Food. Again I’m talking about food (Lunga and Rose)

Rose:

Kidney patients talk about food a lot. It is quite the preoccupation with us. You have to eat even if you don’t feel like it. Even if your appetite is gone and all food tastes metallic because of toxins you can no longer excrete. You have to eat to stay alive. There’s nothing quite as dispiriting as forcing yourself to eat three times a day every day as I did for years. And there is nothing as wonderful as that first taste of lettuce when those toxins are finally cleared.

The renal diet is better than it used to be when I was a kid. It’s a lot less restrictive because we understand more about how the body processes food and what the different types of food actually do. I believe these days you can eat avocado and eggs, for instance.

Food is a life and death issue for us. You have to eat to live, but food can kill us too in so many ways. I am afraid you will hear a fair amount about food from us.

Lunga:

By the way, I was just about to eat when I wrote this. Not my normal routine, but I guess the aromas squeezed creative juices out of me. I like drinking something before I eat. My uncle used to go to the loo before he takes on his supper, my granny prays and my aunt just attacks it like it was going to escape.

She always finishes up first then says she didn’t want to feel filled before it was done and leave the food to dry overnight because she would not eat it. She tells us the same thing every time that her doctor doesn’t recommend this kind of eating and the worst thing about it now is that I have also started eating like she does too. My excuse is that I don’t want the food to go cold before me. The stereotype that has been around for ages in my community is that people who can’t clean up after themselves are the best cooks, but what if she can’t clean up and she still can’t cook?

Now I am addicted to Spar’s pears because they keep them chilled, ideal for passing time waiting for dialysis sisters to say we can come in. I also got myself a 200ml cranberry juice yesterday and drank it just before we went in fast enough for the sisters not to see or I would get such a lecture.

I understand that medicine professionals know about this illness, but until one experiences it first hand, I won’t say they thoroughly know. We long for a drink after a meal and being shouted at because you had been tempted to drink only registers in the brain as “go back and drink more”. I wish I would get through to medical professionals and make them really understand.

Perhaps the fact that they are professionals makes it hard to deal with them because I would sarcastically tell my sister she is not a medical professional and that she knows nothing about renal failure. I do not think I had mentioned the fact that I have a sister. She is a year older than me and is such a great cook. I mean I am a chef, but I know she makes better stew than I do myself.

Or does she? My cousin is pig headed and won’t listen when I tell him not to add lots of salt. We are not fans of each other. All because of food.  How dare he make a harmful thing out of one thing that I love most?

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My transplant turns 26

On 3 October I completed my 26th year with my “new” kidney. I received my transplant when I was 22 and for a few years now I have had my kidney for more than half my life.

Every year I celebrate my anniversary. I know some find this morbid – they see it as celebrating surgery and hospitalisation. But for me it is celebrating life. I am fairly confident that I would not have lasted a second Winter on dialysis because the first one took too much of me and I could feel my body starting to give in. The physical changes were grim, but what scared me the most was not caring about dying anymore. That’s when I realised I was losing my grip on life.

When I was 21 my greatest hope was living long enough to see 22. I genuinely didn’t think that I would. When I got onto dialysis that year things improved until I got bad bronchitis and it took something out of me that I can only describe as losing too much life-force. I just knew then that my days were numbered. The infection cleared up, but the energy didn’t come back.

I missed the first two kidneys that came my way. The first one happened shortly after the deaths of two close family members. My godfather, my youngest uncle, died of complications of asthma at 40 and my grandfather, who was like a father to me and with whom we lived for 10 years, died not long afterwards. The transplant unit deemed us too emotionally affected to manage a transplant too. They were probably right. The second kidney came up when I had bronchitis. I couldn’t accept it because the infection would kill me once I was on antirejection meds.

When Number 3 came up I was infection free. I had the transplant (something I’ll write about later) and, after a rocky start (something else I’ll write about later) I returned to university.

I was fortunate. I had no underlying medical conditions, no complications and a kidney that was evidently largely undamaged. Despite passing blood in my urine for 20 or so years, my kidney function has been normal and steady, likewise my blood pressure. Everything else has gradually improved and settled.

I have managed my condition as carefully as I could, seeing my specialist regularly, always having the blood tests (despite the needles) and always taking my meds. I have stayed away from activities I felt would compromise my renal function. I did everything in my power to ensure I kept my kidney. But, I was nonetheless fortunate too. Because as you learn when you have a dread disease, there are many, many things you can’t control in life.

To survive you need to manage your condition. You need to make good choices consistently. You need good and reliable medical team. You need money and options. You also need what I used to call “things to come back for”. Things that would call to you if you crossed too far over the great divide between life and death and encourage you to come back. And people to love and support you. But you also really need luck. Everyone needs a little bit of luck.

I have been fortunate indeed. And I am truly grateful.

It’s not just gas (by Lunga)

(Rose says, “I don’t miss renal constipation.”)

