Scott Ames Liver Transplant
Donation protected
The Story (Photo above of Scott Ames and his girlfriend Marissa)
Scott Ames fights his rare liver disease (PSC) with humor, love, and upcoming liver transplant! Goal: 20K
We are a family of high-spirited people: we work, laugh, and play hard. We think gallows humor has a place in life – especially when dealing with something largely tragic and humorless. Such was the case when we found out that our loved one, Scott Ames, has PSC (Primary Sclerosing Cholangitis). That was a dark day, a shocking day, and a day that required we dig deep to find the perseverance, humor, and will to face an incurable disease. But at least we could tease Scott a little bit about looking like an Oompa-Loompa….
If you’ve never heard of PSC, you are not alone. It is a rare autoimmune disorder affecting the bile ducts and liver, hence the high bilirubin that causes jaundice. It is usually diagnosed in people around age 50-60; Scott was 22 years old when he went to the emergency room with severe abdominal pain. Diagnosing him took a week of speculation, tests, and multiple doctors weighing in; the doctors were befuddled as to the overall condition of Scott’s abdominal organs. What could be going on with this young man? He left the hospital having lost a gallbladder and having gained an awful and life-changing revelation.
The cause of PSC is unknown, and the only treatment option is liver transplant. Scott is almost 26 years old now, and as his health has steadily declined, the doctors have urged us to try to secure a living donor. The benefits of living donation are many, including much-improved outcomes for transplant. It’s scary to undertake living donation, but it turns out we have two warriors in our family: Scott, and his cousin, Emily Johnston, who has offered to be Scott’s donor.
Although our family has a thread of rare AB blood types that prevent many from donating, we were wholly unsurprised when Emily offered this greatest of gifts. Emily has spent her life on a firmly altruistic path, conducting missions abroad to help the needy, and always putting the needs of others high on her list of priorities. We are deeply thankful to her. Regarding Scott, we have been incredibly proud of him throughout the last years, as he maintains his sense of humor (and he’s really funny!), stays calm, confident, and strong, and sets an example for all us – who tend to take turns feeling the stress and pain of dealing with an uncertain future. And now the future is here: his liver transplant is scheduled for June 22nd.
As you might imagine, the costs associated with Scott and Emily’s care are incredibly high. We have already been stretched by the expenses of Scott’s illness, but as the transplant draws near, we fear not only for our loved ones’ health, but for the financial woes the surgery will also bring. Our expenses include travel from multiple states, long-term housing for Scott and Emily and caregivers, medical costs not covered by insurance, and general necessities like food and transportation. We rest secure in having the transplant performed at the top live donor institution, University of San Francisco, but it is an expensive city. Of course our family plans to contribute to help fill our financial needs, but the demand is still currently greater than our combined resources.
This fundraising site is a real gift, and we express our gratitude in advance, if you see fit to donate. We have conservatively set a goal of 20K to get us through only this transplant event; we accept the ongoing struggle to fund future medical care, anti-rejection medications, and yearly deductibles and co-pays, but it will truly be wonderful to avoid serious debt for the transplant itself.
Thank you for reading, thank you for considering donating, thank you to the NLDAC (National Living Donor Assistance Center) for the support they have already provided Emily. If you can’t donate, we will appreciate the support of your positive thoughts and prayers for a good outcome!
Much love and humor to guide all of us in our everyday lives.
Thank you so much...with Peace: The Ames, Johnston, and Bruer Families
Scott Ames fights his rare liver disease (PSC) with humor, love, and upcoming liver transplant! Goal: 20K
We are a family of high-spirited people: we work, laugh, and play hard. We think gallows humor has a place in life – especially when dealing with something largely tragic and humorless. Such was the case when we found out that our loved one, Scott Ames, has PSC (Primary Sclerosing Cholangitis). That was a dark day, a shocking day, and a day that required we dig deep to find the perseverance, humor, and will to face an incurable disease. But at least we could tease Scott a little bit about looking like an Oompa-Loompa….
If you’ve never heard of PSC, you are not alone. It is a rare autoimmune disorder affecting the bile ducts and liver, hence the high bilirubin that causes jaundice. It is usually diagnosed in people around age 50-60; Scott was 22 years old when he went to the emergency room with severe abdominal pain. Diagnosing him took a week of speculation, tests, and multiple doctors weighing in; the doctors were befuddled as to the overall condition of Scott’s abdominal organs. What could be going on with this young man? He left the hospital having lost a gallbladder and having gained an awful and life-changing revelation.
The cause of PSC is unknown, and the only treatment option is liver transplant. Scott is almost 26 years old now, and as his health has steadily declined, the doctors have urged us to try to secure a living donor. The benefits of living donation are many, including much-improved outcomes for transplant. It’s scary to undertake living donation, but it turns out we have two warriors in our family: Scott, and his cousin, Emily Johnston, who has offered to be Scott’s donor.
Although our family has a thread of rare AB blood types that prevent many from donating, we were wholly unsurprised when Emily offered this greatest of gifts. Emily has spent her life on a firmly altruistic path, conducting missions abroad to help the needy, and always putting the needs of others high on her list of priorities. We are deeply thankful to her. Regarding Scott, we have been incredibly proud of him throughout the last years, as he maintains his sense of humor (and he’s really funny!), stays calm, confident, and strong, and sets an example for all us – who tend to take turns feeling the stress and pain of dealing with an uncertain future. And now the future is here: his liver transplant is scheduled for June 22nd.
As you might imagine, the costs associated with Scott and Emily’s care are incredibly high. We have already been stretched by the expenses of Scott’s illness, but as the transplant draws near, we fear not only for our loved ones’ health, but for the financial woes the surgery will also bring. Our expenses include travel from multiple states, long-term housing for Scott and Emily and caregivers, medical costs not covered by insurance, and general necessities like food and transportation. We rest secure in having the transplant performed at the top live donor institution, University of San Francisco, but it is an expensive city. Of course our family plans to contribute to help fill our financial needs, but the demand is still currently greater than our combined resources.
This fundraising site is a real gift, and we express our gratitude in advance, if you see fit to donate. We have conservatively set a goal of 20K to get us through only this transplant event; we accept the ongoing struggle to fund future medical care, anti-rejection medications, and yearly deductibles and co-pays, but it will truly be wonderful to avoid serious debt for the transplant itself.
Thank you for reading, thank you for considering donating, thank you to the NLDAC (National Living Donor Assistance Center) for the support they have already provided Emily. If you can’t donate, we will appreciate the support of your positive thoughts and prayers for a good outcome!
Much love and humor to guide all of us in our everyday lives.
Thank you so much...with Peace: The Ames, Johnston, and Bruer Families
Fundraising team: AMES/JOHNSTON LIVER TEAM (8)
Paula Ames
Organizer
Ventura, CA
Christina Bruer
Beneficiary
Ericka Ames
Team member
Tom Ames
Team member
Scott Ames
Team member
Mary Johnston
Team member
