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Sunday, 05 August 2018 00:00

Great to Have You to Safeguard My Life

Written by  Tan Kim Hion, KL & Selangor / Translated by Yip Sook Ying

Lee Kah Chun (left) thanked the volunteers and medical professionals for giving him the courage to continue living. [Photograph by Woo Yoke Bee]

Life used to be vibrant for Lee Kah Chun, and he used to think that life is within his control. Now, at age 30, his disabling medical conditions had brought him to the brink of death a few times. He finally realized that he has no control over his life. But he is grateful to his father, Tzu Chi volunteers and TIMA members for their care for his medical and emotional needs, and for staying by his side as he faces the challenges ahead of him.


On August 5, 2018, Lee Kah Chun was wheeled to Tzu Chi Setapak Community Centre, accompanied by his father, Lee Ter. It was an extra meaningful day for him because with Tzu Chi volunteers’ help, he has put together a thanksgiving event to thank TIMA members and Tzu Chi volunteers for their help.

Facing tough times at a young age

“I am thankful to all Tzu Chi volunteers, TIMA doctors and nurses, and my father, for being there for me during the tough times. Without you around, I would probably not be here today. It is you who have given me the courage to live on…”

At the thanksgiving event, Kah Chun spoke with emotion and thanked everyone from the bottom of his heart. He also took the courage to finally utter these words to his father: “Dad, I love you!”

His father raised his head trying to stop his tears rolling down his cheeks. His love for Kah Chun was evident from his facial expression, and it touched volunteer Ong Saw Tin deeply.

The past several months had been difficult for Kah Chun. To Saw Tin, this period was equally difficult for her as she watched Kah Chun suffering from his disease.

“I have seen many sick cases in my life, but it is my first to see a young lad enduring such tremendous pain and fears,” said Saw Tin, who has many years of experience in handling cases of Tzu Chi care recipients.

House call by TIMA members

Saw Tin had known Kah Chun since May 2017. Back then, Kah Chun suffered from chronic diabetes that led to kidney failure and required dialysis treatment. The dialysis centre then referred his case to Tzu Chi KL & Selangor. At that time, Kah Chun was staying with his father, and he was reluctant to make contact with strangers. As his dialysis cost was subsidized by insurance coverage, and his family could still afford the medical bills, volunteers told his father to contact Tzu Chi any time should he need help in the future.

In March 2018, a Tzu Chi donor, who is a dialysis patient, informed Saw Tin that a young dialysis patient needed care. Saw Tin contacted the latter and discovered that it was Kah Chun. She visited him at the Kuala Lumpur Hospital to find him more withdrawn and depressed than before. His right lower leg and right ring finger were amputated, and there were many dark spots on his arms and legs.

Saw Tin was surprised to see Kah Chun looked so much haggard within a year. She learnt from the nurses of the dialysis centre that Kah Chun’s right leg had to be amputated due to his deteriorating diabetic condition, which caused cell death. Besides, he was also diagnosed with Calciphylaxis (see Note), and he developed hallucinations. He felt the presence of crawling worms in his body, and he felt very itchy and painful.

He tearfully told Saw Tin that when he was alone at night, he would be hallucinating that there were visitors, and he also felt many worms crawling in his body. He would then scratch and bruise his body.

Saw Tin related, “I was heartbroken to see a young man having to endure such pain. When I heard him say how hopeless he was and that he was just waiting for his time to go, I felt the urge to help him.” She then reported his situation to Tzu Chi KL & Selangor office, hoping that he could receive emotional support from volunteers through regular visit. Other than delivering a sick bed to him, volunteers also modified a chair into a commode to enable Kah Chun to have easy access to the toilet.

After the operation, Kah Chun became immobile; and as he could not get to his house due to the staircases, his father moved him to a temple in Titiwangsa as a temporary solution. The temple is familiar to Kah Chun as he had spent his childhood there, when his great grandmother was managing the temple’s operation.

Kah Chun was cared for by an Indonesian woman, who is also a helper at the temple. His uncontrolled diabetes had slowed down the healing of his wound post amputation. Thus, his father had to send him to the hospital for wound dressing and to the dialysis centre for treatment six days a week. It was a heavy burden on his working father, but he had no complaints at all.

Saw Tin informed, “Kah Chun’s father suffered from mild stroke twice, and that had weakened one side of his limbs. To avoid traffic congestion, he would wake up at 5 am and set off to fetch Kah Chun an hour later. Then after Kah Chun is done with his dialysis session or wound dressing, he would send him back to the temple and rush to work. It is really physically taxing for him.”

