Recipient Stories of Hope
Nelmari De Beer
Bone Tissue Recipient
For two years Nelmari de Beer (24) suffered constant pain and a series of misdiagnoses. The attractive blonde woman explains how in 2014 her misery began with her experiencing a severe pain in her left side.
Initially she was diagnosed with irritable bowel syndrome. When her pain remained after completing a course of treatment, she went back to her doctor; to be diagnosed this time with appendicitis. But the removal of her appendix still did not resolve the problem, and it was only when a large red spot appeared on her thigh, that she was referred to an oncologist for a biopsy and further tests.
"This was an extremely traumatic time for me and my family. At my age, the last thing one wants to think about is the possibility of cancer. I'm the youngest of three children and my mother took it particularly badly. Fortunately the results of the biopsy came back negative for cancer, but there was a serious infection, which was eroding the bone and there was a real danger of losing my leg," says De Beer.
"The specialist explained to us that the most effective solution was a bone allograft implant, which would help the diseased bone heal in time. Although the thought of another operation really scared me, the pain was excruciating. I was constantly tired and I had no zest for life left. I would have done anything just to feel better."
Two years of constant pain and uncertainty about what was wrong has come to an end for Nelmari de Beer (24), following the successful implant of a bone allograft.
The bone allograft implant operation was a resounding success, and after six weeks of intermittent hospitalisation, her doctor gave her a clean bill of health. The scar that runs from the top of her femur almost to her knee is a reminder of the operation's success.
Nelmari no longer walks with a limp, and is strengthening her leg daily with exercise. She feels like a new person and looks forward to the day that she and her boyfriend can hit the dance-floor again.
She has larger than life plans that include staying healthy and also to settle down and someday start a family of her own. Nelmari is grateful to the donor whose selfless gift ultimately saved her leg. She was one of the tissue donor recipients who took part in the Pretoria Donor Tribute (03 September 2016) to pay tribute to the donors and honour their families. She realises the value of becoming an organ and tissue donor and how this can change someone's life for the better.
Back in 2008 when Rosina Mentoor was a young girl in Grade 4, she was diagnosed with Glaucoma in both eyes. At that point in time her right eye was the strongest, and she was fortunate enough to receive a cornea transplant on 28.07.08. The decision was taken by her specialist to delay surgery in her left eye, but to schedule another cornea transplant as soon as one became available.
Unfortunately this did not happen until 2014 when Rosina was in Grade 10. The corrective surgery was unsuccessful and Rosina completely lost the sight in her right eye. She is permanently blind in that eye.
In 2015 Rosina underwent further surgery to have armoured valve tubes inserted in her eye to reduce the pressure in the eye nerve. Her eye must be constantly monitored and at times she is required to take meds to ensure the pressure is maintained at a 'norm'.
Rosina signed up as an organ & tissue donor at the end of January during this year's Pukke Jool (North West University, Potchefstroom). Elize Scheepers, (also an alumni from this University) Coordinator for the Centre for Tissue Engineering launched an awareness campaign during the annual RAG/JOOL festival. With the buy-in from Prof. Fika van Rensburg (Rector) who set an example by registering as a donor, and with whose support further awareness opportunities will take place during the year. Charonike, of Puk FM, will also be involved in spreading the word, and motivating other universities to run similar campaigns where students will be educated and encouraged to register as an organ and tissue donor.
Rosina was motivated by her Mum to register as a donor, and also had the discussion with her brother who is an Anglican Reverend. Both encouraged Rosina to sign up as a donor.
Rosina feels blessed to have received the cornea donation, and is grateful to the donor family for their selfless gift which ultimately saved her vision in her right eye. Realising the value of becoming an organ and tissue donor and how this can change someone's life for the better, Rosina would love to help others in turn and pay it forward by encouraging others to register. "If it helps somebody else in the long run then why not?" she asks.
