taken to hospital with kidney failure. I knew it had to be serious. Rik had End Stage Renal Disease (ESRD) Secondary to Diabetes type 2. Apparently he had known about his condition for quite some time now, he just chose not to tell me so I wouldn't worry. Soon he became one of the 400,000 other people in the US then on dialysis. For a long time Rik relied on a machine to barely keep him alive. It was not a good experience.
I was itching to do something for my friend Rik 13,000 kilometers away but I didn't know just how, so I sent him an email asking if there was anything I could do to help him. In his reply Rik said Val, you need more help than I do. Please take care of yourself and your family and make sure the kids go to school. He was passionate about education and that is why he made sure that I had an education. I could not stop but wonder if there was anything I could do. I sent an email to Rik's wife Debbie Crouch asking her if there was anything I could do for Rik. She replied, “Val there is nothing you can do but pray. I pressed her more but all she said was, if Rik cannot get a kidney transplant soon, he could die. He is on a waiting list and we don't know when he can get a donor. Can I donate? I asked. She said NO WAY. I was determined to do something so I went to the internet and googled everything about kidney disease, kidney donation and Transplant. I visited kidney doctors (nephrologists) here in Nairobi and they gave me most if not all the information I needed. I emailed Debbie again and told her I wanted to help Rik just this one time.
She said she doubted if that was possible but since I knew from nephrologists here in Nairobi what I needed to know to donate a kidney, I asked Debbie for Rik's Blood group and it turned out to be A+ just like mine and then I took all the other relevant tests. I sent them to her without Rik's knowledge. In all, the tests were done and we were found compatible to an acceptable degree. I spoke to Rik and convinced him to let me travel to the US and donate my kidney for him. He finally agreed and in March 2007 I travelled to the USA and donated my kidney to a gracious friend Rik Wells at Northwestern Memorial Hospital's Kovler Transplant Centre in Chicago under the watchful eye of the famous transplant Surgeon Prof. Joseph Leventhal. This is the best thing I ever did in my life and I am proud of it. I will tell you it's not the easiest thing to do but once you make the decision to save a life and make a difference in another person's life, the calling is even louder and clearer if you imagine yourself in the patient's position. When it's all over you feel so good about it. I am now living a perfectly normal life with one kidney and I can tell you my life is as normal as it can be.
I stayed in the US for three weeks after the transplant wondering if my sacrifice for Rik counted for anything in my life other than the fact that he was now out of danger and I was less one kidney.
While recuperating, I kept wondering what it felt like to suffer from kidney failure back at home in Kenya. With less than twenty nephrologists and very few dialysis units it had to be tough. I sent emails to the few doctors and nurses that I knew in Kenya asking them to tell me a little more about the state of renal care for people with kidney disease back at home. While some were very conservative with this information, others gave it to me freely but I knew I needed to verify this information.
In April of 2007, I came back to Nairobi with my wound not fully healed and started my journey of discovery. I needed information on how many people are known to have kidney disease, how many can access dialysis, how many are on the transplant list etc. I uncovered information that left even the doctors back here in Nairobi shocked. You see, theirs is to diagnose and send the patient for treatment. Where and how the patients find this treatment is entirely the patients' business. I could not blame them because they had no capacity at all to offer treatment but they could only prescribe.
Fast forward, Kenyatta National Hospital in Nairobi, the biggest public referral hospital, queues of sick and weary humanity waiting for treatment that they were unsure would come. This was a common sight. Children, some with uremic frost, others with severely distended tummies and others with general edema all clutching to their parents caregivers and just waiting with hope that they will get their place on the dialysis machine sooner than later. Others without a shilling on them but hoping that someone will sympathize and allow them to dialyze. A pitiful and disturbing sight if you ask me. I could no longer bear this site anymore. I decided I was not going to just stand there and watch. I had to do something quickly. It was my responsibility or so I thought and it has since remained so. My responsibility.
I brought together a couple of patients, doctors and nurses to brainstorm over the issue of access and affordability of dialysis treatment. We resolved to form a pressure group and register. This was the birth of the National Kidney Foundation of Kenya.
The National Kidney Foundation of Kenya is a charity close to my heart. A charity that funds life saving dialysis for those very poor patients who cannot afford even a single session of dialysis not to speak of lab works and medication. A charity that will go out of its way to solicit for funds to help children access dialysis and transplant and improve the lives of those currently at risk of kidney disease. This is even as we know there is no cure, only life prolonging treatment and that there are thousands who wish they could get treatment but they just can't afford it.
For those waiting on dialysis, sometimes for years, life is on hold. And a transplant is their only hope for a 'normal' life. However, a fifth of all donated kidneys are deemed unsuitable for transplant due to damage.
Did you know? That of the people on the transplant waiting list in the Kenya, 90% cannot afford it. That 1 million people in the Kenya suffer from kidney disease but are completely unaware they have it. That 89% of people in Kenya think that kidney disease can be cured – it can't!
That 1 person dies every day waiting for a kidney transplant or dialysis. That Kidney disease can affect anyone at any age. This is the plain hard truth.
I want every kidney to count and especially that of a poor child. Today in Kenya, if your kidney fails and you need dialysis or a transplant, you join a waiting list of close to 8,000 people. Those waiting for a kidney transplant make up 90% of the transplant waiting list. Many of these people will neither get dialysis treatment nor a kidney transplant. There are just not enough viable kidneys available for those needing them and even if there were enough viable kidneys available, many of those needing them won't afford a transplant and they have to struggle to remain on dialysis which they still can't find or fund. Fewer than 300 kidney transplants are carried out each year, and every day, one person dies waiting for a kidney or dialysis. Of the people who are lucky enough to get a kidney, nearly 80% experience problems with it because they can't afford post transplant medication and that could affect the transplant's long-term success.
The National Kidney Foundation of Kenya is the largest charity in Kenya dedicated to funding treatment for kidney disease and accelerating well-being. Last year alone, amidst lots of sacrifices the National Kidney Foundation of Kenya was able to fund nearly 70 patients on dialysis and 3 transplants thanks to the generosity of our supporters. But each day of each week we have to turn away needy cases that we should be supporting due to lack of funding. Its hurts more when you have to turn a helpless child because you don't have the funds to help her access dialysis.
I know there are still heroes and heroines with a golden heart out there. A child needs that life saving dialysis and you could just be the key to saving a life. Be the first to say “YES I WILL SUPPORT A CHILD NEEDING TRANSPLANT IN KENYA or I WILL HELP A CHILD WITH DIALYSIS
Rally behind the National Kidney Foundation of Kenya to bring this support to those who need it most.
I am counting on you.