Rachel Arnot Rockwell

LIVING Liver DONOR NEEDED

Hello! My name is Rachel. I am 41 years old with two incredible children, Hannah, 12, and Oden, 8. We have a full and active life, loving to travel, play all sorts of sports, entertain our big family and spend time with friends. Before children, I was an elementary school teacher and I love being back in the classroom as a substitute! For the past 12 years, I have also been living with a liver condition called PSC or primary sclerosing cholangitis. Unfortunately, there is no understanding of why some people get PSC, nor is there a treatment or cure. The ONLY way to recover from the condition is to receive a liver transplant.

When my daughter was 9 months old, I was exhausted, and had a general malaise and sick feeling that I knew wasn't normal. Testing confirmed, I had an acute Epstein Barr infection, very high liver enzymes, high bilirubin and enlarged liver and spleen.

The condition has taken several turns in my body over the 12 years. I was originally diagnosed with autoimmune hepatitis. I took steroids for over 4-5 years. Looking at pictures now, I was unrecognizable, and I never felt quite well. My new doctor suspected there was a missing piece, and testing led to a PSC diagnosis which involves a life of endoscopies and colonoscopies, MRIs, CT scans, and monthly blood draws, extreme itching, joint pain, leg cramping, easy bruising, fluid build up in my abdomen and legs, weight loss, fatigue and dangerous fevers from liver infections. I live carefully through diet, exercise, and supplements trying to stay this healthy until a liver transplant option becomes a reality. Live donor transplant surgery is incredibly fascinating; a portion of a donor's liver is transplanted to replace my failing liver. The donor recovers to full capacity within 2-4 weeks, and I am healed completely from PSC!

On the up side, I have learned an immense amount about myself, grown immeasurably in invaluable ways of faith, empathy, and compassion, and met dozens of wonderful people thanks to this condition. Unfortunately, the bad is outweighing the good now, and I need a liver transplant in order to move forward. This transplant is the key to making that possible; quite literally, a gift of life.

I am looking for a live donor match, and I know it's a big ask. If you can consider it, thank you! If not, you can still help me by passing this story along; you never know who might consider it. I have complete faith that the right person is out there; maybe it's you or maybe it's someone you share this with. Thank you, thank you, thank you, for your role in helping me find a liver donor ASAP.

Since I have put this story on social media, there has been an incredible outpouring of love, kindness and generosity. It sounds as though more people than I ever imagined are offering to help me either by sharing my story or filling out the form to be a donor on my behalf. Just turning the corner from not having a solution to having real hope for a solution has given me so much strength and energy. Thank you for sharing and please continue to do so. I am so lucky to have such a vast, loving network of family and friends.

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