Living with IPF and my MAC Clinical Research experience

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Leslie is 68 years old and is currently living with Idiopathic Pulmonary Fibrosis (IPF). He recently took part in a clinical trial at MAC Clinical Research in Merseyside and shared his experience on the trial with us.

Until 2020, Leslie worked as a lecturer at universities and colleges, teaching young people to get their PGCE qualification. During May of that year, he caught COVID and fell ill for around four months. He said: “I never really thought too much about it but then the cough started to get a bit worse, so I had more x-rays and the scarring had increased on my lungs.

“But it wasn’t until October 2021 that I received a diagnosis of idiopathic pulmonary fibrosis – scarring of the lungs which also affects the oxygen levels in my body.”

IPF is a condition wherein someone’s lungs become scarred and being able to breathe becomes increasingly difficult. Someone living with IPF will typically experience a shortness of breath as well as a persistent dry cough, these symptoms generally start gradually and worsen over time.

It is estimated that more than 30,000 people are living with IPF in the UK and there are 8000 new cases every year. The condition can be caused by a number of risk factors such as a family history of the condition, breathing in types of chemicals and particles in the air, smoking and viral infections; Leslie never had any symptoms of IPF prior to contracting COVID and had never smoked.

The persistent cough and fatigue are things that particularly interfere with Leslie’s day-to-day life. He said: “It’s been really difficult. My attitude is that you don’t give into something; it might not be the best, but you can do your best. It’s not that you fail, it’s that you fail to try.

“I’m finding it really difficult in a way with IPF particularly because of the fatigue levels which is not just being tired, it’s feeling drained, like you can’t do things.”

Despite this, he tries his best to stay healthy, visiting the gym around four times a week and allows himself rest days in-between when his symptoms may flare up.

Leslie found MAC Clinical Research’s trial purely by chance when he was researching his condition online. He had never taken part in a clinical trial prior to this and was somewhat hesitant before taking part. He said: “I think there was a bit of fear, because of those words ‘guinea pig’, that you don’t really know what’s happening. But I often think, where have all these cures ever come from?  I thought if it isn’t going to help me, it may help the people who come after.

“I wouldn’t want someone to go through what I’m going through so I thought maybe I could take part [in the clinical research] and maybe it would help people in the future.”

Leslie would travel to and from the Merseyside clinic with his wife Julie in taxis arranged and paid for by MAC.

One of the things Leslie particularly valued was the health check provided by MAC. When on a MAC clinical trial, doctors will carry out tests and monitor you, such as checking your blood pressure and conducting an ECG test, within which the findings will be fed back to your GP (other tests may be carried out, dependent on the study). Leslie said: “It’s not just being on the trial; it’s knowing that while you’re on the trial everything is being checked thoroughly on a continual level.

“Everything is done thoroughly, and everything is done with you in mind. [The MAC staff] are people who actually care about your health and wellbeing.”

Leslie spoke highly of the team at the Merseyside clinic. He said: “With the staff at MAC, superlative is not too strong of a word to use. From when you come in at the reception, and the domestic staff right through to the clinical staff and doctors – I don’t think it could be bettered. And that’s not an exaggeration. They’re like a family.

“Whatever fears you may have, as soon as you come, you are the most important person, the staff always have the time to explain everything to you in detail.”

Following his participation in the clinical trial and a reference from MAC to his doctors, Leslie was able to fast-track his participation in the NHS programme for Pulmonary Rehabilitation, which is helping him to better manage his IPF.

Leslie encourages others to register for MAC’s IPF clinical trial who are considering joining. He said: “It’s important that people are willing to come forward and it’s important for people to know that my experience with MAC has been one of positivity, one of hope and fulfilment in knowing that I’ve been looked after and been around people who genuinely care.”

Without clinical trial volunteers, no new treatments would be developed for health conditions. It’s vital that new treatments are developed for IPF. According to Asthma and Lung UK, without treatment, half of those living with IPF will sadly pass away within three years of diagnosis.

MAC Clinical Research is still looking for volunteers to participate in this clinical trial, testing a new investigational once a day tablet for the treatment of cough associated with IPF. If you are at least 40 years of age and have a persistent cough caused by IPF, MAC Clinical Research would like to hear from you.

If eligible, you can receive up to £610 plus travel expenses or transport reimbursed as well as a full health check-up.

The study is running at our clinics in Greater Manchester, West Yorkshire (Leeds), South Yorkshire, and Merseyside (Liverpool). To find out more and register your interest, you can visit our IPF research page.

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