In order to ease the burden on Kah Chun’s father, Saw Tin sought help from TIMA to arrange a roster with medical personnel to do dressing at the temple he stays. TIMA members responded to the request immediately and the collective effort warmed Saw Tin’s heart.

Timely medical attention

Kah Chun’s wound required regular dressing, and at each change of dressing, he would yell and groan with pain. His scream saddened all the volunteers. In April 2018, Dr Lau Li Lian changed dressing for Kah Chun and found that his right lower leg had turned black, indicative of cell death. She advised that Kah Chun needed to visit the hospital immediately for further diagnosis. From her experience, it was very likely that an amputation was required to save his life.

Kah Chun objected violently to that suggestion for he did not want to lose his left leg. Saw Tin and volunteers, Yong Mun Fei and Yip Sook Ying, who visit him regularly, kept finding ways to persuade him to change his mind. Even Kah Chun’s father advised him that his life is far more important than his limb; and that life would not be hopeless without both his legs, so long as he could continue to live.

Saw Tin related to Kah Chun that when Dr Tan Pui Sen received a request for a stand-in after completing her 36-hour on call in the hospital, she rushed over to change his wound dressing. A busy Dr Lau Li Lian had also made an effort whenever she was free, to do dressing for him, arrange for his hospitalization matters, and so on; and Pharmacist Sook Ying would refer to the doctors when his conditions took a bad turn, when he vomited, had diarrhoea, skin infection and emotional upheaval. She also brought him medications, supplements and topical antibiotic cream to relieve his medical conditions. The medical team and volunteers were giving their best to safeguard his life, so he too should pull himself together.

It was then that Kah Chun related his concern to Saw Tin and Mun Fei: “I am afraid to further burden my dad if I lose both my legs.” His words moved the two volunteers.

Through his conversations with Kah Chun, Mun Fei learnt that it was not that Kah Chun did not cherish his life, but he was helpless with his illness. Kah Chun also shared with Mun Fei that he disliked studying as a boy because he felt that schooling was a waste of time. He dropped out of school in Form 2, and worked as a mechanic with his father. He later moved out from his house to avoid frequent quarrels with his mother.

At age 19, Kah Chun was diagnosed with diabetes and treated with medications. But feeling that he could take full control of his life, he refused medications and treatments, and instead, continued drinking carbonated drinks and alcohol, consuming seafood and smoking without restraint. He even tried taking drugs, which took him more than two months to overcome the addiction.

His parents were concerned about his health, but their advice had fallen on deaf ears. It was not until his mother was in her final stage of lung cancer that Kah Chun moved back home to take care of her. During the six months of caring for his mother, Kah Chun tried his best to keep his composure. He realized that life was so fragile and impermanent.

His mother passed away in 2013. Now, Kah Chun could understand the fear and pain his mother went through when she was sick. He related that his diabetic conditions took a bad turn three years ago. He was put on medications and later, insulin; and last year, he had one of his legs amputated.

When Kah Chun learnt from the doctor that Calciphylaxis is a rare disease that occurs in one out of a thousand people, he was devastated. He kept asking why it had to be him to suffer from it. He was in despair because he had seen some diabetic patients dying after amputation.

Empathized with the emotional pain Kah Chun was going through, Mun Fei would take the former to the park in the morning to feel the sun and the breeze. Being with nature had made Kah Chun appreciate lives more. Saw Tin and Sook Ying also promised to accompany him to the hospital and be with him no matter what happens.

At last, Kah Chun agreed to be treated at the hospital. Although his left lower limb had to be amputated, his wound was healing well and he was grateful that he made the right decision to save his life.

Uplifted life

At the thanksgiving event, Saw Tin recollected the past several months caring for Kah Chun. She would sometimes receive phone calls from Kah Chun in the middle of the night, complaining that he could not sleep. Every time Kah Chun was in pain during wound cleaning, she would be there holding his hands and giving him emotional support. When she saw Kah Chun skipping his meals or smoking, she would offer her advice patiently. She would also accompany Kah Chun for his hospital visits, and seeing Kah Chun crying in despair upon learning that an amputation was necessary, she could not help but sob at the corner.

Saw Tin expressed, “I am thankful to the medical team for being so supportive. When Kah Chun has medical problems, I would ring and discuss with Sook Ying. There were many huddles but collectively, we managed to overcome each one of them.”

Saw Tin is like a mother to Kah Chun and Mun Fei his elder brother.

Kah Chun shared, “Mun Fei accompanied me to the park and taught me to say, ‘Dad, I love you’.I am very touched.” Kah Chun could feel the generation gap between him and his father because both of them did not express their love for each other. Since he has fallen ill, his father has taken care of him without complaints, but he had never told him that he loves him.

