Thursday, July 18, 2013

Post 2 - Let's take a pause......

Before we begin this adventure let us acknowledge that it is only possible because a family was able in their grief to offer their loved one's lungs to Anna. They did not know Anna, they only knew that there would be someone who was at the edge of their life and through their gift they may be able to save that life. Patients like Anna are forever grateful to these families. It is more rare than not that donor families come forward to meet the recipients. It is a great act of bravery by facing their loss and very difficult for most families.

Donor families are celebrated at the Transplant Games. They are never forgotten. One of the ways they are honored is by participants wearing buttons of the donors whose recipients know them. It is also custom for participants to wear buttons of donors who did not offer them an organ but who are part of this amazing family just because they are donors. Anna does not know who her donor is so, we are bringing buttons to wear in honor of a member of our CF community.

Gianna Altano lost her battle with CF this year. Her decline was so rapid there was not time to find a match and donor to save her life. In turn she donated all tissues and organs that she could when she passed. She was waiting for her hero and she became a hero for others. She was only 23 and suffered from CF with acceptance, inspiration for others, and with the love of her family. We are wearing Gianna's buttons at the Games in her honor. We will proudly wear her beautiful face and tell her story to those that we meet.

I also want to acknowledge all of the others with CF who did not get this chance and Anna has had many friends who did not. There are not enough organs available for all that need them or the disease gets to be so severe that transplant is not an option. It is also true that only 50% of lung recipients live beyond 5 years. Anna has had a number of friends who had that initial amazing experience of new lungs but then lost their battle soon after. We are going to the Games in honor of all of them as well. Must say we also have friends who have lived long past the 5 year mark! And, that is Anna's plan....

Is it all worth it, this transplant path? I think yes, yes, yes. The desire for life and for CFers, the desire to be able to breathe deeply makes it all worth it even if it is for a short period. It is all a crap shoot. No one knows who will survive and for how when you meet someone with a transplant, tune in, you will sense a love of life, an appreciation for the moment and a desire to experience and get all they can out of this gift of health and time.

The Transplant Games is a way to bring attention to organ donation and awareness. It is hoped that people will think about this. It is hoped that people will talk with their families and declare that if anything should happen to them they want to donate their organs. And, it is hoped that you will sign up officially to be an organ donor so that there is no question. There is no better way to turn a tragedy and untimely death into a miracle for someone else. Please talk about this and be sure your family and friends talk about it too.

We are so thrilled we can share the story of our daughter and this tremendous joy. We are truly the lucky ones and we hold respect and love in our hearts for those that were not and will not be as lucky as we......

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