Rob VS PSC: A Fight for a Liver
Donation protected
In May of 2018, my husband of 11 years, Rob, was diagnosed with cholangiocarcinoma secondary to an autoimmune disease called Primary Sclerosing Cholangitis (PSC). People with PSC have a 10% chance of getting this form of bile duct cancer, lucky us. Essentially, his body is attacking his own cells as if they were an intruder i.e. bacterium, virus etc. This caused bile to back up leading to this cancer.
Rob has dealt with autoimmune issues for the better part o his life; having his colon removed in 1997 due to Ulcerative Colitis, which our 11-year-old daughter also has. Rob is no stranger to the doctors or medications, but we now face a new obstacle: transplant.
Rob is awaiting a liver donation, the only hope he has at a prolonged, quality filled life. He has been doctoring down at the Mayo in MN. Last summer, per Mayo protocol, Rob stayed in Rochester for 3 weeks receiving IV chemotherapy and radiation treatments twice daily. He currently has a regiment of oral chemo taking it 2 weeks on and one off.
These are not curative measures. Rob is seen by his team at Mayo, scanned and has labs drawn every 3 months to assess his situation. He receives a "MELD" score, this score essentially shows how sick he is and what his prognosis will be should he not receive a liver soon. At these appointments they are also looking for any spreading of the tumors. If this were to happen, Rob would be taken off of the organ registry and we would explore a secondary path.
Rob is an accountant at a company he loves and has been with them for many years. We have a soon to be 12-year-old daughter who is very knowledgeable and aware of what her dad is going through. Rob was an assistant coach for her basketball team the last two years. He is an active member in his community and never shies away from helping others. He was an EMS first responder for years. What I am getting at is that he is not a bad guy, far from it, just dealt a pretty sh*tty hand.
We are starting a GoFundMe (as we had in the past) to help cover costs during his journey to a new liver. We will use the funds for travel, food, medications, medical bills, and housing during the transplant process. We don't expect much and have been so grateful to all of those who have already helped.
It has been a very bumpy ride and will only continue to get worse. Rob is a very private person, but he is suffering and even kind words are appreciated.
Thank you.
Rob has dealt with autoimmune issues for the better part o his life; having his colon removed in 1997 due to Ulcerative Colitis, which our 11-year-old daughter also has. Rob is no stranger to the doctors or medications, but we now face a new obstacle: transplant.
Rob is awaiting a liver donation, the only hope he has at a prolonged, quality filled life. He has been doctoring down at the Mayo in MN. Last summer, per Mayo protocol, Rob stayed in Rochester for 3 weeks receiving IV chemotherapy and radiation treatments twice daily. He currently has a regiment of oral chemo taking it 2 weeks on and one off.
These are not curative measures. Rob is seen by his team at Mayo, scanned and has labs drawn every 3 months to assess his situation. He receives a "MELD" score, this score essentially shows how sick he is and what his prognosis will be should he not receive a liver soon. At these appointments they are also looking for any spreading of the tumors. If this were to happen, Rob would be taken off of the organ registry and we would explore a secondary path.
Rob is an accountant at a company he loves and has been with them for many years. We have a soon to be 12-year-old daughter who is very knowledgeable and aware of what her dad is going through. Rob was an assistant coach for her basketball team the last two years. He is an active member in his community and never shies away from helping others. He was an EMS first responder for years. What I am getting at is that he is not a bad guy, far from it, just dealt a pretty sh*tty hand.
We are starting a GoFundMe (as we had in the past) to help cover costs during his journey to a new liver. We will use the funds for travel, food, medications, medical bills, and housing during the transplant process. We don't expect much and have been so grateful to all of those who have already helped.
It has been a very bumpy ride and will only continue to get worse. Rob is a very private person, but he is suffering and even kind words are appreciated.
Thank you.
Organizer
Jen Alger
Organizer
Virginia, MN
