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Dear Friends and Family,

We are writing to share the hardest decision we have ever had to make. After a long process of deliberation and evaluation, Christopher has decided to proceed with the heart/liver transplant process. He is now a candidate at Stanford Medical Center. After a lifetime with congenital heart disease, six heart surgeries, several other heart-related procedures, three pacemakers, multiple hospitalizations, and nearly dying on more than one occasion, Christopher’s doctors have advised that all treatments to keep his heart going have been exhausted: a new heart and liver is his only option. This will be a long, difficult, and costly process. We embark on this journey with mixed emotions ranging from terror and sadness to excited anticipation for a new lease on life and many more years with his wife, young son, and loving community.

Updates (23)

January 23, 2023

Hello Everyone. On January 16th I celebrated six months with my new organs. It’s incredible to feel so good and to have energy I haven’t had since I was young. In the last six months I literally shed my skin, grew new nails, and watched skin conditions and varicose veins just clear up. I am able to move, run, and exercise in ways I haven’t in years. Best of all, I can play with my four-year old boy in the physical ways that he has longed for but only his mama, relatives and friends have been able to give him. Now, papa can do it too. My donor and his family gave me so much more than just two organs. Transplant is not merely a physical experience however, and emotionally and spiritually, it has been more challenging. There is an understandable sense that someone in my position would feel nothing but joy and gratitude. While I do experience both of those, the reality is more complex. Any life-threatening struggle is intense for everyone involved even after, and maybe especially after, you survive it. Returning home to a house with two other people who’ve also been through this huge, scary, and exhausting experience is… well as a friend says, it’s a trauma lasagna. It is understandable that we would struggle after such an experience, even if it went very well. Most people I’ve talked to about this, including counselors, are not at all surprised. But it took me back and has been harder than I’d anticipated. That said, we are slowly making our way through it and re-learning how to be a family and figuring out what that may look like moving forward. We are ever grateful for everyone’s love and support through every step. We also have begun feeling a strong draw to get back into life. So while I am immune-compromised and we still need to take precautions, please don’t assume we wont want to come to your party, dinner, or event. This also includes giving back to this community that has given us so much. So if we can be of any help, in any way, please give us the opportunity to do so. It would not be a burden but an honor to again participate in the mutual indebtedness that allows communities to thrive.

September 28, 2022

Hey all- while last weekend was my first weekend I was allowed to go home, my care team informed me that when I go home this weekend, I don't need to come back (except for routine appointments and check-ups, of which there are many in the first year). This is a huge milestone and I feel so fortunate to have done this well so far. The road ahead is still full of challenges, concerns and healing but I feel ready for it thanks to Jen, our families, and all the support we are getting from you all. So thank you!

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Guestbook

February 23, 2021

❤️

Yarrow Sweningsen

February 4, 2021

sending love and healing from all 3 of us to the 3 of you.

Katrina Mayo-Smith

February 2, 2021

Jen, Christopher and Ryan - our best wishes on this journey, knowing you treasure each day together. Marcy and Jerry Clausen

Marcy Clausen