James' Story

In October 2009, James contracted the H1N1 Flu. It developed into a severe pneumonia, and James' health rapidly deteriorated. He became oxygen-dependent. A double-lung transplant became necessary for long-term survival. It was not a cure, but it would extend his life and greatly improve his quality of life.

 
In November 2009, James moved to Toronto in hopes of qualifying for a double-lung transplant. He was in and out of the hospital. He struggled to maintain his weight above 90lbs. It took James 10 months to become stable enough to qualify for transplant. James waited another 9 months on the transplant list. On May 12, 2011, James received the double-lung transplant that would save his life. He proposed several hours before heading into surgery. Our dreams would finally become a reality.

James' recovery was remarkable. He had few complications. He had a quality of life never known to him. He gained 40lbs. He was happier and healthier than he had ever been. The next year was the best year of our lives. We were finally able to plan for the future. We lived together in Toronto. James was also able to return home to British Columbia to visit his family and friends on several occasions.

In May 2012, James celebrated his 1-year post-transplant "lungiversary" with strength and optimism for the future.

In the following weeks, James noticed a slight decline in his lung function. A bronchoscopy revealed A1 rejection. A1 rejection is a very common and minor form of rejection that does often not require treatment and resolves with time. James' lung function continued to decline at a slow and gradual rate.

On July 2, 2012, James and I were married. It was a magical evening of love and joy. It was truly a celebration of life. (Read the story of our first date at The Grid Dating Diaries with psuedonyms "Jon" and "Amy").

The following day, James' lung function took a sharp decline. Another bronchoscopy confirmed the continuation of James' A1 rejection, in addition to inflammation without known cause or origin. James was given approval to return home to Victoria in British Columbia in mid-July. We were thrilled to start our lives together, but James' lung function took another sharp and rapid decline. His lung function had decreased from 70% in May to 35% in mid-July.

James was diagnosed with bronchial obliteratons syndrome (also known as chronic rejection, or lung allograft dysfunction). James had no signs of rejection or infection. This was diagnosis of exclusion. We spent the next few weeks in and out of hospitals for tests and appointments. James received high dose steroids, antibiotics and anti-virals with no improvement in lung function.

James continued to decline on a daily basis. We were advised to return to Toronto immediately to seek a second transplant. We took the next available flight. We arrived in Toronto on August 31, 2012, and James was admitted to Toronto General Hospital through the ER the following day. It had been exactly two years since James' was first listed for transplant. We never imagined we would be on this journey again in only a few short years.

James' lung function continues to decrease. He is often short of breath and struggles to breathe on exertion. There are few treatment options available. James has end stage lung disease and is in active lung failure at 25% lung function. He will need another lung transplant to survive.

Update (October 23, 2012): James is at 13% lung function. We will find out by the end of the week whether James will qualify for re-transplant.

Update (February 23, 2013): James was moved to the ICU on February 9, 2013 and intubated on a ventilator. He was temporarily on hold for transplant, but it now active again on the list. He had emergency surgery, because of high carbon dioxide levels, and was placed on ECMO (extra-corporeal life support, or rather, an artificial lung). He turns 29 years old today!

Update (May 29th, 2013): James headed to the OR for his second double lung transplant. Our gratitude is endless.

Update (July 15, 2014): We completely forgot to update this page! James is more than one year post-transplant, and enjoying each and every single day!