Terry’s Story – Assessed Too Late

My husband Terry fought a valiant, courageous year and a half battle with the disease named idiopathic pulmonary fibrosis but he ultimately lost that battle on May 8, 2017.

Things started out innocently enough.  Terry was experiencing coughing and the feeling of getting a cold or an infection.  At first doctors would prescribe antibiotics and Terry’s symptoms would ease, only to return again after a brief hiatus.  It took an “on the ball” family doctor to realize that there may be more going on with Terry’s situation than previously thought and so Terry was referred to a specialist respirologist.  After further testing, including a bronchoscopy and a wedge lung biopsy, a diagnosis of Interstitial pneumonia was determined in early November 2015.  We didn’t fully understand the diagnosis and definitely did not appreciate its seriousness as our specialist did not explain the disease, and looking back we did not ask the right questions.  We found little and mostly conflicting information online.  It wasn’t until an appointment in January 2016 that we asked the question – ” is this IPF ?” – to which, of course, the response was yes and that Terry could expect to live for 2-5 years.  This is when we understood the seriousness of Terry’s illness.  We were devastated, but optimistic.

For the next 6 or 7 months not a lot changed with Terry’s symptoms.  He had been placed on OFEV in January, and kept up with that treatment but other than some fairly minor breathing deterioration he could still walk, could still paint the house and do most other tasks that he wanted.  In August 2016 things started to deteriorate more and in September 2016 Terry started on home oxygen, at 2 lpm with activity.  Terry’s oxygen needs slowly increased until January 2017 when he started on oxygen 24 hours per day.  January 2017 is also the time when he was first assessed by the transplant clinic at Vancouver General Hospital.

The next 4 months are a blur.  The arduous transplant assessment testing took its toll on Terry.  His disease progression also went into warp speed at this time with oxygen needs increasing almost weekly and multiple hospital visits culminating in a month long visit.  The final tests, an angiogram and colonoscopy,  were extremely difficult to get through as by this time Terry was very near bed ridden and had to be transported in a wheelchair.  But he did get through the tests and there were no medical issues discovered so he was placed on the active transplant list in late April 2017.  This was incredibly exciting as we knew it was his only hope and Terry had worked so hard to get through the required testing.

Terry was fully bed ridden by this time and any transport required a stretcher service as he was unable to get out of bed or even really move in bed.  His oxygen needs had become so high that even at 20 lpm  he was unable to perform even the most basic of bodily functions.  He had lost 60 pounds and the doctors attempt to get him stabilized, prednisone, left him confused and hallucinating.  We attempted to bring him home, but after 5 days of worsening symptoms he had to return to hospital, where he passed away the next day.

IPF is a horrible and vicious disease.  My advice to anyone who has been dealt this unfortunate hand is to fight like hell to be assessed for transplant at diagnosis.  The nature of the progression of this disease is just too unpredictable to wait.  Had Terry started the process at diagnosis instead of waiting until January 2017 he may have experienced an entirely different outcome to this story.  Stay strong and keep fighting and be thankful for every day.