x Abu Dhabi, UAEWednesday 26 July 2017

Sick father begs for chance ‘to fight for my life’

Long-suffering father says lack of progress on legal amendment means he has been unable to receive kidney transplant that could prolong his life.

Rhoniel Romano, right, spends time with his wife Jocelyn and their sons Atreyu, 10, and Noah, 5.
Rhoniel Romano, right, spends time with his wife Jocelyn and their sons Atreyu, 10, and Noah, 5.

ABU DHABI //Rhoniel Romano needs a new kidney, but has no idea how to go about finding one.

The 39-year-old Filipino has only his wife, Jocelyn, with him in the country. He has not had a kidney transplant in the UAE, however, because the law only allows transplants from living donors.

A 2010 amendment to the 1993 organ transplant law paved the way for organ transplants from deceased donors. Doctors and patients had renewed hope that cadaver transplants were just around the corner for the UAE. However, a year later there has been no progress, leaving Mr Romano out of luck – and out of time.

“I have been living with kidney failure for years, and I thought that I could continue this way,” he said. “But this is not a way to live, and I need help.”

Mr Romano moved to Abu Dhabi with his wife in 2002, and has been working as an office assistant for an engineering company for nine years.

But in 2004, his life irrevocably changed. A severe headache and constant vomiting landed him in the hospital, and he was diagnosed with chronic kidney failure, a result of untreated high blood pressure.

“In the Philippines, when I was 20, I was told I had high blood pressure and that I was hypertensive, like my father was before he died,” said Mr Romano, whose brother also died of complications from high blood pressure.

“I didn’t really know what that meant or understand that it was a problem; buying medication for high blood pressure was so expensive and I felt fine and healthy and young. I didn’t think I needed it,” he said.

Mr Romano attributed his carelessness towards his health as a “lack of finances and lack of knowledge”.

“I wish I didn’t ignore my health,” he said. “I had no idea that blood pressure could affect my kidney. I never thought I could never run again, or play basketball.”

In 2004, Mr Romano spent more than four weeks on haemodialysis at Sheikh Khalifa Medical City (SKMC), then known as Central Hospital. When his condition stabilised, he was able to go home, where he received peritoneal dialysis, a type of dialysis that can be done at home via a small machine, provided by SKMC.

He had to be on the peritoneal dialysis machine for 10 hours every day from 2004 until this year, which meant he could only visit his children in the Philippines every two or three years. Travelling with all his medical equipment was costly and difficult.

In February, Mr Romano was admitted to SKMC with peritonitis, an inflammation of the tissue that lines the abdomen wall. Peritoneal dialysis patients are also predisposed to infections.

He spent two months at the hospital, and was diagnosed with end-stage renal failure. A transplant, his doctors told him, was imperative. SKMC declined to comment on Mr Romano’s condition.

“I am back to doing haemodialysis in the hospital, for four hours a day every other day,” he said. Dialysis, which artificially filters the blood, is crucial for his survival and his only alternative to a transplant.

Mr Romano’s sons, Apreyu, 10, and Noah, five, have been visiting him in Abu Dhabi for the past month. He dreads his four-hour dialysis sessions after a long day at work, because they keep him from his children, whom he had last seen three years ago.

“My company surprised me and brought the boys over to visit us, during their school holiday, and paid for their tickets and visa,” he said. “My little boy did not even know me when he saw me in the airport, and didn’t talk to me at first. But it has been the happiest month of my life.”

Mrs Romano, 33, said her husband would not allow her to donate one of her kidneys, and she did not even know if she was a match.

“He said we have two kids to feed, and it is enough that he has been suffering all these years. I have to be able to take care of our children if anything happens to him.

“I think our only hope is to find the finances to go to the Philippines and have his family there tested and get a kidney there,” she said.

Their current situation, however, does not allow the couple to entertain any hope.

“We cannot afford to go to the Philippines because first of all I need the dialysis and once we are there, it will cost money to do all the tests to find a kidney,” said Mr Romano.

He said that friends and relatives in the Philippines had agreed to be tested to see if they were a match, and he also had the option of going on the Philippines Renal Registry. In June last year, the Philippines established the country’s first national organ-donor register, so Mr Romano thinks he may have a better chance in his home country.

“My kids will leave [tonight] and I don’t know when I will see them again,” he said.

“I hope someone with a big heart can help us, so I can see my children grow up. I want the chance to fight for my life.”

hkhalaf@thenational.ae

 

Patient options slim in the UAE

Patients with end-stage renal failure have only two options: dialysis or a transplant.

Kidney transplants from living donors are characterised as genetically related or non-related transplants.

Dr Mohammed al Zaabi, a liver transplant specialist at Zayed Military Hospital in Abu Dhabi and a member of the National Organ Transplant Committee, said finding a match between donor and recipient was not easy.

“Tissue compatibility tests must be conducted, the blood groups have to match. Things like age and health have to be taken into consideration,” he said.

“Because we are fighting organ trafficking, here in the UAE we accept patients who have an emotional bond with the donor, and not only a genetic bond, so we consider the spouse or the in-laws.”

* Hala Khalaf