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Feature story: Living with IPF

15 March 2018

Idiopathic pulmonary fibrosis (IPF) is a condition which causes scars in the lungs and reduces the efficiency of breathing. The build-up of scar tissue is called fibrosis; this causes the lungs to become stiffer and lose their elasticity so they’re less able to inflate and take oxygen from the air.

IPF is a progressive condition and usually gets worse over time. In some people the symptoms gradually get worse over several years. For others, the symptoms get worse more quickly.

Jose Gonzalez.jpg
Jose Luis Gonzalez Nieto

Jose Luis Gonzalez Nieto, a patient who suffers from IPF, writes about his experience of living with IPF and how he became involved in research at Royal Brompton Hospital.

Life is not complicated, we make it complicated. We go through this journey called life trying to achieve objectives, enduring what life throws at us the best way we can, often taking things for granted. In many cases we pay little attention to the functions of our bodies necessary for everyday living, such as breathing, and usually it takes a problem or serious condition to make us realise the importance of being in good health. 

I didn’t look sick, nor did I really feel any severe symptoms associated with IPF. I just had some shortness of breath when climbing the stairs and some lower back pain, both of which I initially blamed on my lack of fitness and being 64 years of age. So I joined a local gym and began swimming at weekends. 

As the weeks passed the pain did not subside so I was referred to the local hospital for a CT scan of my waist and lower back. Although the result of the scan did not show any issues with my kidneys or spine, the radiologist did report some irregularity and inflammation at the base of my lungs. I was therefore referred to my local chest physician and after a few appointments I was diagnosed with IPF.  

I was dumbfounded. It’s so very distressing to have a lung disease. It’s natural to be shocked and distraught when you first hear the words. 

My wonderful wife attended most of the medical appointments with me and her love and support is always a huge help. Within an hour of receiving the diagnosis, she had found out that Royal Brompton Hospital is part of the largest specialist heart and lung centre in the UK, delivering world-class care, and we made an appointment for me to see one of their main consultants.  

From the first moment I visited Royal Brompton Hospital I felt I was in expert hands, and very soon afterwards I was receiving excellent advice on medication. My morale was boosted and by gaining a better understanding of the disease, I was able to start doing the best I could to take care of my health.

In addition to taking the medication I attended a pulmonary rehabilitation (PR) programme lasting a couple of months, which I found extremely beneficial as it helped me get fitter, lose some weight and set me on a path to exercising on a regular basis, which I continue to do. 

The programme included physical exercises to help me breathe better and education on how to stay healthy and active after completing the course. It was not just focused on patients with IPF, and the team of specialists set goals and monitored my heart rate, blood pressure and oxygen level so that I was able to exercise safely. They also provided advice on how to manage the symptoms of my condition and advice on the best diet.  

At the gym, where the PR took place, I met a group of patients who have become friends. We meet socially on a regular basis for a meal or coffee and we call ourselves Team Brompton!

Since my diagnosis I have made significant changes to my lifestyle, follow a healthy diet, adopted a routine of exercising every day (including three or four visits a week to the local gym to attend classes on pilates, tai chi and aqua aerobics) and I try my best to avoid colds and chest infections to keep myself as healthy as I possibly can.

The Interstitial Lung Disease (ILD) Patients Support Group, which meets every two months at the hospital, is an excellent opportunity to get advice on medication, oxygen therapy and healthy diets from consultants, specialist nurses and external experts. The meetings also provide an opportunity for patients to meet as a group and exchange information.  

The battle to beat IPF requires participation from us, the patients, in order to find an effective and definitive cure for this disease that is robbing us of our lives. Research is the key to finding this cure and we cannot afford to waste any time.

So far, I have enrolled in the PROFILE study and other projects, and I am considering joining other trials to help find a cure for IPF. Every patient who makes a contribution to research for finding the cure for this disease is taking another step towards reaching that objective, and we all want to get there as soon as possible.

If you would like to find out more about how you can get involved in research, either as a participant or as a lay reviewer, please email us. 

Royal Brompton

Sydney Street,
London SW3 6NP
Tel: +44 (0)20 7352 8121