Rosina is a first year student studying micro-biology and physiology, but can see herself working in a lab some day, ultimately helping others. She would love to study genetics and psychology.
Imagine if Rosina had been in a position to receive another cornea sooner? There is an enormous discrepancy between the numbers of registered donors and patients in need of a transplant in South Africa, and a great deal more education and awareness is needed.
We believe Rosina is a hero who by her example is breaking cultural taboos and boundaries, and motivating more of her peers to register and become heroes!
Durban-based Yvonne Milan was diagnosed with osteoblastic osteosarcoma in her right tibia, in the January of 2010.
She consulted doctor after doctor, several in fact, but medical opinions concurred; Yvonne would need to have her leg amputated, and she was scheduled to begin chemotherapy in March 2010.
When her oncologist suggested that she consider “limb saving” or “limb sparing” surgery, Yvonne considered that of the two options, this seemed the least drastic, and far more preferable.
“Well, my leg was going to be chopped off, so I agreed,” she said.
During limb sparing surgery, the cancerous tissue is removed and the oncological orthopaedic surgeon replaces the diseased bone with a prosthesis or bone graft. After her surgery, Yvonne’s 35 year employment history at a financial institution ended with her becoming medically boarded.
“I was told that I would not be able to walk again and would be confined to a wheelchair. But instead I do have the use of my leg and can walk and have more time to concentrate on my church work. My life is 99% back to normal.”
Yvonne, now 60 years old, is able to enjoy spending time with her retired husband, both adult daughters and her two young grandsons — both of whom were born after her successful “limb sparing” surgery. She is also very actively involved in her church activities, which is something that gives her great satisfaction.
Her plea to members of the public is that they consider registering as donors. “If I did not have the option to have such an operation, I would have been wheelchair-bound,” she said. “My self-esteem has been restored.”
Yvonne comprehends the value in becoming an organ and tissue donor and how this can completely change someone's life for the better.
Desré Jenkinson, originally from Queenstown, and now Johannesburg based, is a multiple cornea recipient.
Throughout her life (since her teens) she has worn glasses or contact lenses. It was during one of her regular eye visits in April 1998 that her ophthalmologist Dr van Niekerk, discovered that her cornea was exceptionally thin and recommended that she receive a replacement. Her name was added to the waiting list and after some two years, in January 2000, she received her first donor cornea (locally sourced).
The cornea lasted around 6.5 years until it was rejected, and Desre received a replacement in 2006.
During her ongoing regular checkups Desre’s ophthalmologist noticed that her vision was deteriorating as a result of her body rejecting the donor cornea. She received a third cornea in 2011, but within a few months it once again rejected and had to be replaced. Unfortunately this was also short-lived. Her last (5th) cornea replacement took place in 2012. Desre was informed that the latter was donated by a young donor. This really hit home for her as she has children and grandchildren of her own – how wonderful to receive help through the actions of an unknown stranger!
Desre feels blessed and extremely grateful for the gift of sight. Were it not for the generosity of her unknown donors she would not be independent or mobile. She would not have been blessed to experience a recent extended overseas trip with all 5 of her senses intact. She would not have been able to witness the birth and growth of her grandchildren – the most recent 3 weeks ago!
With her history of deteriorating eyesight, it is a blessing that Desre is grateful for every single day of her life.
She is constantly amazed by the fact that just one donor can help so many people through his/her selfless gift, and advocates for organ and tissue donation.
Desré gives thanks to the selfless donors whose generosity ultimately saved her sight. She realises the value of becoming an organ and tissue donor and how this can completely change someone's life for the better.
Back when Zodwa Maseko was a young girl in Grade II, she was diagnosed with short-sightedness (or myopia) and spectacles were prescribed. Zodwa really didn't enjoy the fact that she had to wear spectacles, and was secretly delighted when her toddler sister broke them! It was only when she attended University to study Journalism and Library Science that she realised that her eyesight wasn't what it should be; and that she couldn't read what was written on the board at the front of the lecture room.
