No-Fear-Cushings

by Peter Cernik. SAC Dip, M.A

Jordy’s story starts way back in the late 1990s, he had been working very successfully within the television industry for the likes of GMTV and Fox kids Television. He was gaining great momentum as a presenter, working regularly as a TV warm up man and heading towards a career in front of the camera. But unlike most fairytales, this story is still waiting for its happy ever after.

Just as Jordy was thinking his career was about to take off, he started to gain weight which in the world of television is not good. Countless times he went to his doctor to get help, just to be constantly told to go on a diet and exercise. At times this became an obsession to him, trying every diet on the market and training up to 7 times a week. The battle between his career and his weight would soon come to an end and unfortunately Cushing’s syndrome would win

Jumping forwards to 2006, Jordy had married his long-term girlfriend and together they had happily brought their first daughter into the world. Now for most people this would be a time of great happiness, but for Jordy it just brought frustration and sadness. Every time he would pick up his daughter and hold her like all fathers do, his body would produce overwhelming amounts of perspiration leaving himself and his daughter dripping with sweat.

Finally at breaking point he returned to his doctors one last time, but unlike all his other visits this time his normal doctor was off. Instead he was shown into a room to be greeted by Dr Curry, a junior doctor who had recently just qualified. After hearing all of Jordy’s symptoms, she did something that no other doctor had done till that point, she actually examined him. She first checked his arms and his legs, then without really explaining to him what she thought was going on, she requested a blood test. For the first time Jordy felt that somebody understood and wanted to help.  Not long after Jordy was asked to go and visit Dr. Wahid, a specialist in neurology at South Tyneside Hospital, more tests were carried out along with further hospital visits to the RVI, Newcastle. Eventually, this concluded in the diagnosis of the rare condition, Cushing’s Syndrome.  

Medication was started and more tests completed before finally they came back to Jordy with a solution, they were to remove the pituitary gland in what was described as a straightforward operation. This operation was to be carried out by Dr Carrie, an ear, nose and throat specialist based at the Freeman Hospital. So in 2006 Jordy went in for his first major operation, but due to complications, they had to be stop.  here was too much bleeding. It was then decided that they would wait and let Jordy’s brain recover before trying again.

In late 2006, a second operation was performed, this time the doctors were more enthusiastic about the results. They explained that they were able to remove some of the pituitary gland and hoped this would control the amount of cortisol Jordy’s body was creating. Soon after he had recovered, they started testing again to find out if the operation had been successful. But news came back that Cushing’s syndrome was still very much present and his cortisol levels still high.

By the start of 2008 new options were brought forwards and the talk of a new approach was given. It was advised that Jordy should have a full adrenalectomy, which would mean keyhole surgery to remove his adrenals and stop the flow of adrenalin that powered the pituitary gland. This would be done simply by inserting two rods into Jordy’s stomach, then fully removing the adrenals. This time the operation would be carried out at the RVI hospital by another specialist, Dr Bliss. The operation went smoothly and things looked very positive from the out start. Jordy began to lose weight and it was obvious that something had changed within his body.

It was at this point that Jordy’s specialists suggested that he have plastic surgery. Due to the buildup of fat around his chest, it was advised that he should have liposculpture with a tummy tuck set to go ahead in the future to rebuild his body.

The operation went ahead and Jordy had his first round of liposculpture, but unfortunately this was short lived. It was discovered that during the adrenal operation, Dr Bliss had missed a piece of adrenal on his left side which had started to regrow.

Then in 2009 Jordy was given two options, the first would be to have a full open left-sided adrenalectomy. This would mean that Dr Bliss would open Jordy’s left side up, remove a rib and enter through Jordy’s intestines and lung to remove the growing adrenal. This would be a painful procedure and would mean Jordy would be out of commission for a number of weeks. He was also told that Dr. Carrie was also confident due to new scans, that he could remove the pituitary gland once and for all. This was a more straightforward operation like the ones he had had before, and were clearly less painful. Like most people in his shoes, Jordy decided to have the pituitary removed with the new scans.

Jordy went into hospital on the Monday morning, had the operation on the Tuesday and was released Friday. Things had apparently gone well and Jordy was in good health as he headed home. By the end of Saturday, Jordy had started to notice a slight headache and a runny nose, but as it was November and very cold outside, he just put it down to the weather. Sunday came and things just seem to get worse, it was obvious not just to Jordy, but also his wife that things weren’t quite right. It wasn’t till Monday morning when things really started to get serious, Jordy was unable to get out of bed, his head felt heavy and he experienced the worst pains he had ever had in his life. He was rushed back into the Freeman Hospital to be seen by one of Dr Carrie’s department doctors. Within an hour Jordy had been diagnosed with cranial fluid leak. This meant that the liquid inside Jordy’s skull that protects his brain, had leaked out through a small hole from the previous operation and out through his nose and ears. At this point the doctors didn’t seem too concerned and arranged for Jordy to spend the night and be operated on the next day. Jordy was given some painkillers, settled into bed and he slept for the rest of the day.

