My IPF Journey to Palliative Care and Back Again

I was first diagnosed with IPF in 2010. Things were going reasonably well until 2018 when my wife and I took a trip to Europe to celebrate our 50th wedding anniversary.

We were on a river cruise and each day involved an excursion with a fair amount of walking. As the cruise progressed, I kept getting more exhausted each day. By the end of the trip, I had a hard time to walk even a short distance.

After getting back home, I started on Ofev, but the side effects were severe, even on a reduced dose. Over the next year I had a series of exacerbations finally ending up with a collapsed lung. I had lost 50 pounds, and felt very weak. Arriving at the hospital by ambulance I never thought I would spend the next three months there.

Normally, a collapsed lung will re-inflate fairly quickly, but with my advanced IPF, there were numerous holes from the scarring that would not allow the lung to re-attach to the chest wall. The doctors tried numerous procedures to get the lung re-inflated with no success. I had spent Christmas and my birthday in the hospital not knowing if I would ever go home. The doctors had installed a chest tube to drain excess fluid and air from around my lung. I was in the Thoracic ward, and the surgeons were beginning to think I would have the chest tube in place permanently.

Finally on March 12th, 2020, the day the world shut down due to the Covid pandemic my surgeon decided to try a risky surgery, a muscle flap where tissue from under the shoulder is flipped over top of the lung to try to cover the holes in my lung. It seemed to be a failure as the lung was still not re-attaching. They finally said there was nothing more that could be done for me, so they transferred me into Palliative Care and sent me home.

The nurses would come every other day to change the dressing on the chest tube. I have to say their care was excellent. I went for x-rays every month, still showing no improvement. Then, amazingly after about five months the x-rays began showing the lung closing up to the chest wall. Each visit showed more improvement and finally the happy day arrived when the chest tube was removed. With the tube removed, there was no more need for the nurse’s visits so I was taken off Palliative care.

The thoracic surgeons were elated, and quite surprised at the turn of events. They plan on using my case as a teaching study. I believe it was the many prayers and some very talented surgeons that helped me. As my doctor said, “you’re one of the few patients that went into palliative care and came out alive.”

My IPF journey continues, but I can enjoy my time in reasonable comfort, one day at a time.

– Brian Friesen