So here I am in down town Nairobi, sitting in a restaurant, discussing how we can revamp a social media campaign for one of my good friends Martin. We tried last year, though our friends, to launch a campaign to raise 2.5 million Ksh for him to get a transplant; however, the campaign only managed to raise 80,000 Ksh. We, the team behind the efforts, devastated, frustrated, and honestly not sure what to do, wallow in silence as we pray something changes the situation around for the young man who is currently on dialysis.
The discussions started off well as we cordially introduced ourselves to each other. The two influencers, people who have helped in other campaigns and know the intricate details of a complex social media health campaign to raise money for an individual, were receptive and attentive. As we open up about Chronic Kidney Disease (CKD), there is always this sense of awe, especially when the dialysis stories begin.
‘The Catheter to facilitate dialysis is placed when you’re awake.’ Martin explained the standard procedure needed to access the patient’s blood for dialysis.
Eyes widen around the table as Martin grabs the catheter that is poking out at the base of his collar bone. We explain how it isn’t ideal for a patient to remain with a catheter because of infections. Ideally you need a fistula; I proudly show mine that still has a ‘thrill’, indicating it is working. At this point, they are paying attention to every word we say. We end our narrative by informing them that dialysis isn’t sustainable for a young person; it consumes their time mercilessly, and they feel exhausted most of the time between.
Feeling we had covered the crucial elements of Chronic Kidney Disease, we sit back and allow them to react. Initial questions tend to be on diet, especially what Kidney patients can and cannot eat. This usually comes in waves as the person realizes how important kidneys are. Misconceptions they had in mind follow. We are asked if we used to drink excessively or smoke. I’ve heard this question so many times; I purposely refuse to let it vex me. I know many people who abuse these substances for years and do not have chronic kidney disease.
The leading causes of Chronic Kidney Disease are Hypertension, Diabetes and Glomerulonephritis.
Some people are predisposed to these conditions, i.e. they have hypertension in their families, and some get these conditions because of lifestyle choices. Whatever the case that led to Chronic Kidney Disease, once a patient has kidney failure, we should focus on rehabilitation.
After the question and answer session (which I’ve seen is necessary if the person is not familiar with Kidney disease) the influencers start responding with how they can help. I move to the edge of my seat in anticipation.
‘I know so and so.. Maybe they would be interested in such a project.’ I slide back into my chair.
‘We need to make videos and post on every social media site we can. Get big enough influencers and keep the campaign visible long enough to keep people talking about it.’ I liked the advice, it was true, we didn’t have big enough influencers the first time round, and maybe that’s why it didn’t take off.
‘Who else can we bring in?’ They continued to brainstorm.
I started thinking of how many people are in this situation right now. Apart from Martin, I know three other campaigns that are running out of steam and subsequently hope.
Can I watch them debate how to help one patient while the others remain on dialysis?
I politely interject and suggest we push an organization that deals with transplants. I founded an organization for this purpose, and it would make sense to get it off the ground to create a ‘highway’ for people who need transplants. They agree with me but feel the risk is significantly higher than trying to help one individual. Their conversations continue on who they know and how we can utilize their networks to help him. I don’t mind helping Martin, it’s hard to see a 22 year-old on dialysis, more so, for three years. But, I also know how medical campaigns go. The general public is mostly unaware of the expensive drugs that follow us as transplant recipients the rest of our lives. We easily spend over 200,000 Ksh on drugs in a year, and that doesn’t include doctor visits and laboratory tests.
So I leaned back on my seat, watching as they planned how to help Martin. I continued thinking of the rest, Martin included; If we plan to help many, Martin would definitely be included. Terrified, I objectively watched. In a world where thousands of men, women and children are falling to their death because of kidney disease, creating a platform for one seems shortsighted. Talking to them made me realize that most people help to feel better about themselves, not to solve the problem. They need people going through difficult times to be the proverbial knight in shining armor; it makes people feel good. This reality is dark, and like the night which it imitates, it makes their stars twinkle brightly.
Can many twinkling stars compete with the Sun?
We need a huge platform, one that can support the 400,000 Kenyans with End Stage Renal Disease. Helping one doesn’t change the system for the 399,999 others who need just as much help. This is where I have been focusing, on a platform. We all need to focus on a health-care system that can support us and give us the best standard of living possible; only then shall we be able to contribute fully to our society. Until then, Kidney patients continue fighting in an arena full of vicious animals. Many claim they want to help, with ulterior-motives as claws, and hope-illusions as jaws.