Joey died tonight after a long struggle with Cystic Fibrosis. He never gave up, but his body gave out on him. His kidneys weren’t working, his liver, although it worked for a while, shut down tonight (likely as a result of the trauma his body was experiencing), his lungs were filled with a dense pneumonia, and they were unable to keep his blood pressure stable. The ICU team at VGH helped him fight a hell of a fight, but even after pulling out all of the stops, were not able to save him. The infection was in his lungs, his belly, and his blood. It was too much.
We heard several of the docs say that Joey had nothing left in the way of reserves to fight off the infection because he had a long wait and was so sick before his transplant. He had a will of steel, but you also need to be physically capable to survive such a major operation and the recovery.
The best way that people can help, is to make sure that you are registered to be an organ donor. I am confident that if Joey had received his transplant earlier, I would not be alone, a widow, at 31. I do not know who I am without him.
A large portion of people I talk to are under the impression that they are registered to be organ donors, but when we check it out together, they are not (it is no longer on your driver’s license or care card). The biggest way that people can help other families not go through what we are going through is to grab their card card number and check their registration status at: www.transplant.bc.ca Then sign up if you agree with organ donation. If you can say with certainty that you would not be an organ donor if it was your child, or spouse, or sibling, or parent who needed a transplant to save their life, then don’t sign up. Otherwise, please make your decision known so that other families don’t keep losing their loved ones.
I also wanted to send out a huge thank you to everyone who has supported us year, after year, after year. Knowing people care goes a long way and we are eternally grateful. We are very, very lucky.
There is still no cure for Cystic Fibrosis, the most common, fatal genetic disease affecting Canadian children and young adults. In addition to our own struggles, both Joey and I are tired of losing our friends to this deadly disease. If people are interested in helping to find a cure for CF, or learning more about the disease, I encourage them to visit: www.cysticfibrosis.ca
I am at a loss. A massive, massive, loss.