She was fortunately amongst the very first to trial contact lenses which were new on the market, but that was until she contracted eye infections in both eyes. Zodwa later realised that her vision had always been sensitive to dust, light, pollens and so on. What followed next was Radial Keratotomy (RK) Eye Surgery in both eyes, her specialist Dr Percy Amoils. (In the eighties this procedure was once of the most common ways to correct nearsightedness. However with the rise of more effective procedures like LASEK, LASIK and PRK, it is now considered outdated). For a period of some ten years Zodwa enjoyed good vision, but thereafter discovered that she needed reading assistance - as is the norm with the gradual onset of the more mature years. What followed was a number of visits to various specialists, (including Dr Jan Talma at the Pretoria Eye Institute), where Zodwa received surgery and permanent lenses.
After numerous treatments to address the macular degeneration in her left eye, Zodwa was given the news that a cornea transplant would be the very last resort. When this situation eventually arose the problem facing Zodwa was that the cornea would have to be sourced from overseas; as a result of the severe shortage of donor cornea tissue in South Africa. This type of procedure is costly and Zodwa feels extremely fortunate that she is currently a long-term member of an exceptional medical scheme.
Zodwa obtained authorisation from her Medical Scheme for the procedure in January 2016, but only received her cornea transplant on 10 May 2016. Zodwa recalls that the procedure was relatively quick, and that after the overnight recovery period she could clearly make out the chair in the specialist's room once the protective eye cover was removed. Initially Zodwa used steroids as an anti rejection measure, with as many as 6 or 7 different eye drops requiring 2 hourly administration. Nowadays Zodwa uses 3 eye drops twice per day.
Unfortunately, only some six months later saw Zodwa being admitted several times over the December/January period to receive treatment for a fungus that had since developed in her eye between the cornea and the retina. Tests showed that 'sugar' was at the root of the cause. Although Zodwa has a family history of diabetes Type II, she herself has never suffered with the affliction. She is now on diabetic medication to control the sugar levels, and will require another cornea transplant to remedy the loss of vision and heightened light sensitivity.
For the time being she must wear sunglasses constantly.
Zodwa and her family members are all registered as organ donors, and Zodwa uses every available opportunity to educate and create awareness around organ and tissue donation. A topic she herself knew nothing about prior to her cornea transplant.
Zodwa is a fierce advocate for educating her people around their beliefs that the human body must remain intact following death, or face the displeasure of the ancestors. She feels blessed to have received the cornea donation, and is grateful to the donor family for their selfless gift which ultimately saved her vision in her left eye. Realising the value of becoming an organ and tissue donor and how this can change someone's life for the better, Zodwa has enlisted as a volunteer and encourages everyone she knows to register!
It is a tragedy that Zodwa was unable to receive a cornea sooner via a local tissue/eye bank. There is currently an enormous discrepancy between the numbers of registered donors and patients still on the waiting list, and still in dire need of a transplant. A great deal more education and awareness is needed here in South Africa.
We believe Zodwa is a hero who through her volunteer work is breaking through cultural taboos, and educating more of her peers to understand the need for organ and tissue donation, especially when they may someday find themselves in a similar situation, and needing assistance.
Zodwa was also one of the tissue donor recipients who took part in the Pretoria Donor Tribute (03 September 2016) to pay tribute to their donors and honour the donor families. She fully comprehends the value of becoming an organ and tissue donor and how this can change someone's life for the better.
One family's experience with both sides of the incredible process that is Organ & Tissue donation. Two stories that started out as one, are now tightly interwoven with the same golden thread of hope. We share both stories together, to encapsulate the close relationship shared by siblings Mark Hendra, and Tanya Bothma.
