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For thirteen years, Pete (my husband and rock, and the father of our beautiful daughter, Grace) has been quietly and courageously fighting a debilitating lung disease called Sarcoidosis.

Today, his lungs’ ability to transport oxygen to his vital organs is 17%. Activities we take for granted – walking across a room, bending over to tie a shoe, driving, or even singing a favorite song – have become difficult for Pete to do. The damage in his lungs has put tremendous pressure on his heart, which is not able to take the stress. His only option now is a double lung transplant.

Updates (1)

January 9, 2022

1/9/2022: By the end of the month, we will have relocated from our quiet little homestead in Maine to an apartment in northern DE so that Pete can finally be placed on the lung transplant list at UPenn. It’s been a long road and we are facing many challenges ahead, but we are so thankful to have been given this opportunity. We are very aware that the gift of lungs for Pete means that someone else has lost a loved one and this will never be far from our thoughts and our hearts.

Our journey with Pete’s illness began thirteen years ago, but the journey with UPenn began just last June. We have his pulmonologist in Maine to thank for pushing us in this direction. Pete spent several weeks undergoing a myriad of tests and procedures to determine if he is sick enough to require a transplant but not so sick that he won’t survive the transplant surgery. On his first day at UPenn, they took 28 vials of blood. Pete joked that he didn’t even get any milk and cookies. Typical Pete, making people laugh in spite of the circumstances.

When we arrived home from UPenn, we felt pretty certain that they would accept him into the program, and so began working towards making the transition and relocation as stress-free as possible. We have a little piece of land in Maine where we have been raising goats and chickens for the past three years. We love these animals and while it took some time, we were able to find them wonderful foster homes. So wonderful in fact, I am a little concerned they may not want to come home.

We anticipate this relocation will be a minimum of one year. Pete has to be in close proximity to UPenn for 9mos to 1 year after his transplant surgery. We have no idea how long he will be waiting for his surgery once we relocate, this is the biggest unknown. We are paying twice as much for our apartment as we pay in mortgage for our homestead, but I am continually reminded of a beautiful Martin Luther King Jr quote – ‘take the first step in faith, even when you cannot see the staircase, take the first step.’

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January 17, 2022

I'm praying for strength, courage and wisdom for you and your family. Please let me know if there is more I can do for you.

Scottie Pennett

January 14, 2022

Praying that God holds you in the palm of his hand during this difficult time. Sending love and prayers.

Christina Distefano

January 13, 2022

Me ke aloha pumehana pau’ole.

Alan and Koa Kanamee

January 13, 2022

Love and praying for you!!!

Nancy Petravich