IKAGENG MOHALE

IKAGENG MOHALE was born in 1976 and at the age of fifteen months he developed kidney disease. He was taken to the Paediatric Unit at Chris Hani Baragwanath Hospital where he was put onto peritoneal dialysis. At the age of nine he was transferred to the Paediatric Renal Unit at the Johannesburg Hospital where his first kidney transplant was performed in 1985; the transplanted kidney was rejected the following year and he went back onto peritoneal dialysis. His second kidney transplant was performed in 1988. He was well during this time and received his schooling in Botswana, the home territory of his family. He passed Standard Eight at school and early in 1998 the second kidney was rejected. Following this he received haemodialysis at the Johannesburg Hospital Renal Unit. During this time his schooling was interrupted because he had to attend dialysis three times a week.

Ikageng lives in Diepkloof with his parents. He studied drama from the age of 10 and he loves music. With encouragement from his mother, who is a nursing sister at Chris Hani Baragwanath Hospital, he studies and reads. He watches television while he is on dialysis. He has a vision that people living in informal settlements and squatter camps should be better housed and “living happily and trouble free”. Self taught, he currently organizes two to three educational workshops a month, in which the inhabitants of these areas, in the region of Gauteng and Tshwane, are instructed how to obtain work, secure their own property and acquire housing subsidies. Ikageng registered his company, Barolong Productions, in 2001.

NORMAN MARK MYEZA

"My life was shattered when it was announced that my kidneys have packed-up. At first I thought the doctor made a mistake I took it lightly until it sank on me when the doctor indicated that I need to be admitted for further observation and treatment. The reason I took it lightly was the fact that all seemed ok and I only went to the doctor to check on my high blood pressure and that my urine sample showed high protein content. My kidneys were no longer filtering the proteins. Before diagnosis I use to weigh 98-100 kg then my body weight shrank after the bad news to 65-76kg, I became darker in skin color due to low haemoglobin. My HB level dropped to 6 when I was in hospital. My blood pressure averaged 198-200. My family suffered the wrought of my mood swings and the whole renal failure issue had a huge knock on my self-esteem.
I was no longer energetic and we use to go out with my family for dinner; that stopped as well. My kids got withdrawn as well and I could feel that they were drifting away from me. Some friends started to withdrew themselves from me and I remember one of my friend suggested that I should go for HIV test.
Handshakes and body hugs were tighter before diagnosis and after diagnosis there were less hugs and handshakes became softer and other people avoided touching me. I was constantly ill until I started dialysis which was not a good experience I must say, especially when a fistula was done because I had to use the needles. My involvement at work also dropped and I had to sit down with my bosses and request for lighter duties because every second day of the week I had to go for dialysis. My whole lifestyle changed I had to stick to a renal diet which prevented me to eat things I use to enjoy.

My urine output dropped drastically until I couldn’t pass any urine at all. I could feel the sensation but when I wanted to pass urine nothing came out which was a painful experience. I stopped passing urine late 2005 till I got transplanted on 29 September 2008. I had to restrict my fluid intake. I couldn’t drink over 2 litres of fluid during my dialysis days. It was a big challenge to control my fluid intake and I always had a problem when I have to go for dialysis I was always overloaded especially after week-ends it became a problem on a Monday when I go for dialysis. That had huge effect on my health as well cause I use to develop body cramps because they had to draw more than 2 litres of fluid.

I was also constantly ill and would go in and out of hospital due to complications. My medical aid savings account w as always exhausted and we had to pay from our own pockets for our kids’ consultations. As a result I was highly indebted. I have been given a second chance with the new kidney. Life has been great. My system is back to normal. I’m now able to pass urine which was a great feeling after years without being able to. My family was so ecstatic when I got the news that I will be transplanted. Life is back to normal no more mood swings. My bosses were also happy and I’m now able to perform my full duties at work. It was a difficult experience at work because I couldn’t attend important training and workshops due to the dialysis schedule. My body weight is normal and though I have to stick to some diet. After full recovery I will be able to eat and drink fluids like I use to before diagnosis though with some restriction due to the medication I take. I also got to know who are my true friends and people who supported me through thick and thin."

GORDON MANQOBA GULE

I was horrified to realize my body changes due to body swelling and my belly-button consistently aching and not being able to stand up-straight for few minutes. After months of being in a limbo about what was going on with my own body, I consulted with a doctor and he hospitalized me right-away after diagnosing me with symptoms of high blood pressure and many others. With me, I thought I was just gaining weight and people thought I was now living large as it is in our black community until it got worse and worse.

As I am a musician, my performance started deteriorating and walking long distances was no longer an option. I started to drink water like never before as got more and more thirsty and no liquids really quenched my thirst. I was hospitalized on the 27th September 2003 and at that time I thought I was dying because I had short breaths and that made it difficult for me as I needed a lot of air and my whole body was in pains. At the hospital they operated me and went through machine that cleansed my system and I learned that my kidney ha packed-up. I was now introduced to a totally different lifestyle of taking responsibility of dialysis, medication, diet, etc. which was a bit difficult but had family and friend who gave me much needed support. I ended-up dropping out of school as the schools bathroom were in an unhygienic state as that is a health hazard to my then situation. Not being able to travel was also another issue that was difficult to adhere to as I am a musician and that came with lots of travelling. If I was not going to sleep at home I would have to carry my dialyzing bag.
Fortunately enough God answered my prayers and I never got any infections and on the 01st August 2004 I was called Johannesburg Hospital for my kidney transplant and co-incidentally on that weekend a doctor in Italy phoned to request my medical records as they had a possible donor.