My community still can’t take a releasing of air in public, even if it would mean you were to die if you did not let off that gas. So my little cousin whom we know is full of mischief let off some from behind a few times in the lounge when the whole family was seating enjoying a conversation. You should have seen the reaction on everybody’s face, as if she had said the name Jesus as a curse word. My cousin Minenhle laughed as usual since he is a guy who takes everything lightly, but no, my granny asked that I fetch her stick and someone was to be beaten. So you can now imagine what would have happened if my little cousin had done the same and there was grandpa instead or the worst scenario, both.

 

I won’t lie, I don’t like a fart either, but I find nothing wrong with a non-smelly let-off of air now and then because I know how it can be awful in the stomach. I hardly drink cold water nowadays because of how easy my stomach blocks. Sometimes I drink cold water and let off cold air. I know it sounds weird, but I do. I have to drink hot water first then my stomach growls and growls then suddenly it releases all that it does not want in the system.

 

The best way I can tell if I had good dialysis is by letting off air just after the session is done then it’s the same thing until the next morning. It’s sometimes smelly, but usually the opposite with my tummy smiling because guess what, it’s gonna deflate to its normal size.

 

I know rich black men pride themselves in their big bellies, but I am not rich, am I? So please let me let off some gas in peace. I will walk away a little because I will feel embarrassed, but if please do not take no offence if I let off in a bus that is in motion. It’s natural and you should shut up if you have never dealt with a week of constipation whereby you are not able to piss, poop or fart.

 

I had to only look at the mouth-watering food visitors brought me when I was first admitted to hospital to get clogged up and my doctor tried everything to unblock the stomach without luck. I remember trying to push in the toilet that I could at least get a little something out only to get cut of breath instead. It was just past afternoon and the corridors of the wards were without a nurse to be seen. I dragged myself to the bed that breathless and went to crash on it. Still gasping for breath something said I should grab a bottle of water and drink a little. While trying to find my mouth I spilt the fluids onto my nose and that’s how I found breath again. Horrified as I was, the damn doctor still found it funny.

Food (by Rose and Lunga)

Rose:

Food is a preoccupation for people in renal failure. The renal diet is … shall we say, challenging. I was on it from the age of 7 until transplant at 22 and I still have food issues. I overeat. I have a particular thing about protein because I was on a protein-restricted diet for years and my dialysis system drained more protein from my dying body than my failing kidneys. I can eat any amount of animal protein in any form. And I would so love to be a vegetarian…

You should know that Lunga has trained as a chef.

Lunga:

I know I love food. I can’t waste food and to tell the truth, I resent people who do. It’s the tastes that run my imagination wild, the texture, the heat on the spices and freshness of a carrot I have just picked out of my grandmother’s beloved garden.

Food. What would I be without food? So I ask myself because it even helps me when I am down. A grated cheese and cucumber sandwich cuddles with me for a few minutes then voila, my spirits are up again.

I don’t know, it could be greed, but whatever it is makes me wanna chew and swallow something. Or at least replace the ugly taste of toxins that build up in my mouth and create a bitterness that is too bad to describe.

I am at Addington Hospital right in front of South Beach in Durban now. Many things have changed, but the fact that I still haven’t got my health by the horns hasn’t. So I am still too weak or too lazy to make lunch for myself at home and bring for dialysis. Luckily there is a feeding scheme here, but I wouldn’t say the food is ideal for my liking. I sometimes just throw the damn sandwich that is said to be healthy into my mouth and shove it down with an apple and a cup of tea. Trust me, it’s harder than I am putting it.

I guess being lazy just doesn’t work because it’s the same thing at home also. They just don’t understand yet how important it is that I should stick to my no salt and less oil diet. So I avoid being a nag by just letting them do what they do even though I have asked many times that they should probably dish for me first before they start putting soups and salty other things such as flavouring stock cubes.

Living with kidney failure has been a living hell. I wish I could speak my mind without hurting someone. I wouldn’t say my case is the worst, but it’s still not ideal. There are diabetic people in this renal failure struggle who can’t eat sweets as much as I do, but still, I am not as good as people living without renal failure. I even joke sometimes and say I would save a lot if I would live on my own because I would never eat as much and one day I will prove that.

So until I can afford a flat closer to hospital and monthly payments on my medical aid, I will live by God’s grace and hope I don’t stumble upon an uncooked lump of soup. My sister Nosipho is cooking tonight. Excellent cook…

A visit to my specialist

Last week I visited my specialist. I see him twice a year for check-ups. Before each visit I email him to ask which bloods I should have. He emails me back with lists like “Let’s do:

FBC, U&E, LIVER FUNCTION, THYROID FUNCTION INCLUDING T3 AND T4”. So I go to the path lab before or after work and do that. That’s about a week before to be sure he’ll get the results on time for my consultation. Because I like to know the results. It’s been nearly 26 years, but I still like to know. Then I can relax for a while.

I still hate needles. But I have had to go for bloods my entire life. My 15-year-old self would be impressed that I now schedule these events myself and subject myself to the needle. I still cannot watch the gruesome process, however. It’s not the blood. Blood fascinates me. It’s the sharp object entering my flesh. I told my blood-drawer about it this last time and he confided in me that he can’t watch people taking his blood either.