Tissue Donor (10/11/1980 – 02/07/2017)
Centurion-based Mark Hendra (36) was a vibrant, dynamic young man in his prime when he fell to an untimely death after his powered paraglider spiralled out of control. The tragic incident occurred at Sunderland Ridge, one Sunday afternoon in July; and both devastated his family, and left the Centurion flying community reeling in shock. Described as adventurous, with a big heart for his family, animals, children and the environment, the IT businessman had recently relocated to Centurion, from Cape Town. Mark was an avid flying enthusiast who started his microlight training in Cape Town a few years earlier. Flying had quickly become his passion, and he often shared aerial photos or videos with his family.
Grasslands Sports Club chairperson Andrienne Visser said that Mark had been a member of the club for nearly a year, and had spent most of his Saturdays and Sundays out at the flying field. She commented, "Everyone on the field loved him very much - you do not get many people with big hearts like his around anymore.” Visser confirmed that a few people had seen Mark falling from the sky and immediately rushed to his aid. One of the club members began performing CPR on him, and from there “an officer from the Scorpion Risk security services took over the CPR compressions, as he was a level 3 first aider,” Werner Vermaak, ER24 emergency services spokesperson said paramedics responded around 17:00 pm to the accident alert. Upon arrival at the scene, they found a bystander performing CPR on the man. “Paramedics assessed him and discovered that there was, unfortunately, nothing more that could be done to assist him; he was declared dead at the scene." The cause of the accident was not immediately apparent. The SA Hang Gliding and Paragliding Association (SAHPA), said it was investigating the accident. Schalk Bothma, Mark’s brother-in-law, described Mark as an adventurous soul, who committed himself wholeheartedly to any project or hobby. “He loved living his life and didn’t hold back on anything.” Although Mark was not married and had no children of his own, he was family orientated and never missed a family celebration or birthday. “He would fly to Cape Town from Centurion on every occasion,” said Bothma. He said the family was heartbroken and finding it extremely difficult to come to terms with his death. Bothma added that his wife Tanya, Mark’s sister, had been diagnosed with an asthmatic disease as a child and that Mark was incredibly supportive, comforting her if she wasn’t feeling well. With only 15 months age difference between them, Mark and Tanya were very close. "We don't know what happened, but we know Mark. He had a giving heart, and we are always going to miss him very much."
Based on the fact that that Mark was a registered organ donor already, the Hendra family had absolutely no hesitation in agreeing to donate some of his tissue for transplant purposes. Despite their overwhelming grief and loss, it was a privilege for them to consider helping someone else in need. Their gift provides hope and gives patients with a chance to live a full healthy life again, and that’s the greatest gift that one could give someone else! At this point, (October 2017) the Hendra family find themselves on both sides of the spectrum. On the one hand, they have experienced profound loss, but with that, some comfort knowing that Mark left his legacy through donation. On the other hand, they have Tanya, who is desperately ill, and who, since Mark’s untimely death, has very recently received confirmation that she is on the active waiting list for a lung transplant. This story is so powerful. It is at the same time sad and incredible – that one family has donated and also needs a donor. Judy Hendra, Mark’s mother, is an Occupational Health Practitioner and has wanted to be a nurse since she was only four years old. She does what she loves, every single day. Together we (Mark and I) made a difference in so many people’s lives” she added. Both mother and daughter have committed to promoting organ and tissue donation, and Tanya is currently preparing for her transplant procedure.
We first came into contact with this petite blonde, while gathering information for the Tissue donor story on her brother, Centurion-based Mark Hendra (36) the dynamic, vibrant young man who tragically lost his life after his powered paraglider spiralled out of control on a Sunday afternoon in early July 2017. This tragedy left his family devastated and Tanya, his elder sister, has been battling to come to terms with this loss, ever since. In Tanya’s own words “I can’t tell u how much I miss him”!!!! Since Mark's accident, both Tanya and their Mum, Sr Judy Hendra, a registered nurse (Occupational Health Practitioner) offered to assist in promoting Organ and Tissue donation awareness. The siblings, Mark and Tanya, were especially close (not only due to their age difference of a mere 15 months), but rather because Mark had always been there to offer reassurance to his sister, diagnosed as asthmatic at only 18 months. Mark proved to be an incredible support to Tanya throughout their lives together.