Ever since then my life has changed remarkably and I thank GOD for allowing or giving me a second chance in life and we (O F SENSE) have taken it upon ourselves to raise awareness, raise funds and do advocacy work kidney disease in South Africa. This is to thank the person who willingly donated his or her kidney to me as a token of appreciation. I know how difficult it is to control, maintain and manage this disease with necessary support like financial and non-financial for medication, diet and emotional support. Thank you GOD, family and friends for everything and this is from the bottom of my heart!
My life after transplant is healthy and it is my fifth year anniversary with my new kidney on 01st August 2009. I fully participate with my band O F SENSE at rehearsals and performances across the country. O F SENSE is ready to work and raise necessary awareness and funds for all kidney patients in South Africa.

MAXINE SMITH

MAXINE (Mad Max) SMITH’S EXPERIENCE: LIVING WITH KIDNEY DISEASE

• Who am I – Maxine Smith – Known as "Mad Max".
• Diagnosed with Kidney Failure end of February 2006.
• Remember clearly being overwhelmed with various emotions and how was I going to cope, as those that know me well, know me as an individual that lives life to the full.
• Healing process started with the professional help and support from my Kidney Doctor – Diane Campbell, Nurses and Staff at Sunninghill National Renal Care, Family, Friends, National Renal Care, South Africa and My Biking Friends at Traditional Triumph Connection in Edenvale.
• Decided to make a difference in people’s lives by sharing my attitude towards life and the lessons I learnt along the way, because you see "Max" had not changed, she just had to learn to live well with Kidney Disease and what a journey it has been.
• All my obstacles became challenges.
• I found myself reaching out for everything positive in life that would encourage me rather than discouragement.
• I have always felt guided by divine intervention and my Special Angels in Life, they know who they are.
• I realised to live well with Kidney Disease, I would have to live it with Passion, Enthusiasm and do it Triumphantly (I ride a Triumph Street Triple R 675 CC Motor-Bike).
• So Max got to work …




So this is what I did, and still am doing today:

• Educated myself on all the medical terms relating to Kidney Disease.
• Looked after my health and well being, by eating the correct foods, watching fluid intake (very hard, especially in Summer), exercising – absolutely critical, took Doctor’s advise and Clinical Nutritionist’s advice on all of this.
• Asked lots of questions regarding the Dialysis Machine and how it affects your body
• Got to know what my Blood Tests and Values meant every month, and how could I improve.
• Researched on the Internet, read up on books, magazines, anything relating to Kidney Disease, I read and passed this information, not only to other Kidney Disease people, but to the normal healthy person in the street – information is power!
• Made a decision, that I was going to manage this Disease, and not it manage me, this is really important.
• I've learned how to look at life from a completely different angle, and I've learned that the road goes on, and that you never stop living and learning, embrace life, because it is fantastic, and most people only get one chance at it, I got a second opportunity, so I count my blessings daily.
• Live your life to the full, that is what I am doing, I drew up a “Bucket List” and started to action. Here are some of the things on my "Bucket List", everyone is different.
• Motor-Bikes are my passion and I am having the "Rides of My Life".
• I raced in the 2010 Regional Ladies Class 600CC.
• Riding to Cape Town in July with my fellow Triumph Bikers to raise a R 1 million for National Kidney Foundation, why – because they do special work and are special, close to my heart.
• Am an avid Fund-Raiser, believe in giving to others, less fortunate than myself. When you focus on others, you place less focus on yourself, and you soon realise that your life is not that bad.
• Studying towards my Diploma in Nutrition and Exercise Science.
• Involved in various projects.
• Entered Mrs United Nations South Africa 2007 and was a Finalist and won the "International Directors Award" and the "Interview Award", nothing is impossible.
• Travel all over South Africa on my Motor-Bike and dialyse in the different towns.
• Travelling abroad to some exotic locations.
• Developed my own Website as a vehicle to help people out there with Kidney Disease and educate – www.2mad4u.org
• Realising all my dreams, have many, but the biggest one is to become a Philaprothist and make this world a better place for mankind and nature. One of my many gifts/talents is I love to give and care, and cannot think of anything better by giving back to the world and leaving a legacy that will enrich this special world.

I have tried to highlight a few pointers on how to live well with Kidney Disease and my experience, and I honestly can tell you, I have been truly blessed and am happy. Life is a journey, not a destination – and we can make it meaningful and worth our while!

I leave you with this:

"Our lives are not determined by what happens to us but how we react to what happens.

Not by what life brings to us, but by the attitude we bring to life, A positive attitude causes a chain of reaction of positive thoughts, events and outcomes.

It is a catalyst, a spark, that creates extraordinary results!"