It was late in the evening when he woke to find nurses and doctors swarming round his bed. His chest felt as if an elephant was sitting on him and he couldn’t catch his breath properly. The hospital seem to go into panic mode as the fear of bird flu spread between the nurses. Gowns and masks were put on, Jordy was wheeled to an isolation room and tested began. As the early morning approached it was finally discovered that Jordy was suffering from serious pneumonia, due to the liquid from his brain entering his chest. Now normally pneumonia is treated with pure oxygen which is administrated to a patient through a facial mask. But in Jordy’s case, if he had worn the mask air would have got to his brain and he would have died. This left the doctors with only one option, they would have to put him on to life support and feed the oxygen straight into his lungs. His wife was phoned, preparations were made and he finally said goodbye to her just before 8 AM on Tuesday morning.

During the next 4 ½ days, Jordy would struggle with the medications and doctors would worry about his condition. It was during this time that doctors reported that Jordy had had a cardiac arrest while under sedation, and also due to complications Jordy had to have the tube that was down his throat removed on the last day due to stress. Nearly a full week had gone by while Jordy lay unconscious, but things weren’t going to get any better, soon the doctors were performing more tests and brain scans. It was during one of these tests that Jordy complained about the light and the stiffness in his neck. He had only been off life-support for one day, when the doctors told him that there was a black spot on his brain which was meningitis. So within hours, one crisis had turned into another one. But like all the problems previously, Jordy and his family ploughed on. 

Finally after another week of heavy medication to eradicate the meningitis, Jordy was allowed home. But the Cushing’s was still there and he knew very soon he would have to face another operation.

As 2010 came around Jordy faced his final operation, the very painful full left side adrenalectomy which he had been given the opportunity to have the year before. Dr Bliss once again took the reins and the operation went ahead, and once again complications arose. As Jordy woke up in the ICU, he felt a strange tube coming from his chest. During the complicated operation Jordy’s lung had been punctured and the tube was there to remove the blood and help it heal.

Finally in 2010 Jordy had finally been able to get his Cushing’s syndrome under control, but there would be still operations to come. Jordy had to go through a second round of liposculpture to his chest, but this time the plastic surgeon also removed skin and fat deposits. Dr Carrie performed rhinoplasty to rebuild Jordy’s nose due to the septum disintegrating from the amount of operations performed. And as for the tummy tuck to remove the fat around his stomach, but due to government cuts, the NHS no longer funded these types of operations. So for now Jordy lives constantly in a battle with leftover fat deposits that only surgery will shift.

And then there’s the fear or lack of it!

In 2012 Jordy and his family, now consisting of two girls after the birth of his second child in 2008, decided to celebrate his daughter’s birthday and the end of a long journey with Cushing’s, by taking a trip to Disneyland, Paris. It was during this trip that Jordy would discover that he seemed to no longer be able to feel fear. As he sat on one of the roller-coasters as it sped around the track, Jordy felt no reaction at all. He would mention this to his doctor the next time he spoke to him, but the doctor didn’t have an answer. It was not until 2013 when Jordy, now feeling a lot healthier and slimmer, decided to raise £2000 for a national children’s charity (Cash for kids), by completing free extreme tasks.

The first one was to zip wire from the top of the Tyne Bridge (84 foot above water) across to the Gateshead side next to the Baltic. As he sat connected to the zip wire with his legs dangling from the bridge into thin air, he felt no reaction to what others described as frightening. By this stage Jordy knew there was something wrong but he also knew that his next task would finally give him a definite answer. Two months later Jordy boarded a small plane filled with other parachutists, as he got ready to tandem skydive from 17,000 feet. As he sat on the plane slowly climbing higher and higher in a circle, with the plane creaking and making desperate noises, Jordy sat there calm, collective and most of all without fear. Even when the doors opened and he was sitting on the ledge of the plane ready to drop, he still felt nothing. Role after role, spin after spin then the parachute opened, but still Jordy felt relaxed and completely without fear. He was so relaxed that he even took over controlling the parachute down until they both reached solid ground.

Jordy could never get a true explanation from his doctors about why this had occurred, to the point where he felt that his doctors didn’t really believe him. So without any form of explanation, Jordy carried on for the next three years just battling to keep his Cushing’s under control.

During that same year Jordy also ran The Great North run to finish three challenges, and it was at this time that the daily Mirror newspaper wrote an article. It was this article that three years on the BBC would see and asked Jordy to take part in a new science program, and would finally give him the opportunity to test his ability to feel no fear.

In August 2016 Jordy took part in a unique experiment controlled by Dr Garfinkel of the University of Sussex, a specialist in fear and emotions. Throughout the experiment Dr Garfinkel monitored Jordy’s responses with electrodes and heart monitors. Jordy then descended down a 400 foot tower which in normal circumstances would have caused a reaction in any human being. It was then when Dr Garfinkel showed Jordy the results, he finally got the definite answer he had always wanted. The results showed that Jordy had no reaction at all (he flatlined the sensors), which astounded, not just the doctor, but production crew as well. This experiment showed a definite lack of emotion towards fear, which can only be explained by the lack of adrenalin and the complications within Jordy’s surgeries. This has somehow disconnected this emotion and others within Jordy’s brain functions.

Jordy is now working towards promoting Cushing’s to the bigger audience. Also looking at ways of using his television, radio and presenting knowledge, to create shows that explor his unique ability and others with in our world that live day-to-day with unsolved medical mysteries.

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