Vivian de Klerk (2011)

 In Survivor stories

[Vivian de Klerk] At the age of 23 I was diagnosed with a very rare, chronic and debilitating bone marrow disease called Paroxysmal Nocturnal Hemoglobinuria (PNH).  This disease is a genetic acquired disease (meaning that there were a mutation in my genes but I did not inherit it from my parents).   The disease left me very tired due to fact that my red blood cells had a short lifespan and I had to rely on regular blood transfusions to keep me alive.  I was also at risk of internal bleeding and blood clots due to my dysfunctional platelets.  In short – my blood was not doing what it was designed to do due to a missing gene.

After being diagnosed with the disease I was referred to Prof Peter Jacobs at Constantia MediClinic.  This was the first of many blessing.  Prof Jacobs and his team was one of the most experiences professionals in the field of haematology in South Africa and he soon realised that I urgently needed a bone marrow transplant.  Although there were only a small change of this saving my life it was the only option.  The search for a matching donor was underway.

Finding a donor proved to be easier said than done.  There were no matching donors on the South African Bone Marrow Registry and none of my family members were a match.  Weeks became months and months became almost three years.  While waiting I received regular blood and platelet transfusions.  I wondered if I will ever find a matching donor.  Then, at the end of 2010, Prof Jacobs’s office phoned to tell me they found a matching donor in Germany.  I was scheduled to have my transplant on 13 January 2011.

After having chemotherapy to eradicate my own unhealthy bone marrow I got injected with the donors stem cells.  The stem cells was harvested the day before in Germany and flown to Cape Town where it arrived safely on 13 January 2011.  Everyone hoped and prayed that the stem cells would start growing and after a mere seven day Prof Jacobs came into my room and told me that I can go home the following day.  He couldn’t believe how fast the donor cells engrafted and that my blood results showed a spike in the right direction.  The transplant was a success.  One of the nursing staff came into my room and said “God, your amazing!” I said: “No, God is amazing!”  This was truly a miracle that was overseen by a Higher Hand and very dedicated medical professionals.

Soon after my transplant I started exercising again.  I could feel the difference in my body and it was such a nice feeling to be able to walk without getting tired. A year after my transplant my mother and I hiked the Fish River Canyon in Namibia.  This was an amazing experience and I was truly blessed to be healthy enough to enjoy this experience with her.

In 2014 I participated at the South African Transplant Games that took place in Cape Town.  This was my first year to participate and I did not know what to expect.  I entered the cycling event and did javelin, ball throw, long jump and the 1500m.  It was really humbling to compete with other athletes that also had transplants.  There was a shared feeling of admiration between the athletes. I knew that the person next to me went through a lot to be there.  I knew we were there because someone else’s heart or lungs or stem cells were keeping us alive.  We were there to compete in sports but most of all we were there to celebrate the gift of life.

I managed to qualify for the World Transplant Games that took place in Argentina in 2015 and went on to win medals in the cycling, javelin, ball throw, long jump and the 4 x 100m relay events. In 2017 I was privileged enough to be selected for the South African Transplant Team again.  Over 2000 organ recipients from all over the world competed in Malaga, Spain and I returned to South Africa with a few more medals and a renewed realisation of the special gift I received from a willing stem cell donor.

Being selected for the South African Transplant Team and receiving Senior Protea Colors in 2015 and 2017 was definitely one of the highlights after my transplant.  Being an athlete in the SA Transplant Team held more responsibility than just competing in a sporting code; it was about showing gratitude towards your donor and the donor family and encouraging people to become organ donors. It is also a way to encourage other organ recipients to live a healthy life after a transplant.  Nothing is impossible after a transplant.

Five years after my transplant I had the privilege to make contact with my donor.  Without this persons gift of life I wouldn’t be here today to tell my story.  I learned that my donor, Linda Kepler, was only 21 years old when she decided to become a stem cell donor.  Her gift gave me the opportunity to live again.  Without her I wouldn’t have being able hike the Fish River Canyon, win medals at the World Transplant Games, climb mountains or ride my mountain bike.   I know that I am not a survivor but that I was saved by a willing donor.  I am truly blessed with a second life.

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