Bill’s story

Idiopathic Pulmonary Fibrosis, Interstitial Lung Disease, Pulmonary Fibrosis

My wife and I try and live by an attitude that says, “what we have experienced or experiencing does impact on our lives, but it will not impact how we live our lives.”

My name is Bill Van Nierop, and I have Idiopathic Pulmonary Fibrosis (IPF), a progressive and incurable lung disease that causes scarring of the lungs, making it difficult to breathe. My doctor originally suspected I had IPF in March 2015, when some indicators were noticed on an X-ray and subsequent CT scan I was having to check a bout of pneumonia had cleared up.

Confirmation of the presence of early stage IPF was a little scary initially, as my older sister had been diagnosed with Interstitial Lung Disorder so  I was aware of disease progression.

After a few interesting weeks, and an open lung biopsy, coincidently done on April Fools Day, my physician confirmed I had early stage IPF. Hearing this, did still take the wind out of my sails for a number of reasons. Firstly, because my wife Lesley had just come through eight months of treatment for ovarian cancer, and we were in the process of being grateful that all went well, and she was in remission, and still is thankfully.

Secondly, it was also a bit of a shock for my children, as they had watched my sister, their Aunt, go through something like this several years earlier, at a time when little could be done. I didn’t tell a lot of friends, as I’d decided to have this fight privately.

In hindsight this was a mistake as support is key, particularly in the early days. The decision to initially take up the fight privately was driven largely by the initial reactions I encountered, the lack of information available, the apparent acceptance that the disease was both chronic and basically ‘terminal’ with few options, and the resulting lack of empathy experienced. As a result, I discovered that you can easily become consumed with the outcome rather than the journey, and what is not possible rather than what is.

This is when I first experienced the stigma attached to lung disease.

When I did start to tell people I had IPF, and explained what it was, their immediate reaction was almost inevitably, “I guess you’re a smoker then” or “I thought lung diseases were really about older people, how old are you?” I found this quite difficult to rationalise initially, as the apparent inferences were clearly that that my disease was either obviously my fault from earlier life choices, or something I should accept as an unfortunate aspect of the aging process.

These reactions and thoughts also contributed to my decision to confront IPF in a private manner, as in the early stages of coming to terms with a disease such as this, lack of empathy can leave you feeling as though it is really you vs the world.

I can only assume that in some cases, patients following diagnosis may well experience some challenges to their mental well-being.

As a result of being diagnosed by coincidence, and at such an early stage, I was able to start taking a drug, Nintedanib©, which aims to slow the progression of IPF by up to 50 per cent, which was the first real I had experienced encouragement since I was diagnosed.

At this point I decided that I had IPF, (no surprise you’re saying) and the only option was to accept that, and then seek all the information I could to develop a plan to tackle this imposition on my life.

Discussions with my respiratory physician, breathing tests, and countless hours online convinced me that anecdotally at least, that everyone who had slowed this thing down did so through whatever levels of exercise they could manage, a reasonable diet, and a huge dose of pragmatism and positivity. As a result, I started exercising daily, and let me tell you walking at 0° in Dubbo and Wagga does test your pragmatism and positivity.

The downside for me has been the side effects that go with slowing the disease via medication, with nausea striking inconsistently, along with need to always understand where the nearest convenience is. I train people in my job, and facilitate meetings and standard practice is, ‘don’t get between me and the doors’.

I guess what I do struggle with is the fatigue that seems to accompany IPF (and maybe a little influence from medication as well), but I accept that and work my life around it. We still travel, eat out, and I work, just not at night.

I think the side effects can take a toll on the mental side, as can be quite physically draining, but I have maintained my role and exercise despite them, and touch wood, seem to get through long walks ok.

My wife and I try and live by an attitude that says, “what we have experienced or experiencing does impact on our lives, but it will not impact how we live our lives.”

Whilst I had taken IPF on privately in the first instance, I decided after encountering lack of public awareness, lack of public understanding and the ongoing battle with the stigma of lung disease, to tackle this publicly.

This year, I completed the Long Walk for Lungs – a 697km walk (sounds better than 700Kms!), through central NSW to raise awareness of lung disease and IPF, the importance of lung health as part of health checks, tackle the stigma of lung disease head on, and raise $100,000 for research into IPF.

Who knows what research may provide for us in the years ahead, and my objective is to take every step I can to ensure best chance at new technology with IPF, or at least ensure those that come behind will have a better chance.

You see, I once heard someone say, “Life is 10 per cent about what happens to you, and 90 per cent how you respond.” Long walk for Lungs was my response, and although it was a challenging distance, I successfully made it the full 697km with family, friends and colleagues by my side.

We need to get the Australian community prepared to have the conversation about lung disease. There are a lot of misconceptions, community awareness is low, community understanding is even lower and community attitude is terrible.

Don’t look at me as someone who bought it on myself, look at me as someone who has the disease and would like to have the conversation.

Sharing your personal experience with lung disease is a compelling and inspiring way for others to learn about and cope with their diagnosis. Your story may also encourage people to identify and act on symptoms they are experiencing, which may otherwise have been ignored.

Share your story, here.