“Believing” By Lunga Njikazi. Edited By Rose Richards

Is it foolish to believe? Not only to believe, but believe in something that you know won’t happen without a willing donor and hours of tests and surgeries? I find myself with my face in the pillow many times because believing has been letting me down once again.

Recently I have been strongly believing that my kidneys would by a miracle start filtering fluids that are in my body again and that believing has even reflected in dreams. I sometimes dream I am taking a long piss. The sound of it hitting the floor, the feeling of relief because the weight is being taken off and just the thrill of it after years of dialysis. One would undermine how precious it is to stand before a urinal and take a leak.

Being in renal failure has led me to believing in kidneys more than everything. The magic that is a fist-small organ that many can’t even locate in their own bodies. I sometimes wish I could write a whole novel just to explain how vital they are, but I really am short of words. Who else but a renal failure patient who almost died in hospital would better put it in words? You can’t help thinking organ donors are sent from heaven when you know a kidney transplant would transform your life.

I should be in Cape Town working as a chef at a restaurant I could only dream of as an adolescent, but here I am treating a chronic disease that can’t even be controlled by specialist doctors. I was about to take up a chef de partie position at a wine estate restaurant when I got sick. I had not even finished half a year when I started getting the symptoms and had to drop everything and go back to Durban. Only for my health to even get worse because I couldn’t find or afford a proper doctor who’d diagnose me. So I was referred to a traditional doctor and, because I believe a lot, I took the ugly herbs. These herbs’ purpose was not even explained properly nor was the safe and effective dosage.

Believing.

Now I believe that Discovery Health is going to part the dialysis waters for me and I may walk right to the other side one day. I believe God is going to intervene and with that intervention come fulfilment and I shall get back on the horse and ride to the sunset as I intend, but what I should also do is believe in patience.

Believe.

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“Medication. A wish granted” By Lunga Njikazi. Edited By Rose Richards. And added to by Rose too.

My grandmother. I miss my grandmother like she passed away yesterday. I miss everything about her, from days of happiness which she was the source of, to days of sickness when she would take me to the best doctor in town with her medical aid. As result, I am sure I have been on more than three medical aid providers because she insisted on finding one properly tailored for her. So I would come back from town that day with medication and snacks. Would go to sleep sick that evening then wake up ready to run through a wall the next morning.

For a while I kept wondering how on earth that was happening until I realised it was the medication. How did I miss it in the first place? My grandmother would be sick too and she took meds. Medication must have superpowers, I thought, because one person I know who takes them is my granny and she is everyone’s pillar of strength. I should live on this too. Keep taking medication. I swear I was ready to unintentionally commit suicide by an overdose and leaving no note. How I idolised medication. I ended up thinking it was a fabulous life living on meds and so I took that medication life upon me.

Ask me about being careful of what you wish for. Such things led me to realising that some way somehow I must have a higher calling because all of my wishes are granted, like this medication life I am living now. Living with a condition that has you going on and off certain meds. At first I was on two hypertension pills then they grew to four and next thing I knew I was on six. How did we get so far, Dr Azor would ask with a facial expression that showed she was fuming with anger. Can’t say I blame her. I can be quite a handful sometimes, but just sink into the chair like I did. Wouldn’t stomp out the small office because I needed that prescription she was compiling and simply because I was taught better. So I waited in silence and eventually broke into another conversation again. Typical me who can’t keep his mouth shut.

I liked Dr Azor. I guess that’s one of the few things being on medication I love, sitting and chatting to her while taking in those gestures that said she was listening, but believes only a few things I say. Like the fact that being on medication came as a wish to me. One would wonder how I wished for such a sad lifestyle where you must drop everything when the alarm clock rings and the phone screen says it’s time for meds when you check it.

I will write even more of this entry after taking my day’s medication and giving in to the drowsiness the handful of different shaped pills will give me.

Rose adds:

I’ve taken medication for kidney disease since I was seven. That’s 41 years now. I’ve been responsible my own meds since I was nine. For me it’s like eating breakfast or brushing my teeth – simply part of my daily routine. Except the consequences of missing meds are far worse that skipping teeth brushing.

I think that in the 26 years I’ve had my transplant I have only missed two doses, once due to being very ill and the other due to a weird schedule change. I haven’t even missed doses when flying through different time zones, although it was more difficult working out when to take the meds. I don’t take mine on a clock schedule, but as part of my natural rhythm. So I wake in the morning, get breakfast ready and sort out my meds, which I take on a full stomach. In the evening I take my meds after supper, usually immediately before bedtime. So it doesn’t matter when I have breakfast or supper or whether mu=y schedule changes – the meds will be taken after that.

In my case being made responsible for my meds from an early age made me more systematic about taking them. When I was nine, we had a family crisis that led to my being looked after by my grandparents for several months while my mother was ill in hospital. My mother wasn’t able to monitor my meds and my grandmother was half blind from glaucoma and worried about my mother, so I made sure I took additional worry off her and managed my medical condition. All these years later doing that is second nature.

