Around this time last year, Cape Town-based Zimbabwean Gugulethu Monalisa Mapuranga underwent a life-changing kidney transplant. In this discussion with The Sunday Mail’s Garikai Mazara, which also coincides with the recently celebrated World Kidney Day – held annually on the second Thursday of March – she relives the journey she has travelled.
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Q: How did you find out you were having kidney problems?
A: It all started a few months after I gave birth to my son Jayden Maramba. I had a bad cough and doctors thought it was bronchitis and it escalated to shortness of breath and joint pains.
Q: Which year was that?
A: That was in 2010.
Q: How then did you know it was related to kidneys, or that the kidneys were the problem?
A: We went for a weekend away with my husband, Shakespeare Maramba, and I opted for a back massage because I was having back pains and he went for wine tasting.
Just after the massage I started feeling very dizzy and so out of breath. I thought it was one of the usual attacks but it got worse at night and we had to check out. My husband rushed me to hospital as I was vomiting blood and out of breath. I was rushed straight to the emergency ward and that is when the journey began.
At first I was diagnosed with lupus, which is an auto-immune disease and they didn’t realise it had affected my kidneys.
Q: Was the kidney problem diagnosed there and then or it took a while?
A: I stayed in hospital for a month and further tests were done and only to find out I only had five percent of kidney function . . . my kidneys were failing. That is when I was prepped for dialysis and had a neck-line catheter inserted.
Q: Prior to this, had you any knowledge of kidney ailments? How did you receive the news that your kidneys only had five percent functionality?
A: I had no idea or knowledge of kidney ailments because no-one in my family had suffered from kidney failure. Acceptance was quite hard . . . at first I thought it was just an illness that could be treated and I would be well again; not knowing it was going to be a life-time challenge.
There was a time I was put on a high dose of steroids and that was the worst part, I nearly lost my mind. I suffered depression because I gained weight to an extent that people couldn’t recognise me and I couldn’t understand what was going on with me.
Q: Besides acceptance, were there any other challenges?
A: Yes, I suffered rejection, my social life changed. I must admit I had a great support from my bosses, the owner of the company I work for, Robert Kaplan. He even took me for a second opinion at a private hospital and surprisingly, the professor who diagnosed me was sitting in the doctor’s room.
Then I knew this was my life now and I had to accept the situation and face the challenges. Immediately I was accepted on the transplant waiting list programme at Groote Schurr Hospital in Cape Town, a government hospital.
Q: Many kidney patients talk of the essence of family support; how critical was this in your case?
A: I had great support from my husband, my family and extended family. They were always there for me, supporting me and even attending dialysis sessions with me.
The greatest support I had from my husband was when I was in a wheelchair for a year. My hips had collapsed and I was put on a waiting list for bilateral hip replacement. I couldn’t do anything, not even walk or sit.
I was in unbearable pain but he always supported me and gave me hope until I had the bilateral hip replacement. I love my family and I really appreciate all they did for me.
Q: Kidney ailments can be financially draining. How did you manage to balance the books?
A: I was so lucky to be accepted on the transplant programme at Groote Schurr Hospital. The medical bills were affordable and I managed to keep my job – as hard as it was.
Normally after dialysis you feel so tired and exhausted but being a mother of three children – Precious (18), Keisha (15) and Jayden (7) – I had to work for them and I didn’t want my illness to affect them in any way. I had to remain positive and just believe one day all shall come to pass.
Q: How long did you have to wait for the transplant? How difficult was it to get a kidney?
A: I was on the waiting list for six years. My blood group is “O”, which is a rare blood group so it was quite difficult to get a match.
My husband was the first person to test and he was not a match. All my family and extended family tested and they were not a match. So I had no option but to wait for a donor.
That’s when I started my Facebook page for a plea for a donor.
Normally when you get a donor it can be a match but when you go for further tests to check if you can have a transplant, the whole process might bring out negative results.
There was a time I got a call for a match; all excited I rushed to hospital and when the doctors did further blood tests they realised I had low white blood cells and they couldn’t go ahead with the transplant. I was so devastated and heartbroken on that day I learnt God’s time is the best time and that patience pays.
