"It slowly dawned on me that life was never going to be the same."
Kudz Munongi, kidney patient and ambassador
Meet Kudz Munongi, our inspiring new kidney ambassador.
When I was 22, my kidneys failed. It happened very fast. I woke up and I couldn’t see. I thought I was going blind. My uncle took me to the eye infirmary to get checked out. The specialist there knew right away that the problem was not with my eyes, but with my blood pressure, which was dangerously high. It was the high blood pressure that was causing the blindness.
I was rushed to Sunderland Royal Hospital, where they did some tests and worked out quickly that the root of the problem was my kidneys. They started preparing me for dialysis right away because I needed treatment like… yesterday.
At the time I was a student. I’d moved from Zimbabwe two years before to attend university and work towards my dream of becoming a teacher. I was fit and healthy, going to the gym three times a week. I’d been putting on weight, which I thought was muscle, but when I got to hospital it turned out that the extra weight was 15 litres of excess water my failed kidneys hadn’t been able to process!
It was all such a shock. And so frightening. I remember crying in the bed at hospital, feeling so confused and searching on Google to try and understand what was happening to me. It slowly dawned on me that life was never going to be the same.
I had to stop my university studies, and stop my parttime job, because I was exhausted all the time. My feet were swollen and my body hurt, so it was difficult to do any work. My social life pretty much ended. My friends would say “Kudz, why can’t you come out tonight? Why can’t we go and play football or basketball like we used to do?” No one really understood what kidney failure and the treatment entailed.
"I look at my kidney failure as a mission to make me the best advocate for helping others."
You can imagine how difficult it was for me as an ambitious and sociable 22 year old. The doctors would joke, “You probably feel like you’re 78 years old most of the time.” And they were right.
My mental health was in a terrible state. I had depression. But I’m a Christian and I found comfort from my faith. Spending time in church and having positive people surrounding me made a massive difference and gave me hope. And I studied as much as I could at home by myself, just to keep learning, because that is my passion. During dialysis sessions I was studying too. I used to take about 10 books with me to the hospital, and I had two laptops by the side of my bed.
I was put on the transplant waiting list, and every single day I hoped that this would be the day I would get the call to say a kidney had become available. People would always ask me, “Kudz, why do you hold your phone all the time?” and I’d tell them, “I’m expecting the call today.”
In the end, I waited five years for the call. It came at 2am, and I was at home, sleeping. I was so relieved, and so anxious, because I knew that transplants sometimes fail. When you get the call you have to get to the hospital right away. The kidney won’t wait. So I rushed in, and there were many doctors running around and doing all sorts of tests to confirm that I was the most suitable recipient for the kidney. Six hours after getting the call, I went into surgery.
My surgeon was from South Africa, a neighbour of Zimbabwe, and he was excited to be doing my operation. It was a double kidney transplant, from someone who had passed away. The surgeon told me, “The match was such that you could be the only recipient, so you have the benefit of getting two for the price of one.” When you have a transplant, they don’t usually take out your failed kidneys, as it’s believed they still perform some function in your body. So now I had four kidneys in my body.
"My mental health was in a terrible state. I had depression. But I found comfort from my faith."
Thankfully, the operation was a big success. The kidneys took 14 days to kick in, and I felt the difference immediately. Oh wow, it was really life-transforming. My energy returned and I was excited that I could return to university in just a few months when the September term started.
But it wasn’t as if all my problems went away. I did struggle mentally, I must admit, with having someone else’s body part, and I had counselling to help with this. And I had to take a lot of anti-rejection medication and drugs to manage my blood pressure – 30 tablets a day, and they came with side effects. The blood pressure medicine was the hardest. It can make your blood pressure change suddenly. Sometimes you feel excessively tired and fuzzy in the head, and sometimes your blood pressure drops and you’re suddenly cold and can’t really function. You can’t walk. You can’t do anything. So how I felt was never level across a whole day, it was always ups and downs.
