On June 17, 2011 our lives as a family changed forever. After hours of surgery to correct Lily’s AVSD and Coarctation of the Aorta, her surgeon came out to find Jess and I. A nurse earlier in the day had warned us that this particular surgeon always took families into a smaller room to discuss the surgical outcome and we shouldn’t be worried that it meant something bad, so we weren’t shocked when he ushered us into a small room off of the surgical waiting room. But his words did shock us. He told us that they had looked at Lily’s pulmonary veins and that they had narrowed significantly since her last ECHO and so, they had attempted an additional surgery, called the Coles Procedure (or Sutureless Repair) in an attempt to open the veins back up and allow the blood to flow through from her lungs to her heart. Then he went on and everything went woozy. He told us that this condition was progressive, that while he had attempted this repair, he was not confident that it would work. He told us that her life would go one of two ways: that the repair would work and she would be fine or the veins would continue to close and she would eventually lose the veins completely and that would be fatal. He made sure that we understood that the first scenario was not likely.
He didn’t tell us that this condition had a name – now in hindsight, we realize that it was probably to keep us from searching it on the internet and losing all hope. But it does have a name, Pulmonary Vein Stenosis and searching it on the internet is one of the scariest things I have ever done and this sentence kept appearing everywhere: “Pulmonary vein stenosis is a fascinating yet frustrating and difficult to manage condition with an exceptionally high mortality rate.” All of the articles went on to mention the same thing, that in progressive cases patients are often treated with a lung transplant. We asked Lily’s cardiologist about that option and while she agreed that if her condition progressed to that point they would consider a transplant, but informed us that it wouldn’t just be a lung transplant but a heart-lung transplant because of the where the narrowing occurred in her veins.
Saying that the idea of a transplant is scary is the understatement of the century. We’ve watched other children with PVS go through them and some are thriving while others have lost the battle. We’ve seen other children go through liver transplants or kidney transplants and watched the effect those surgeries have had on their families. And in our own families, transplants have touched our lives as well: my mother had cornea transplants in both of her eyes; when Jess’ mom died in 2011 her family decided on organ donation and when one of my aunt’s was dying from lung disease, she was incredibly clear with her wish that her organs and tissue were donated for research. The entire idea of transplant can be so difficult at the time, for both the donor’s family and the recipients, and I have always believed that our organ donation rates would be higher if these decisions were made ahead of time instead of during a time of loss and grieving.
I have had the discussion about organ donation with Jess and with the rest of my family. They all know what my wishes are, but I also felt it was important to ensure that the question is answered for everyone to know, which is why I have registered myself as an organ donor. In the two minutes (literally, two minutes! Maybe longer if you have to search for your health card like I did, but once you have found it, the entire process takes 2 minutes) that it takes to complete the registration, you can save a life. Not only can you save A life, you can save up to 8 lives and impact the lives of 50 more.
In 2014, I started a personal campaign with Trillium Gift of Life and Service Ontario. I originally started with the goal of having 25 people register to become organ donors. I was shocked at how fast 25 people signed up and so I doubled that goal and have continued to double that each time I have reached my target number. Currently we have reached an amazing 381 registered organ donors and can only hope that number grows higher and higher.
So, I’m asking you to think about this. If you’re in Ontario I’m asking you to do more than think about it – I’m asking you to follow the link below and register as an organ donor (frankly if you had just skipped reading everything above and just scrolled down to the link you would be done already). Take 2 minutes out of your life (there’s nothing new on Facebook or TMZ, you just checked 10 minutes ago!) to save the lives of 8 other people. And if you are hesitant, please just look at Lily’s face below and register to help make sure that, if we ever have to go down that road, that there will be a donor available for her.