Q: Could you share more on the experience of the waiting and transplant itself?
A: Sometimes I would need someone, a friend, to understand what I was feeling and just be there for me, even though my husband was there for me. It wasn’t easy living life on dialysis as I was limited on everything I could do.
I tried so hard to hide what I was feeling.
Sometimes people could look at me and say “Oh, you don’t look sick,” and those words could make me feel so irritated, I felt it invalidated me, given the pain I was going through. It made me feel like people thought it was really not that bad.
I had two diseases to deal with, lupus and kidney failure and worse, had to have a bilateral hip replacement.
It wasn’t easy being on dialysis every second day of those six years and for four hours per each session. After dialysis I had to rush to work and pretend all was well with me.
It wasn’t easy. I was constantly sick, no-one can ever understand what Iwas going through, my life was hectic then, rather difficult to live.
Q: When and how did the transplant occur?
A: The weekend before the Easter holiday I got the news from work that I was getting retrenched as I was incapable of doing my work because of my ill-health. I was given an option of retrenchment or working as a casual.
I was supposed to hand in my decision after the Easter holidays. I was so heartbroken because I was giving my all despite the challenges I was facing.
Not many renal patients can keep up with their jobs while on dialysis. I felt this was the end of it, my world was crushing because of this illness.
I asked God if it “had it come to this”? So the whole weekend I was so depressed and didn’t even go to church for the Easter celebrations.
Then Easter Monday at around 1pm, that was March 28, I remember the day very well, I got a call from Professor Nicola Wearne, screaming on top of her voice, “Gugu, I have a donor for you!” I couldn’t believe it.
I was rushed to hospital by my young sister, Patience and her husband Noble. When we got to the hospital I had the routine blood tests done and all was ready for me.
I was in theatre for five hours. When I woke up I just couldn’t believe that it had actually happened to me. I finally got the transplant that I had waited so long for. I never had any complications except for the side-effects of medication.
Q: Are you at liberty to share who the donor is?
A: My transplant co-ordinator, Fiona McCurdie, came to visit me the following day after transplant and I asked her who my donor was. Unfortunately by law, we are not allowed to share donor information but I was so happy I was able to write a “thank you” letter to the donor family.
I had my kidney from a deceased donor who was a 17-year-old girl who succumbed to asthma.
Q: How has the transplant changed your life?
A: My life has completely changed, many thanks to my donor family, transplant team at Groote Schurr Hospital, all my doctors and renal nurses. I am more positive about life. I am now strong and healthy and happier. I can see my children grow. I am now involved in a lot of activities.
To sum it all, I can now live a normal life.
If I could give any advice to any family with a family member facing dialysis, please let the patient be. Don’t become the patient’s nurse. Understand what dialysis is all about, how it works, how it affects the patient, and make sure you have the same knowledge as the patient.
Always give hope and love to the patient. Get tested for a match. Be a donor.
Q: What should be done to raise awareness on kidney conditions?
A: Everyday young people are being diagnosed with renal failure. More than 100 000 men, women and children are currently on the waiting lists for organ transplants. Every 11 minutes someone is added on the waiting list.
Everyday more and more people die due to organ shortages and lack of dialysis facilities, or even financial constraints. Without organ donation there is no life. I wouldn’t have had a second chance of life.
As Zimbabweans, let us encourage transplantation and organ donation as a life-saving initiative.
Kidney patients face lots of challenges, that is lack of resources, expensive treatment regimes, high costs of dialysis and/or loss of employment.
Our health sector needs to look closer into this, we need to have a complete renal programme in our country that includes organ transplantation. As families and communities, we need to have a culture of donating organs and educate each other more about organ donation.
This is real; it could be me today but tomorrow it can be you or your family member.
Be an organ donor and save lives. Be someone’s hero.
Lastly, everyone needs to have kidney function tests on a regular basis. Kidney disease is a silent killer, you never know when it will attack you.
Watch your salt intake, drink plenty of water and live a healthy life.
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