 

Independent. By Lunga Njikazi. Edited by Rose Richards.

I am actually glad I got my uncle to stop taking me to hospital because even though the first four months were difficult, I would be probably long gone or would be fighting for my life motionless in a high-care. The only thing that was great about it was being transported back and forth and that is all. Everything else was harmful to both my health and happiness. From being controlled on what to do to what eat, I could not even eat a little of something because it was harmful like I don’t know how much of it I am allowed. It was also fine until he started complaining about petrol money and everything he could think of. That’s how awful it is growing up without a parent. You become everyone’s burden. I am glad I got him to stop because even though he would nag me to stop taking too much fluid, I still got him to buy me a 440 ml ginger ale on the way back from the hospital. Bear in mind that I was supposed to take 500 ml in total per day. The day would be so hot and my throat would be longing for something ice cold and once the drink hit the back of my tongue, I could not stop drinking until the contents were done, but the scorching sun still made me so thirsty that I would be looking for something else to drink like I had just walked through a desert when I got home. I literally drank more and more because I didn’t know the struggles of having to take myself to hospital. I would gasp until I thought my breath was going to cut, but I was spoilt by the fact that I was being rather chauffeured to hospital.

My legs were so swollen that people selling traditional herbs would even literally stop and beg me to try their herbs and some even went on to say I had been bewitched and that I should go and see them where they practised their craft. I remember this other lady even gave me her WhatsApp number claiming that she was a traditional healer and that she wanted to help. I had to make it clear that I was open to trying her ways because I was sick after all and needed help of some sort, but I would not take or ingest any herb. That was the last text I sent to her. She never replied.

Gone was the hope of being healed without herbs or western medicine. What I know is that the lady was not gonna help me free of charge or even though she would not charge me if I was lucky, she still was going to expect me to tell the world that she like my Moses who single-handedly parted the Red Sea for me. That is what con artists want, to be praised like they are the answer to everything. Who would not want to be after all? I am sure even the dialysis machines love the idea of us depending on them, but I have a problem with people who mislead others who are desperate, all in the name of making profit. I mean, I could not take 20 steps without stopping to catch breath, but I knew my problem lay in my fluid intake and I was still open to trying something else if it was sold to me in a very good way. I can’t say I am not glad that I didn’t encounter such a con artist.

“My idea of cool changed” By Lunga Njikazi. Edited by Rose Richards

Even though I never got to experiment with any of them, I grew up thinking being cool had to do with smoking, drinking and being out of control. I am actually glad the coward in me wouldn’t rise to the occasion when I saw my peers indulging in such behaviour, because I would have had an even rougher up-bringing. Born in Durban and raised by a rather single parent, I was blessed with a warm-hearted grandmother who took me took me to stay with her and made sure I wanted for nothing. I was on medical aid and went to a good school, but everything came to an end. My grandmother was no longer financially fit to send me to a good high school. So she sent me to her sister who foster-parented me after my mother passed away after a good fight with meningitis.

I soon felt like a burden and doing stupid things wasn’t really ideal. So I spent most of my adolescent days in the local library perusing books and trying to find something that would keep me out of troubling streets because I was not into sports either. So reading was the only hobby I could fall back into when I was blue or just lonely. Reading made me speak in a certain way and understand things a little differently compared with a kid of my age in the same township living under the same conditions. I couldn’t and wouldn’t corrupt my mind even further and before I knew it, I was in tertiary education and had to focus even more on my studies because there was a lot of money at stake. Bear in mind that my great aunt who foster-parented me was a domestic worker and making ends meet was very difficult.

Even when going to chef school, which was my second college, I put all those ideas of being cool on hold just so that I could get my cookery distinction first. Chef Dixie, who was my principal at the school that I went to, spoke about how smoking kills taste buds that are vital for a good chef and guess what? Smoking got scratched off my bucket list too. Rather focus on a pursuit of a different kind of coolness. That is what I call cool things I still wanna do. I will never give up on my dream of travelling the world; that will never be scratched off my bucket list, getting married also and starting a foundation that will help struggling families will always be one something I wish to do before I leave this face of earth.

One would swear I have a death wish as I often speak of passing away, but the truth is that I don’t want my people to be surprised and broken when it happens. I actually gave up my pursuit of cool (which by this time only came down to drinking) because I wanted to live a much healthier lifestyle. I realised there’s many to see and to do in life. I know a friend of mine whose sister died blind. My friend called me after seeing me on a publication pleading for a kidney donation. She said she would give me a kidney because she knows how it is to live unable to do some things. That is the kind of people I live for. People who want to keep me alive.

To hell with being cool.

 

Note by Rose: Maybe it turned out for the best. Had Lunga drank and smoked or lived precariously, he would not be considered a good transplant candidate.