It was amazing to be back at university, and to have a social life again. Because of all the studying I’d done by myself while having dialysis, I was able to get my degree with just one more year of studying. I decided I wanted to follow my long-held dream of becoming a maths teacher. So I did an advanced diploma in maths. And then I did postgraduate studies in mathematics education. I passed everything with first class honours. I was studying non-stop, trying to compensate for all the time I’d missed while on dialysis, and hoping that my new kidneys would last a long time.
When I’d first had the surgery, the surgeon told me that the condition of the donated kidneys wasn’t perfect, and that they might last me only five years. But in the end, those kidneys lasted me 13 years, which I’m so grateful for. Three years ago, I started feeling unwell again, and last December my kidney function had dropped to just 7%.
My consultant rang me on 2 December 2020 and told me that I had to come in and start dialysis again. This ruined all my family’s Christmas plans of course. My partner, our three-year-old daughter and I were going to spend five days at my brother’s place. He and his partner like to make a big thing out of Christmas, so we’d really been looking forward to it. But with me having to go back on a three-times-a week dialysis schedule, we sadly had to cancel.
We spent Christmas at home. I had a dialysis session on Christmas Eve, but the following morning I still felt bad. So Christmas morning I couldn’t wake up as early as I wanted to, to open presents with my daughter at 6am when she was up – you know kids.
It’s hard being back on dialysis, especially during the pandemic, when I’ve been having to shield, like most kidney patients. But I think mentally I was better prepared for it this time. I enjoy the conversations I’m able to have with other patients and the nurses. Some of them I’ve known for 15 years now, since I first started dialysis.
There are ups and downs on the unit. Sometimes someone you’ve known for a while isn’t there as usual, and you get the courage to ask, “Where is John?” and the nurse will say, “Oh, John had a transplant.” And you’ll feel happy for John’s fantastic news. But then sometimes it’s the other way, and that person is gone.
And for some people, because dialysis can be so gruelling, they just decide they can’t do it anymore and opt to stop. One of the biggest challenges with dialysis is that often patients don’t just have kidney failure. We all seem to have other health problems too. Most patients have at least two or three conditions they’re trying to deal with. I had skin cancer in 2018, so I had to have chemotherapy. My left leg still swells now, and I can’t use it properly.
Mental health, as I’ve mentioned, is particularly challenging. I’ve spent time reading about depression in kidney patients and cancer patients, while trying to manage my own. At one point I had a breakdown, and they couldn’t put me on any antidepressants because of the other medication I was taking. So I had to cope by myself, using mindfulness, and my faith, and by reading and teaching.
Despite all the challenges, kidney failure has taught me something valuable: you have to find something to live for. You have to have a powerful purpose to focus on. For me, that purpose is making a positive impact on others.
I do it through my work as a university lecturer and as an ambassador for Kidney Research UK. I look at my kidney failure as a mission to make me the best advocate for helping others. I tell myself that’s the reason why I suffered it. There was no other reason. So I take it very personally that it’s my mission to transform lives with what I know.
I am very passionate about supporting Kidney Research UK’s work in every way I can. I regularly take part in research reviews, which involves reading research summaries to see if they are important to kidney patients and fulfil our needs. I’m also working hard to raise awareness of what life is really like when your kidneys have failed. I hope that by sharing my story, people may be inspired to make a gift.
Any gift to Kidney Research UK, of any size, it’s never too small. It may be small in your eyes, but to Kidney Research UK it is a very big gift, because it starts a cascade, a cascade of steps that could lead to something big to help us patients. It could prevent us having to go back onto dialysis by supporting the work of researchers who are finding a way to improve how long a kidney transplant might last. Or it could help improve our quality of life by making treatments like dialysis gentler.
So that’s my story. I’ve just gone back on the transplant waiting list. How long I will have to hold my phone in my hand and wait for that call I don’t know! But until then, I tell myself what I tell other people: when you’re feeling great, do everything you can. Don’t take it for granted. Don’t start thinking about the bad days, because the bad days will come and you can think about them then. When it’s the good days, just concentrate on the good days.”