Having been privileged to tell Mark’s story, we requested final comment from Sr Judy, only to learn that Tanya had been waitlisted for a lung transplant and placed on the 'active' lung transplant list! Tanya received formal notification from the Division of Pulmonology, Groote Schuur Hospital on 01 November 2017. Having battled her chronic illness from an early age, Tanya’s hopes were raised when she heard “The call that we have a donor, can come at any time!” Although being a donor-recipient means that the patient receives a chance at a lifesaving procedure, the patient’s hope and anticipation balances on a sword edge, with the knowledge and realisation that another family will be mourning the loss of their loved one. (The very donor whose legacy gifts life to the donor-recipient and allows his or her family the hope for a second chance at life. The donor's family will receive some measure of solace, knowing that they have fulfilled their loved one's wishes, and knowing too that their loved one's legacy will live on). How bittersweet, yet how honourable. How absolutely incredible.
- update -
On Sunday (10 December 2017) we received word from Tanya’s mother, Judy Hendra that Tanya had received a call to alert her about a lung donor that was a suitable match for her. Tanya went into theatre on Monday, 09h00 for her lung transplant procedure, and at 16h00 her family received word that her ‘new’ lungs were working, that she was no longer on the support machine and that the medical team were busy closing her chest...! From there, Tanya transferred to the Intensive Care Unit, where the surgical team reassured her family that the procedure had gone as well as could be expected and that the following 12 hours would be critical. Tanya remained in ICU where she was closely monitored. The family were advised to expect the next three months to be quite eventful with ups and downs. The Hendra and Bothma family's text message read…(with kind permission Judy Hendra) “It (the lung transplant procedure) is an incredible event in our lives and we will live by His Will and trust that from here it goes as well as the operation itself. Thanks to everyone for your prayers and words of strength and love. We are all very tired but grateful and at peace. Daniella (Tanya’s little girl) is doing well and just happy to see mommy come past to ICU. I will try and keep you guys as updated as possible in the time going forward, and lots of love from the Bothma and Hendra family. At this time particularly, we salute and give thanks for each and every donor family, for their courage in agreeing to honour and respect their loved one’s wishes, especially in the midst of their grief and pain. You can be so very proud of your loved one, and the legacy of love that they have left behind. The ultimate gift to another".
- update -
(with kind permission and in Judy Hendra's words)
Wednesday 2018/02/21 – "Tanya is on the fast track to recovery, there have been some challenges along the way as expected – heart flutter that necessitated a stay in ICU for a few days, and some medication – a fungal infection in the lungs that required a week’s stay in the hospital, and some medication. Continuous nausea throughout is also making it difficult for Tanya to eat and gain necessary weight. But….today, officially we can confirm that Tanya has got normal lung function for the first time in her life, she has increased her capacity from 400ml of air to 2L of air flow, and she is already doing exercises with her pulmonary rehab that she could only dream about doing before! The phenomenal care that Tanya has been receiving from Groote Schuur hospital has been nothing short of amazing. From the procedure itself, the excellent care in the ICU, to the weekly visits to the transplant clinic has been nothing but professional, diligent and of the highest medical care available. Tanya will be forever grateful to these medical professionals doing their utmost best to improve the lives of the patients in their care. And then she (Tanya) is especially and eternally grateful for the donor, and so painfully aware of the pain and grief experienced by the family and friends of the donor since she has experienced both sides of this incredible process called organ donation.
And finally we trust in God and believe that His hand is in all of this, and one day we will understand why this amazing gift to one and at the same the tremendous pain for another, goes hand in hand. We urge you to consider becoming a donor, and of leaving a legacy of your own. Thank you". The Hendra & Bothma families.