Reflections on Lunga’s birthday, 21 December 2017

Today, Lunga Njikazi turns 26. He is more than three months younger than my transplant. He was born when I was at bed rest with a virus I picked up post transplant. I probably caught it from my kidney. I just had no immunity after three rejection episodes and all the antirejection medication I had to take to suppress them.

By the time I was the age he is now, I had had my transplant for three and a half years, the amount of time he has been on dialysis. I was learning how to be healthy, while he is learning how to manage a chronic illness.

We grew up in different generations and across the country from each other, and yet we are connected by kidney disease. We are part of an extended family across the country and across the globe. Our family’s family resemblance becomes more apparent after transplant. We all look much alike after years on immunosuppressants. They alter the shape of your face and change your eyebrows.

For some of us, the transplant anniversary is a second birthday. So in some ways of thinking I am only 26 years old and he is not yet born. In other ways we were born in the same year.

More to the point today, Lunga has survived another year. He is 26 years old against the odds. I wish him health and long life. May the year ahead bring him strength, optimism and a new start. He deserves it. He has survived so much and come so far.

When I was awaiting transplant, 26 seemed like a distant prospect, an age I could barely hope to attain, that I feared I would never reach due to my illness. Now it seems a distant prospect too – so young, so new, so needing of a future. May he have that future and the life he has fought so valiantly for.

“Why regret?” By Lunga Njikazi. Edited by Rose Richards.

I have grown into a full grown man right now, and I am turning 26 years full of life in less than a month as result. I am supposed to have been living by myself right now or with my girlfriend. Probably raising our firstborn like my uncle and his fiancée are. We grew up as brothers as we shared clothing sleeping crammed in a hostel room. He had to wait until everyone was asleep before he could lay his sponge and get a rest. Good old days that were not so good, but I am sure God does no regret putting us through all that. After all, it has kept us humble and appreciating.

I should have stayed on Cape Town and take up that cosy position of chef de partie in that posh restaurant, but I got jumpy instead and did exactly what renal failure wanted me to do and that is leave my life for the unknown. I regret doing that, but at the same time I don’t sometimes; God put me to and I am quite sure he will see me through. As far as renal failure has brought me a life of limits, it has indeed given me a purpose. I have the power to influence positivity now and with power comes a responsibility that is saving lives.

I felt like a burden when my uncle would drive me to hospital. The poor guy would even go out of his way to send his friend to pick me up. So I decided to go by myself. It is not very easy as I sometimes stumble out of the hospital dizzy after a four hour long dialysis session that I could just collapse and for that reason I am often asked why I don’t ask someone to come with me, but I don’t and I never intend to. Do I regret those decisions? No. I don’t have the money for transporting that person after all and I can’t expect another person to put his life on hold just to hold my hand to hospital.

They say the phosphate that is building up in my system will semi-cripple me later in the near future. They say my bones will be fragile and I will need more than crutches to get to hospital, but I still will walk this path alone. And again I do not see myself regretting that decision.

“The stress that is money. Being independent” By Lunga Njikazi. Edited By Rose Richards

I don’t like money, perhaps that is why I hardly have any and to tell the truth, I would not want for any if it was not a lifeline. Ever since the early days of my renal failure life it has become a need. A little later it became a source of amusement and now, it’s just a stressing subject. Three years after I was laying on my back in a hospital bed wishing I had money to buy my way into a dialysis facility as soon as possible here I am hoping I would find a source of income to take myself to that dialysis facility.

Three times a week, four hours a day on that machine. A very good clearance of those toxins my body can’t get rid of anymore and I appreciate the doctor who prescribed it for me because there are people out there who must pay two thousand rand for each session when I get it free of charge, with a sandwich, a piping hot cup of tea (black and with very little sugar just how I like it) and a cold apple crispy fresh out of the fridge. Quite nice, right? But the stress begins when I exit the hospital.

Can I imagine what life was like before money was invented? No. I mean, can you imagine signing up that Discovery Health should come to your homestead and take a sheep at every end of the month? I feel like that about medical aid, but sadly it’s a fight I will never take up. I wish to move to Cape Town when this medical aid starts to cover the renal failure I live with. So for this reason I must take whatever my medical aid providers throw at me. Back in the day when money was still to be invented the debit orders scooping out that little I have in my bank would feel like a whole cow has been pulled out my kraal while I was sleeping.

Luckily we are no longer in the stone age and medicine is more advanced, meaning more life for people like me living with such life threatening conditions, but the stress that comes with paying for it is unbearable. So I ask for money from people I call angels when I am stranded because the stress that is money runs the world and now I have come to realise that my world is run by stress.

Rose adds: Even 26 years after my transplant, I am unadventurous about employment and travel because of my condition. I can’t afford to be without medical aid or stranded in a place where I can’t get medical assistance that understands transplantation.