Food restrictions are the bane of renal or rather kidney disease patients. This is coupled with the fluid restrictions that gets most of us really upset. Some people flaunt the rules but there are others who realise the importance of applying the rules religiously. Most people flaunt the rules out of frustration because believe me, it’s not easy especially when you’ve been able to eat literally everything.
Initially, you feel you can handle it until you realise that going out to eat has become a chore or really hard. You can no longer eat without thinking about what’s in the food or what’s been used to prepare it. Some people’s restrictions are mild and some others are complicated. The African cuisine is complex, it’s almost like Asian cuisine but slightly better. The Asians might disagree with me on this. I think this goes for all other cultures as well, everyone thinks their cuisine is better than the next person’s.
Now, when the doctors decide that drastic measures need to be applied for health reasons, the first professional brought in is the dietitian. I never knew how serious mine was going to be until I sat with the dietitian that day. She asked me about my daily eating habits; then it dawned on me that I never did take notice of what I ate or their health benefits.
She went through from breakfast to dinner and even snacking in between, then to my fluid intake. It was a thorough examination of all I ate and drank on a daily basis, we never do take these into consideration, do we? Reminiscing about that meeting and subsequent meetings, while writing this, makes me so sad and emotional. There are a lot of things healthy people need to be grateful for, because you never know what you have until you lose it. I used to bawl my eyes out.
When people see you and think you look just fine, they don’t know what you have to go through as a kidney disease patient. We usually just resign ourselves to smiling through gritted teeth because nobody would ever understand. This is a plea to everyone, it’s not fun when someone comes to you, after a gruesome session, to pay you “compliments”. Read here about what not to say to kidney disease patients.
The dialysis machines act as kidneys to remove fluid and toxins from the body because the kidneys are no longer able to perform the job. It does work to keep Renal patients alive and well but the machines can’t do all the work so we have to do our own part. This is where the dietitian, food and fluid restrictions come in.
As an African, my diet restrictions were very specific because most of our foods are phosphate and potassium rich. So for me, the list was endless. I had “Don’t” and “Alternative” sections. It was at this point I realised that the medical team looking after the renal patients are really thorough. They took their time to investigate and test the food and drink each culture ingested on a daily basis. An amazing feat to behold.
As soon as the dietitian started talking about the foods I should avoid, it dawned on me how much work had been put in. The dietitian went into the technicalities of the food and drink restrictions including measurements of my fluid. Fluid used in cooking the meals were also not left out. I had to start measuring any fluid that goes into my mouth. Mind boggling!
Now, as an African, we love our “swallow” (pounded yam or amala, made from powdered dry plaintain). There are different types of swallow; and not eating “swallow” in a week, at a stretch two weeks, is like a death sentence. You feel strange, bereft until you can eat this nation favourite. Some people can become really cranky, this can cause quarrels between a couple. It is a national pastime even for people who live in diaspora. This was one of the foods banned but just the powdered one that is made directly with the powder and hot water.
The only way I could eat pounded yam was if I went back to my roots (bought a mortar and pestle to pound cooked yam to a smooth consistency). Whilst I would have loved this because it’s better especially with old yam, it wasn’t an option. Pounding yam is time consuming and requires a lot of strength to pound the yam to a smooth consistency. I would have to think of an alternative very quickly because I would slowly run mad.
That wasn’t all, my fluid intake was also affected too. Most of our soups are fluid based so how was I to survive this regime I find myself on? The dietitian took some of my favourite soups off my menu like egusi (melon) soup and peanut soup. How was I going to eat my pounded yam alternative now.? I burst into tears. Yes, I was always crying. I cried in the shower, before I went on the machine, before I went out… anything I could do effortlessly previously, triggered a deluge of tears. Nevertheless, despite all these, I was determined to succeed at this.
I’m very good at making the best out of a bad situation, sometimes. This, i believe, got me through most of the dark days. Oh, i can’t forget my Renal psychologist at Salford Royal Foundation Trust (SRFT) formerly Hope Hospital, who had three years benefit of my tears, fears and frustrations. I can never forget my needle phobia too. She was a saint because I was everywhere with my emotions. She really helped me that I was eventually able to put my dialysis needles in my fistula myself. Quite scary too doing that.
Exploring Other Avenues
So I had to look for a way to make these restrictions work for me. I was already a slave to the machine and dialysis, this illness was not going to also make my entire life revolve around it. It was imperative I found a way to make things work for me without compromising the things I enjoyed eating. Mind you, my fluid restrictions had been put in place. My initial fluid restrictions was set at 450ml a day, this included my food and drink. No fruit juice, no fizzy drinks, only water or cordial/squash.
I didn’t like what I was allowed so I stuck to water. The restrictions played havoc on my body. It still gives me the jitters today when I think about that part of my journey. In order to ascertain what restrictions to apply to a patient, they are asked to pass water into a metric can. This tells them how much fluid the kidney is flushing from the body so the patient’s fluid intake is adjusted accordingly. Too little or too much could and can cause problems for the patient even death. Hence all patients are closely monitored.
Home Haemodialysis Process
If you’re a home haemodialysis (HHD) patient, you always have to call after your sessions to give the team, the figures going and coming off the machine. (Read my next blog on starting dialysis at home). Once you become an old hand at identifying when there’s a problem, you take your record book to your hospital appointments. Oh! You also have to send your bloods in once a month for tests, it’s these tests that tell the medical team how you’re doing. After a while, for the conscientious ones, you find you know more about your body and this disease than the medical team.
This is the reason I was able to manage my restrictions like a pro. I mastered my thirst and cravings so well, I was surprised at myself as well as proud like a mother whose son just won an award.
