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In memory of
Steven ROBERT Nuss
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Background
This is the story of my son Steven. He was born January 6 , 1994. Steven was born with a disease called biliary Steven atresia that required him to have a transplant at the young age of 9 months old.
Life was pretty normal, blood tests and Dr. visits became our "normal"..
Steven Would put up a fight when blood work had to be done until the age of 7When he was 7 he sat there like a " big boy'" and took the needlel as everyone cheered. When Steven was in high school he became dabbling in drugs mainly heroin. Steven was a drug addict. Steven tried rehab 3 times in which all of them he bacame ill being there and was discharged before completion. At one rehab they didnt beleive him until he filled the garbage can with blood from varicies and passed out. Steven continued treatment with our local drug and alcohol program and continued on Soboxen treatment. He hasnt used since April of 2018. In July of 2018 we found out that he had hepatitis. This led to the failure of his transplanted liver. Our goal was to find a facility to take him this was extremely hard. The one thing he had to do was stay clean and attend treatment and counseling program. This he did until September 2018 when he began getting sicker and bleeding. Frequent hospitalizations and being sick led to his discharge from program. He would continue meeting with the Doctor and getting his suboxen. We needed to make it to February to be evaluated for a transplant by Thomas Jefferson in Philadelphia. Medically it was hard as Steven was hospitalized 50 some days during this period. I had his records sent out to 10 different transplant centers all to be denied. Thomas Jefferson said they would care for him and evaluate him after the 6 month period. He arrived by helicopter at Thomas Jefferson on January 28. Everything was a go until Dr. Chism, from the mental-pscyhe part of evaluation said that he didnt have counseling and said no transplant. He had encephalopathy and bleeding issues, i cried to them he was too sick. THEY DIDNT CARE. They said that Steven's chance of relapse would hurt their 5-star rating. NO LIE! From Thomas Jefferson he was transferred to Temple in Philly. So many mornings staring out the window at the city of Philadelphia watching the sun come up from mt window at the gift of life house. Was this going to be the day Steven would get listed for a liver? As helicopters frequently flew overhead i wondered if one would be for Steven oneday. About 8 transplant facilities could not do a retransplant and Steven's transplant is very difficult because of receiving 1/2 a liver at birth and how they had to hook it up. Also given his current weak health. Temple transferred him to Mt Sinai in NYC where he Was fighting for his life. He had a major bleed that they were able to stop. He needed to become stable so he can be transplanted. Mt. Sinai said YES!I Time ran out and we said Good-bye to our precious son March 3, 2019.
[ ] https://m.legacy.com/obituaries/wayneindependent/obituary.aspx?n=steven-robert-nuss&pid=191750293&referrer=0&preview=false
[ ] https://people.com/archive/the-gift-of-lives-vol-43-no-6/
[ ] https://www.washingtonpost.com/archive/politics/1994/11/28/shared-liver-transplant-bridges-cultural-gap-between-families/ad2d87be-f12e-4bf3-9482-fbf422973c6c/
[ ] https://wnep.com/2016/06/16/liver-brothers-meet-20-years-after-transplant/
[ ] https://wnep.com/2016/06/16/video-vault-split-liver-transplant/
I want to make a bench for our Memorial garden at PATH Contribute
Life was pretty normal, blood tests and Dr. visits became our "normal"..
Steven Would put up a fight when blood work had to be done until the age of 7When he was 7 he sat there like a " big boy'" and took the needlel as everyone cheered. When Steven was in high school he became dabbling in drugs mainly heroin. Steven was a drug addict. Steven tried rehab 3 times in which all of them he bacame ill being there and was discharged before completion. At one rehab they didnt beleive him until he filled the garbage can with blood from varicies and passed out. Steven continued treatment with our local drug and alcohol program and continued on Soboxen treatment. He hasnt used since April of 2018. In July of 2018 we found out that he had hepatitis. This led to the failure of his transplanted liver. Our goal was to find a facility to take him this was extremely hard. The one thing he had to do was stay clean and attend treatment and counseling program. This he did until September 2018 when he began getting sicker and bleeding. Frequent hospitalizations and being sick led to his discharge from program. He would continue meeting with the Doctor and getting his suboxen. We needed to make it to February to be evaluated for a transplant by Thomas Jefferson in Philadelphia. Medically it was hard as Steven was hospitalized 50 some days during this period. I had his records sent out to 10 different transplant centers all to be denied. Thomas Jefferson said they would care for him and evaluate him after the 6 month period. He arrived by helicopter at Thomas Jefferson on January 28. Everything was a go until Dr. Chism, from the mental-pscyhe part of evaluation said that he didnt have counseling and said no transplant. He had encephalopathy and bleeding issues, i cried to them he was too sick. THEY DIDNT CARE. They said that Steven's chance of relapse would hurt their 5-star rating. NO LIE! From Thomas Jefferson he was transferred to Temple in Philly. So many mornings staring out the window at the city of Philadelphia watching the sun come up from mt window at the gift of life house. Was this going to be the day Steven would get listed for a liver? As helicopters frequently flew overhead i wondered if one would be for Steven oneday. About 8 transplant facilities could not do a retransplant and Steven's transplant is very difficult because of receiving 1/2 a liver at birth and how they had to hook it up. Also given his current weak health. Temple transferred him to Mt Sinai in NYC where he Was fighting for his life. He had a major bleed that they were able to stop. He needed to become stable so he can be transplanted. Mt. Sinai said YES!I Time ran out and we said Good-bye to our precious son March 3, 2019.
[ ] https://m.legacy.com/obituaries/wayneindependent/obituary.aspx?n=steven-robert-nuss&pid=191750293&referrer=0&preview=false
[ ] https://people.com/archive/the-gift-of-lives-vol-43-no-6/
[ ] https://www.washingtonpost.com/archive/politics/1994/11/28/shared-liver-transplant-bridges-cultural-gap-between-families/ad2d87be-f12e-4bf3-9482-fbf422973c6c/
[ ] https://wnep.com/2016/06/16/liver-brothers-meet-20-years-after-transplant/
[ ] https://wnep.com/2016/06/16/video-vault-split-liver-transplant/
I want to make a bench for our Memorial garden at PATH Contribute
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