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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 (4)

April 30, 2022

April 30th, 2022: Pete has been in the hospital since Tuesday. His oxygen levels were dropping into the 60's when he would move around. The doctors don't like to see it dropping below 85.

We went to the Christiana ER initially - thinking it would be more convenient. It is a little closer and dropping Grace off with family would be right on the way. They basically held him until a bed opened up at Penn, which was last night. Lesson learned. Go to Penn. Christiana did some preliminary tests and treatment and were in continual communication with his transplant team at Penn which was good. While he doesn't have any signs of an infection, they are still treating him around the clock with antibiotics. An infection would be really serious, so they are being overly cautious. He also received the usual CT scans, x-rays, and an ECHO.

We are not entirely sure what Penn will want to do, although we suspect they will do a cardiac cath. They will likely want to definitively rule out a decline in his heart health as a possible reason for his levels dropping. He was able to sleep for a little while last night for the first time since he was admitted. He has a large room with lots of windows, and no roommate. It is hard on all of us, not having him home, but with Penn being the specialists, and knowing how thorough they are, we can at least rest easy knowing he is getting the best treatment available.

April 11, 2022

April 11, 2022:

Pete and I participated in an online UPenn support group today for lung transplant patients. The attendees were both pre-transplant, like Pete, and post-transplant patients. The first half hour had a guest speaker - a pharmacist, who went over the myriad of pharmaceuticals post-transplant patients receive. Three different anti-rejection meds, a number of anti-infection meds, and a myriad of meds to compensate for the side-affects of the main meds - 25 to 30 in all.

The powerful part of the support group followed with sharing from a number of post-transplant patients. Four individuals spoke as to where they are in their lives now - one gentleman just celebrated his 30th wedding anniversary. He had received his transplant six years ago. You could tell how much this second chance meant to him - he glowed. A woman spoke who had received her lungs eleven years ago. She was at her beach house and had just come in from a 2.5 mile walk. A third person, spoke from their hospital bed - having had a second lung transplant surgery after contracting Covid in December. Prior to this, he had had an exceptionally positive experience with his 'beautiful lung'. His has been a tough road these past several months but he is on the road to recovery finally and his words were an inspiration to us.

I couldn't help the tears - their stories were a message of hope. They are living examples of why we are here, and what we envision for the other side of all of this. It hasn't been easy these past few months - having put aspects of our lives and dreams on hold. This was the encouragement and affirmation we both needed right now. We thank those people for sharing and for caring enough to continue to participate in these support groups for years after their surgery. Your words lifted our spirits and gave us strength.

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Guestbook

July 19, 2022

Praying for you Pete.

Sheila Mugabi

March 1, 2022

Praying!!!

Ilse Apestegui

February 8, 2022

Pete, we love you and are keeping you in our daily prayers and have alerted our network of prayer warriors. Please know we hold you close in our hearts and will rejoice with you on the day your journey to better health reaches its goal. You got this cousin!

Love, Angie, Drew, Josie, and Jonathan

Angela Matthews