June 13, 2017

Bill’s story – Idiopathic Pulmonary Fibrosis (IPF) a life changer

My name is Bill Van Nierop, and I have Idiopathic Pulmonary Fibrosis or IPF to those of us ‘in the trade’ so to speak. I was originally diagnosed with potential IPF on the 13th March 2015, when some indicators were noticed on an X-Ray and subsequent CT scan I’d had to ensure a bout of pneumonia had cleared up

In my case, confirmation of the likely presence of early stage IPF was a little more scary initially, as my older sister had been through what was then called Interstitial Lung Disorder, which I’m guessing is very similar. This meant I was aware of disease progression.

After a few interesting weeks, and an open lung biopsy, coincidently done on April Fools Day, my lung physician confirmed the presence of early stage IPF. The diagnosis did still take the wind out of my sails, for a number of reasons. 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.

It also was a bit of a shock for the family, with reactions predicated by having 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, which I believe to have been a mistake, as support is so key, particularly in those early days. 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 in terms of reaction with the immediate reaction almost inevitably “guess you’re a smoker then”, or “I thought lung diseases were really about older people, how old are you?” Really!

As a result of being diagnosed by coincidence, and at such an early stage, I was provided the drug Nintedanib©, which can slow the progression of IPF by up to 50%, which was the first real encouragement since diagnosis.

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 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 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 have launched my ‘Long Walk for Lungs’ walking 697kms (sounds better than 700Kms!), through central NSW to raise awareness in rural areas of lung disease, the need for lung health as part of normal health checks, raise awareness of IPF specifically, tackle the stigma of lung disease head on,  and raise much needed funding for research.

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% about what happens to you, and 90% how you respond”. Long walk for Lungs is my response, and although a challenging distance, I am inspired by a gentlemen called Russell Winwood who recently completed the London marathon with advanced COPD. I’ve only got to walk for 15 days. Like you, I know “when you can’t breathe….nothing else matters”.