Patient Story – Chris

Chris was formally a full-time GP but seven years ago he was diagnosed with bi-lateral phrenic nerve palsy – the phrenic nerve essentially, controls the diaphragm – the bellows for the lungs – and when the nerve stops working, patients will have difficulty breathing. If there is enough movement on one side, a patient may be able to breath adequately but in Chris’s case both nerves turned off individually several months apart. This presented as a catastrophic incident and, while Chris subsequently slowly regained function in one side, it has completely changed his life.

Now retired, Chris lives in idyllic Ellingham, near Alnwick in Northumberland with his wife Jane and black Labrador Ellie. The couple have two grown-up children.

In 2013, following a triple heart bypass, Chris was diligently following a rehabilitation programme. He had taken up swimming as part of this programme but on 4th December 2013, he found that instead of his usual 40 lengths, he suddenly could barely manage two before becoming out of breath, and separately had discomfort breathing when doing tasks such as bending down or picking up objects with two hands.

He was committed to his rehabilitation so took up cycling instead. All was fine until he and his wife were on holiday in the early summer of 2014 and swam off a beach. His wife had to save him from drowning. This was very perplexing and frightening but as soon as he got out of the water, he was fine again.

On 9th September, he suffered a “catastrophic” episode while on holiday again, experiencing sudden choking and persistent loss of breath. On their return to Northumberland, Chris saw a cardiologist, a respiratory physician, and a neurologist, and was finally referred to the HMV team. He left the hospital that day with a machine.

His condition means that when horizontal, he stops breathing so the machine allows him to recline. The night he brought his HMV machine home, Chris slept peacefully for the first time since his problems had begun. He recalls that his initial breath on HMV felt a wonderful relief as it was the first time he’d been able to breathe properly for 3 weeks. Using HMV he slept peacefully for eight hours and woke up feeling refreshed.

It wasn’t all plain-sailing, Chris took a while to get over some teething problems and to become used to the machine breathing for him.

Now Chris uses the machine all night, every night and it has become part of his life.

He says: “The experience of using HMV is quite hypnotic and relaxing so I “go with the flow” and adjust to the rhythm of the machine rather than fighting it.”

His wife Jane is much more aware of the alarms and noises made by the machine so ironically Chris now has better sleep than she does.

The couple’s advice is that it’s important to ensure that carers get sufficient sleep and rest. It’s better for a carer to be refreshed and in good condition to help, so it is essential to get a good night’s sleep, even if it’s in a different room.

Jane has been involved in every stage of Chris’s treatment and they regularly go to appointments together. As a carer it’s as important to come to terms with your partner’s condition and treatment, as the machine becomes part of both of your lives.

Chris and Jane have found that, outside of the pandemic at least, they are able to travel with the machine, including foreign travel.

Chris says:

“I would suggest that you travel with two machines, in case one fails, and take spares of everything. Ask and your HMV team will provide you with letters detailing why you need a machine, and machine technical data sheet. Contact and send copies to the airline special assistance team after booking. We have found that they are very helpful offering support and allowing preferential access the plane so you can store your equipment close by in case it is required during the flight.”

In the intervening years, one of Chris’s phrenic nerves has very slowly started working again and this has allowed him a better balance of daily life, but he still needs to use the HMV machine every night.

He concludes: “The machine is very easy to use – the first breath was memorable and absolutely wonderful! I’m as active as I can be but have had to come to terms with my disability. I can walk and exercise, but I have to make sure that I stop to recover when I try too hard and “hit the breathing wall”.

“If you have a condition like mine, or COPD, the machine won’t alter the course of your disease, but it will hopefully ease symptoms. Listen to the medical professions suggestions as they want to make your life better, not to do harm.

“Try not to fear dependence upon the machine. HMV is intended to keep you out of hospital and help you retain your independence so if you can adapt to it, it will make you feel better and ultimately improve the quality of your life.