When the Muhammadiyah Association announced its support for a proposed law to allow Muslims to become automatic kidney pledgers, kidney patients waiting for a transplant have come closer to a new avenue of hope. Faith Chang of HealthAnswers discovers how precious that hope is to a 14-year-old who waited six years to have a new kidney, and a new life.
Life After A Transplant
If a person's facial appearance and physique has the ability of giving away what is really happening inside someone's body and mind, then Jonathan Koh's would be the perfect example.
The 14-year-old's body looks like it belongs to a child of six years and his behaviour reminds one of a ten-year-old. But there is something different about his eyes; they hinted at someone who has fought a hard battle all his life. The fight is over now, at least for the meantime.
Jonathan has had kidney disease; since eight months old and was diagnosed with kidney failure since age seven. When he heard that he was going to get a new kidney in April last year, it felt like it was the best present he was ever going to receive.
"He was so happy and excited that he shivered," his mother, Peggy Lim said. It was a promise of a new life, a chance at normalcy he's been denied for half his life.
Before the transplant, Jonathan had to undergo between ten and 12 hours of daily dialysis at home.
The treatment and the symptoms of kidney failure plagued him.
Jonathan was always tired, especially after school, which made him hot-tempered. He also had difficulty concentrating in his studies. Jonathan is two years behind the grade he's supposed to be at because of the intensive treatment and visits to the hospital in the past. As a result, the boy who ought to be in Secondary Two this year is only in Primary Six. Because he felt so exhausted all the time, it was not easy on his parents.
But he is not allowing that to stand in his way of going to secondary school, as he chatters away happily on his plans for the future.
"I now have better concentration when studying as I'm not as tired as before when I was on dialysis. And I am not so short-tempered."
"Before my transplant, when I went out, I had to be home before seven in the evening as I had to be hooked up to the dialysis machine. I wanted to stay out later, I wanted to play with my cousins longer at their home, but this was not possible! It is different now. I don't have to rush home anymore, I can even sleep over at my cousin's home!"
A new kidney has also given Jonathan a new independence. He now goes and returns from school alone and goes shopping with his schoolmates without his mother. "I am now a normal child. I feel more positive and happy and I can jump around at home when I want to!"
The transplant has also changed his appetite. He didn't use to eat lunch but now does.
Says his mother: "He feels that he is mentally stronger. He is in better control of his anger and keeps it in check and is not as dependent on me. He smiles all the time now."
The gift of a kidney has in turned gave him many first time opportunities, including a chance to travel. Last December, Jonathan travelled overseas for the first time to Bangkok. Unfortunately, he had fever while he was there, a normal occurrence as his body was still weak having recently underwent a kidney transplant.
Jonathan is not the first child in the family to be stricken with kidney disease. He had an older brother who died from it.
As Jonathan suffered from nephritic syndrome and tubulopathy , a kind of kidney disorder, when he was only eight months old, the same disease claimed his elder's brother's life at 21 months.
"When Jonathan fell sick then, and I realised that his feet was swollen," recalls his mother. "I knew he had the same problems as my oldest child. The symptoms were the same." She says it with a directness that hits one with the painful realisation that she has been through the same pain twice.
And she has taken all that in her stride as she picked up the pieces after her first child died. Caring for a child with kidney failure means special attention has to be paid to Jonathan's diet. Food with low salt, potassium, phosphate but high in protein, vitamins and iron is vital in keeping Jonathan healthy. And Madam Lim is assiduous about it.
She also has to constantly explain to people why her son looks younger than he actually does. Jonathan suffers from renal rickets, which has resulted in his small frame and slow growth. In addition, kidney failure also means that his body is less sensitive to the effects of the growth hormone.
"New friends and strangers also asked him why he was so small in size in the past.
So, a kidney transplant is really good news to him as it means the body can now produce the hormone to encourage growth," Mdm Lim said.
But things have changed for the better since he got a new kidney. Jonathan is no longer held captive to the dialysis machine, and the entire family can go out for more family outings together.
Although Jonathan's previous condition did not able him to take part in vigorous activities, his mother sees to it that he attends the annual camp for children suffering from kidney diseases organised by Club Rainbow.
Against All Odds
Having waited for a kidney for six years since he was first diagnosed with kidney failure in 1993, Jonathan now has a new attitude towards life. The fighting spirit in him is strong.
You can see how he takes charge of his life by way in his willingness to take part in physical activities in school. Jonathan makes sure he is disciplined in taking his medication. He has learned to carry the ten types of medication he takes a day everywhere he goes, and memorises the four daily schedules for the intake of the pills.
Although the kidney transplant had in many ways contributed to Jonathan's and his parent's happiness, it is no guarantee that all is well from now on. And both he and his family are fully aware of that.
There was still a chance of the new kidney failing as Jonathan suffers from a blood disorder, meaning his blood may again attack his kidneys.
Ask Mdm Lim if she was ecstatic when Jonathan had the chance to lead a normal life with the gift of a new kidney, she is surprisingly cautious: "A kidney transplant is not a guarantee that everything is well."
"Of course, this is good news for Jonathan. But I live by the day and hope for the best."
But her son is not wasting time hoping.
He has taken the matters to his own hands and participated in the Big Walk just last Sunday. The event was part of the National Kidney Foundation's Multi-Organ Donation Development contingent. Jonathan's purpose of participation was simple: to create awareness for other kidney sufferers. Who better to do this than Jonathan, who wants to fulfill all the promises a new kidney can bring.
Date reviewed: 26 May 2000