In the park, Mun Fei showed Kah Chun a video clip on Kah Chun’s father praying to Buddha to bless Kah Chun with a healthy body. Kah Chun turned teary when he realized how much his father loves him.

“What if we were to switch role? Would I do what my father had done? Could I do that? I could never repay my father’s love. I hope to get my prosthetic leg as soon as possible, and to be able to walk and be independent again, so that my father need not worry about me.” Kah Chun said to all present.

He also thanked Saw Tin and Mun Fei for making him realize that he is not the least fortunate person. He also wished to share his personal experiences with more people, especially the young people, so that they are more health-conscious and cherish their lives.

Kah Chun’s sharing touched the medical professionals who have been caring for him. Dr Lau, Dr Tan and nurse, Cho Jinq Yyu, offered him their words of encouragement and well wishes.

Dr Tan was grateful to see the change in Kah Chun. She was worried about how Kah Chun could cope losing both of his lower limbs.

In her sharing, Dr Tan informed that both of them have faced a totally difficult world although they were of the same age. She has learnt about courage from Kah Chun, and she was grateful for being able to help him with his wound. The love and companionship from volunteers have also lessened Kah Chun’s emotional pain and motivated him to live on.

At the thanksgiving event, volunteers also performed some songs accompanied by ukuleles to offer their blessings to Kah Chun. To thank everyone present, Kah Chun presented to each of them a small bottle containing some saga seeds.

When volunteers presented a cake to Kah Chun, he said that given a second chance, he would not make the same mistakes. He longed for a healthy body and a happy life, where he could pursue his dreams.

“My dream is simple. I only wished to get married and have children, travel around the world, enjoy good food and lead a carefree life. But now, it seems impossible to achieve. So I only wish that I could inspire the young people to cherish their lives by sharing my experiences with them.” Kah Chun knows that he could not turn back time, but to face his future with courage.

Note: Calciphylaxis is a serious, uncommon disease in which calcium accumulates in small blood vessels of the fat and skin tissues, causing blood clots, painful skin ulcers and may cause serious infections that can lead to death.

 

TIMA doctor, Lau Li Lian (in white shirt) and Yip Sook Ying (1st right) visited Lee Kah Chun and helped to clean his wound in the company of volunteer, Ong Saw Tin (2nd right). [Photograph by Yong Mun Fei]   Yip Sook Ying examining Lee Kah Chun’s wound. [Photograph by Yong Mun Fei]

TIMA doctor, Lau Li Lian (in white shirt) and Yip Sook Ying (1st right) visited Lee Kah Chun and helped to clean his wound in the company of volunteer, Ong Saw Tin (2nd right). [Photograph by Yong Mun Fei]
 
Yip Sook Ying examining Lee Kah Chun’s wound. [Photograph by Yong Mun Fei]
 
For Lee Kah Chun’s comfort, volunteers, Ong Saw Tin (right) and Tai Ah Lien delivered an adjustable hospital bed to him. [Photograph by Yong Mun Fei]   Lee Kah Chun filled the small bottles with saga seeds as tokens of appreciation to the volunteers and medical professionals who have been caring for him. [Photograph by Yong Mun Fei]

For Lee Kah Chun’s comfort, volunteers, Ong Saw Tin (right) and Tai Ah Lien delivered an adjustable hospital bed to him. [Photograph by Yong Mun Fei]
 
 
Lee Kah Chun filled the small bottles with saga seeds as tokens of appreciation to the volunteers and medical professionals who have been caring for him. [Photograph by Yong Mun Fei]
 
Volunteer Yong Mun Fei (left) is like an elder brother to Lee Kah Chun. [Photograph by Woo Yoke Bee]
  TIMA doctor Tan Pui Sen (right) was touched by the care and love volunteers showered on Lee Kah Chun (middle). [Photograph by Woo Yoke Bee]

Volunteer Yong Mun Fei (left) is like an elder brother to Lee Kah Chun. [Photograph by Woo Yoke Bee]
 
 
TIMA doctor Tan Pui Sen (right) was touched by the care and love volunteers showered on Lee Kah Chun (middle). [Photograph by Woo Yoke Bee]
 
Accompanied by volunteer Ong Saw Tin (middle), Lee Kah Chun expressed his love to his father (left). [Photograph by Woo Yoke Bee]  

Accompanied by volunteer Ong Saw Tin (middle), Lee Kah Chun expressed his love to his father (left). [Photograph by Woo Yoke Bee]