- These are a few of my restrictions:
- Pounded yam/garri/amala,
- Groundnuts/peanuts including soup,
- Mackerel, smoked or boiled;
- Black-eyed Beans;
- Beef partly;
- Palm oil;
- Ugwu/spinach leaves;
- All soups
- Tomatoes partly;
- Offals like shaki, liver, kidney (eww) gizzards, infact all the things we love eating inside the animal;
- Natural Pineapple;
- Coconut etc These are only a few of the restrictions I can fit in here. You can download my Free ebook on Afro-Carribean food restrictions here.
Since I couldn’t have my pounded yam, I had to look at alternatives. I could eat rice. It was one of the staples I could have so I had mashed rice (also known as tuwo shinkafa in Northern Nigeria) with a soup called ogbono made from some seeds that look a bit slimy but it’s really good. Moi moi (bean pie) was okay though but once in about 2 weeks (see menu)
I cut out most leaves from my diet but lettuce, broccoli and caulifower which I could have so that went into my only allowed soup. For same reasons, I had to watch salad as well because one cannot always be sure what restricted vegetables were in the salad.
My friend had invited me to a magazine launch in town, I was all dolled up and looking to enjoy myself that evening. The hotel had asked for dietary requirements and mine was sent in so I didn’t bother eating before I left the house. That day was a particularly trying day because I had been suffering from cramps all day, all over my body.
We arrived there on time despite my holding them up with my cramp crisis. I am sure most people would have guessed why I was having those cramps. I hadn’t drunk my afternoon fluid quota so I was ‘dry‘. Dinner came round and the waiter served what everybody else was having. It was so funny I burst out laughing.
My friend tried to get the waiter to get the alternative meal I had requested; but he didn’t seem like he wanted to go to all that hassle. Eventually, he came back with some sliced fresh peppers, some tasteless, dry chicken, potato chips and some ketchup (hmm, can’t have ketchup). I couldn’t also have any of the drinks on the table so I asked for water. At least I had a great evening with the guests on my table
In order to keep within my food restrictions, I stopped eating out and started making my food at home. If I absolutely had to go out with friends, I could only order off my restriction list but since restaurants know people have dietary restrictions; you could give special instructions. Mine was usually no salt, spinach or mackerel, the menu made it easy to see what was in the food.
As earlier said, I was put on fluid allowance initially of 450ml a day but this was really hard for me. I found the fluid allowance was too low because I started getting cramps all over. It was this period I discovered you could get cramps on your face. Hahaha.
When the facial cramps started, it was like I was having a stroke, I knew it wasn’t a stroke because my face wasn’t numb or felt droopy. It was just excruciating pain that I couldn’t shout or cry. I started laughing, deep belly, mirthful laughter because I looked so funny in the mirror with the cramp moving all over my face. The bane of my life at this time were the constant cramps all over my body, in places no one would ever believe.
Sometimes, I had episodes whilst on dialysis in the hospital so the nurses would have to ease the cramps. They had to take a decision to increase my fluid allowance to 750ml a day including from food as well. This worked well although sometimes, I got overloaded and had to go in.
The first time I had a fluid overload, I couldn’t breath, gasping for breath, my hands, my legs and feet were swollen. I thought I was dying. Waiting till morning was like an eternity, wheezing like someone with asthma. My nurses were amazing especially the ward manager and the nurse who had trained me to needle myself. Without panic, when the ward manager saw me, she immediately said “fluid overload”, asked them to put me straight on the machine and take 4litres off. It was instant relief once the fluid was off.
From then, I had to closely watch my fluid intake and my weight before and after dialysis. As far as I know, there are only two ways to get fluid overload.
- It occurs when the patient ignores their fluid allowance and drink what they like or,
- The machine is not taking off all the fluid from the body.
Fluids build up slowly through the week, then fluid goes everywhere including the lungs hence causing difficulty in breathing. The feeling is like drowning. Our body is made up of mostly tissue so can easily absorb fluids.
Fluid overload can go undetected if you’re dialysing at home. This is how most deaths occur if there’s no close monitoring. As patients, it was our duty to ourselves to monitor our weight gain and/or weight loss.
Cramps occur when you don’t drink enough and also go on the machine for dialysis. More fluid is taken off during, probably because your dry weight is wrong and you take more than is required. Thereby causing your muscles to constrict and/or contract, causing you extreme pain and discomfort. If you are a dialysis patient and have never experienced cramps during, after or on any occasion, be grateful. It is not ‘a walk in the park’.
- To ensure I didn’t become too overloaded, I had a metric jug and filled it up with water to 750ml.
- Breakfast: Mug of tea – 300ml (pour away 300ml from jug)
- Lunch and dinner (flat ice from ice tray) fill only a quarter of all the ice trays with water up to 200ml. Advice is to suck on the cubes but it made me thirstier so I chewed the thin ice. Instant gratification.
- Remaining 200ml – sometimes for my medication or if I wanted some flavoured water whilst out and about. Most times to allow for the fluid in my food since I hardly went out to eat. I always took my medication when eating to avoid going over the stipulated allowance.
Keeping within the restrictions and regular dialysis sessions, at least 3 times a week, will help prolong your life before you get that awesome second chance at life. Don’t give up and keep fighting!
As a Renal patient, I owed it to my children, my husband, my family (parents and siblings), my friends and the people I supported in the community, to keep healthy and well. That thought always ensured I kept fighting, never giving up.
Advice and Support
If you’re in Africa specifically in Nigeria, going through a difficult time right now as a Renal patient, I set up a Facebook group where there is support and advice readily available. Don’t suffer in silence.
For those in the UK or Europe and US, there are different Facebook groups to join, link below. Find our communities, we know what you’re going through and will provide support and advice.