My Story: Murray Walz

In this #TalkClinicalTrials blog, Murray Walz, a member of CTO’s College of Lived Experience opens up about his health story, Idiopathic Pulmonary Fibrosis diagnosis, and experience with clinical trials.

Murray Walz, a member of CTO’s College of Lived Experience

After continually telling my family doctor I was getting short of breath while climbing stairs or walking uphill, he finally sent me for a breathing test and a CT scan. At the follow up appointment to review my test results, the doctor was not there. A nurse told me of my diagnosis, which was Idiopathic Pulmonary Fibrosis (IPF). She gave me printout explaining the disease and said that they would refer me to a Pulmonologist. On way home, my wife read the printout. The first line was “Life expectancy after diagnosis is 3 to 5 years.” Two weeks later I learned the wait time for an appointment with a Pulmonologist could be 12 to 16 months. This experience left me feeling angry, hurt and a burden to my family doctor.

Through my own research, I learned that there is no cure for IPF except lung transplant for which I was not eligible as I was too old. The two drugs that are approved for IPF have severe side effects and only delay scarring of lung tissue. From my years of managing plants in food and biodiesel industries I knew that no changes will happen without research.

Looking for local help, I found a renowned IPF specialist in Hamilton, Dr. Martin Kolb, Professor and Director of the Division of Respirology at McMaster University, the Jack Gauldie Boehringer Ingelheim Chair in Interstitial Lung Disease, the Moran Campbell Chair in Respiratory Medicine, and the Research Director at Firestone Institute for Respiratory Health. I emailed him with my story and said that I might be a good candidate for some of his clinical trials. Within 2 hours he replied stating first that he was sorry about my diagnosis and second that he would get a referral from my family doctor. I had an appointment booked with Dr. Kolb in two weeks.

His nurse set up a Zoom meeting before the appointment which my wife was able to join as well. She went over the diagnosis, prognosis, potential treatments, and rehab. She gave several approved websites to get more information and told us to take notes and prepare questions for the doctor at my first appointment.

At the appointment, the doctor answered our questions and explained the treatment options and medications available. For the first time, my questions were answered, and I felt I was involved in my own treatment and care. He was compassionate, knowledgeable, and really made me feel engaged.

At this appointment we also discussed my interest in clinical trials, and I learned that this disease could be hereditary. This reaffirmed my interest in trials, and I knew I had to help find a cure to make sure my grandkids would never go through this. My doctor and I discussed trials that would be a good fit for me, and he suggested one that he was the lead investigator on. He gave me all the information on the drug, the side effects, the Phase One results and the outlook for reversal of scar tissue. Since he was the lead investigator, he passed me over to a doctor doing the trial in Hamilton.

He went over all the trial information, visits required and tests that would be required. He showed me that because of these clinical visits I would receive numerous blood tests, breathing tests and physical checks that otherwise I would not receive from family doctor. We discussed the visits and the distance to the trial site. The pharmaceutical company would provide me with home spirometers, oximeters, and blood pressure cuffs for home monitoring. A nurse could come to my home to take blood tests.

With these benefits, I couldn’t find any reason not to join the study. As an add on, I was asked if I would consent to donating extra blood for biobanking. Blood would be stored for future scientific studies with extracted DNA. I couldn’t say no to leaving a legacy that could help future generations.

The study facilitator at the pharmaceutical company gave me personal and company contacts if there were any further questions. I am really impressed with the help I received in going into this clinical trial. My hope is that I can help further research to find cure for this debilitating disease.


#TalkClinicalTrials is a campaign led by CTO with the a goal of building awareness around clinical trials. Why? Because clinical trials matter to all of us. They help to generate better treatments and technologies and ultimately help shape the future of medicine. Explore more stories from the series and join the conversation on social media using #TalkClinicalTrials.