Graphic artist wants change to Trinidad and Tobago’s organ donor system

Even as Anderson Mitchell of Chase Village fights for his life, he is also determined to help save the lives of others.

The 42-year-old graphic designer is trying to raise $500,000 quickly to get to Kauvery Hospital, Chennai, India, for a kidney transplant.

The procedure can be done in India affordably, he said. He has raised $100,000 so far.

In 2012, Mitchell, then a capoeira instructor and Latin dancer, was diagnosed with focal segmental glomerulosclerosis, a rare kidney disease which causes scarring in the glomeruli – the tiny network of blood vessels that are the cleaning units of the kidney.

Nephrologist Dr Shaun Lynch manages Mitchell’s condition.

“He actually predicted every part of my diagnosis. When I was diagnosed, Dr Lynch told me this is not a good diagnosis. He said that things are going to get worse and worse and I am eventually going to need a transplant,” Mitchell said.

He was first put on steroids to slow the disease’s progression, but in four years his kidney function deteriorated to the point where he needed dialysis.

Mitchell was tired more, and this created a big lifestyle change for him. He used to go to the gym four times a week and did martial arts. Now, he can barely climb a flight of stairs.

He had haemodialysis, which filters waste and excess fluid from the blood when the kidneys no longer work properly.

But it took a toll on his body and he started to get infections. He was hospitalised for about four months in 2017 because of a major infection that his doctor described as the worst he had ever seen.

“I thought I was going to die." He survived, but had to learn to endure another form of treatment.

"As soon as the infection was fixed, Dr Lynch said he needed to put me on peritoneal dialysis.”

Peritoneal dialysis uses the lining of the abdomen to filter blood. It requires fewer restrictions on diet and fluid intake than haemodialysis.

Mitchell said kidney failure has other effects which damage organs and cause hypertension and other health problems.

“I think I was very fortunate because my kidney failure did not occur because of diabetes.”

A large number of people with renal failure also suffer from diabetes.

“It made it a little bit harder for them. I had it a little bit easier, in that my diet didn’t go totally haywire and all of that. But I still suffered a lot of the trials that most people who have kidney failure do.

“One of the main ones was a loss of energy.”

This resulted in Mitchell's having to stay home a lot. He developed a fear of water, because when his catheter got wet, it caused a bacterial infection.

“I went from being an incredibly active person to just being someone who is unable to work the way I used to.

"I used to work eight hours a day. Now if I work about four hours a day, I am usually tired by the end of it.

“I don’t eat the way that I used to. I lost a lot of weight. I went into the hospital at 230 lbs and came out of the hospital at 160 lbs. That was a drastic decrease in weight and it was mostly muscle."

Hence his fundraising efforts.

Lynch told him that, because his illness is an autoimmune disease, he did not want to do a transplant too soon, but wanted the disease to run its course. Lynch wanted to be sure the disease did not attack the transplant and waste a kidney.

“At that time, before the pandemic, the organ transplant unit at Mt Hope (Eric Williams Medical Sciences Complex) was doing deceased-donor transplants, which is fantastic,” he said.

He heard stories of two lives being saved by one deceased donor.

“I thought I would be part of this programme.

"However, the pandemic (covid 19) hit and, for obvious reasons, they stopped using deceased donors.” This was in case it transpired the donor had died of covid.

The Ministry of Health’s website says the country’s donor programme began in January 2006 and there were 95 kidney transplants, 92 from live donors and three from deceased donors. Newsday could not ascertain if this was current data.

Mitchell was then told the only way a transplant could be done was if he brought a donor – and that was a lot easier said than done. He has a sister, but she is ineligible, and he does not have a lot of family to rely on. His parents are dead.

He found three potential donors, but their family and friends dissuaded them.

“I spent an awful amount of money testing them, because I wanted to do things rapidly so I could get the transplant quickly. I tested them in the private system, I spent tens of thousands of dollars – and sadly, because of the level of ignorance in Trinidad and Tobago, these people were discouraged."

He could not understand why: he said being a donor was not what it used to be, scars from the surgery were less than an inch long and donors were quickly discharged afterwards, sometimes within two days.

“They are able to recover their lives normally. If they work a desk job, they can go right back to work.”

More physical work might require a week or two, he said.

“But people don’t seem to get it. A lot of people may be healthy enough, perfect blood type, could probably be a match – but they are afraid."

As time goes on, Mitchell’s condition worsens and he will eventually be ineligible for a
transplant, possibly within weeks.

“Kidney failure damages your heart, lungs, and the longer you have it and the more you do dialysis, the more trauma it does to your body, and the more trauma it does to your body, the less chance you have of surviving the surgery.”

After peritoneal dialysis, he doesn't know what will be next for him. He said he has faced his mortality.

He views the absence of a deceased donors list as an injustice to all of TT.

“We used to have a deceased-donor transplant list; why hasn’t it been restarted? More and more people are just dying."

Asked if he had contacted the Ministry of Health or the minister, Terrence Deyalsingh, Mitchell said he had spoken to people in the Ministry of Local Government and was told there was not much they could do.

A donor here or in India was the only way he could get out of “this prison,” he said.

Mitchell said before the pandemic he met a 16-year-old girl who was coming to the dialysis ward at Mt Hope and he felt sad for her.

“She was just very bright-eyed, cheery and just hopeful. One day, she sat down, did dialysis and one of the nurses told me she was getting a transplant.”

Mitchell said that was amazing, and that was what a deceased-donor transplant list does: gives people like that girl a new chance at life – but without such a list, that can’t happen any more.

He believes there should be a change to the way donors are registered and the UK model of being automatically opted in should be looked at. That system assumes that people consent to having their organs donated after death unless they or their family say otherwise.

“I don’t think it is an injustice to me, I think it is an injustice to the entire country.

"We should be investing in these things. I don’t know what is preventing it from happening."

Donations on behalf of Anderson Mitchell can be made to the GoFundMe account at https://www.gofundme.com/f/kidney-for-anderson or chequing account no 290801255301 at Republic Bank Ltd, Tragarete Road, Port of Spain.