After a lifetime of blood tests, by the time I was 15 I had become so phobic about needles that I would cry and cry when I had to have bloods taken. My mother told me that I would need to have them taken all my life so I needed to manage it. So I analysed the process and broke it down into its component stages. Back then I was going every three months and every visit I managed another step in the process. What ruined the last step, where I would have been able to watch my paediatrician actually stick the needle in my arm, was that my paediatrician went on leave for the only time in all the years I went to him. He brought in a locum who had no idea about how to work with children and our small blood vessels. He hurt me so badly that I looked as if my arm had been run over by a car. When I told my paediatrician what had happened he assured me that that man would never come back again.

So now I can watch most of the process and then avert my eyes as they jab in the needle. The path lab is fairly close to my house and the consulting rooms are almost as near, which makes me feel better about it all. Sometimes waiting for the results makes me more anxious, other times less so. This depends on how I am generally feeling and, as I keep my phones on silent and don’t return calls I would probably miss a call about my results if anything important came up.

When I see my specialist I always ask him how the results were and he always says “perfect”. If I am feeling anxious I grill him about what exactly they were so I can decide if they actually were perfect. They have been stable for 22 years now, but things can always change. One time I interrogated him about whether or not he would tell me if something was going wrong. He told me that he would and, although he has never lied to me in the 10 years I have been consulting him, I still didn’t believe him. He is a very patient man. And I am a very persistent patient.

Last week my results were perfect again and I was once again relieved. I have booked my next appointment for March. The receptionist doesn’t have her 2018 diary yet, but I am in there already.

 

Saying goodbye (by Lunga)

Goodbye. I’m not thrilled at all. Goodbye my home that was Inkosi Albert Luthuli Hospital. I had to pray to get to you. Doctors went through very stressful times because I had not been put on the dialysis programme then and I almost died on the bed at King Edward Hospital under the watch of nurses who had not been trained to handle renal failure patients.

I remember I had a friend who would share his Oros with me and in return I would give him some of my fruit. I remember filling this sippy cup I had with it and suckle while lying on my back not knowing I was killing myself faster. I already could not walk and didn’t know why, but the doctors’ face would be so sad when they reached me during morning rounds. I remember the other doctor advising me to drink less. My question was about dehydration and he told me that I had already more than enough fluids in my body. I burst into tears every time I think about how I almost drowned my lungs laying on that hospital bed. Never was I told how bad I had become. I only saw it on the pictures I had taken during that time. I was on the brink of death when I think of it. Thanks to the ambulance that took me to my-no-longer-home where I slept the whole afternoon, woke up to watch a little television at night and went back to sleep when the nurses turned it off I stood up and walked after seven days of haemodialysis.

Goodbye Inkosi Albert Luthuli. Leaving you, I am not thrilled at all. I will miss those renal diet meals that had me excited every time I heard the trolley they loaded them in rolling into the ward and the hot showers I took before dialysis in the morning even though the cleaners would hassle me saying I don’t clean up after myself.

My struggles with you made me cry. I remember it was Christmas Eve when my doctor refused at last minute to discharge me saying she had picked up an infection in my bloods tests that could not be treated outside the hospital. I will miss you Albert Luthuli Hospital.

Please wish me good luck as I journey to Addington Hospital. I fear the location of it and I know it is ancient so there could be some spirits wandering about, but I hear the nurses are sweet and they have also an in-house feeding scheme. That excites me. Goodbye.

How you get used to it (by Lunga)

Every now and again I will invite different voices into my blog.

This is the first such post.

I have a friend named Lunga who is in kidney failure. He’s on haemodialysis and has been waiting for a kidney for some time. Sometimes he can cope with the endless waiting to get his life back. Other times he is overwhelmed by despair. He is unable to leave KwaZulu Natal because he can get medical treatment there that is not available in the Cape, where his support system is and where he grew up.

Also, he is slightly younger than my transplant. He was born three and a half months after I got my kidney.

In the piece below he writes about something I’ve experienced too and have kept quiet about. The realisation that life in hospital can be more enjoyable than life outside.

Lunga reflects:

I don’t like the noise my family makes when they are rejoicing, it sounds like they mean to spite me and it gets to me every time. I often think they mean to say that they would live a very good life if I would vanish from the face of earth. Like I just happen to be a distraction and a nuisance.

So one will often find me in my room sleeping, but I sit on that big bed most of the time and watch the walls asking myself if that is the conclusion of my story. A story that started very bright, interesting only to get boring and bland.  I would not want to read that book either. So if I had a chance to I would tear up those pages and replace them with those where I am at the hospital, ward A2 West, where there are ladies in clean uniforms who have reported for duty just to see to it that I have everything that I would want for in order to be at my healthiest. Where there are guys in the same mindset as me and who also think the world has deserted them.

We would sit in those beds or lay on our backs and just chat about useless stuff just to pass time waiting for breakfast, lunch and supper. The people who serve the meals are never late and we’d already hear the sound of the trolley as they load those trays of food in. I can’t leave out the running water, crisp white gown that we are forced to change every day and HD TV. The bed that can do whatever you want and the liquid soap squeezed out of a bottle smelling like a waterfall and the air conditioning. To tell the truth, I’d rather be in the hospital.