Joseph “Bernie” Hughes

July 22, 2000, marked a devastating date in the life of the then 24 year old Joseph “Bernie” Hughes that would change his life forever. A blood clot, caused from A Fib and cardiomyopathy released and went to his brain, leaving him near death, unable to speak, and semi-paralyzed on his right side. A college and high school outstanding athlete and football center, Bernie was able through his young age and physicality to survive. Through lengthy physical and speech therapy sessions he was able to regain limited use of his right hand and arm as well as the ability to speak. He has to word-search, but the words are there and they haltingly come out to communicate with others. He attended Butte College’s CARLO program for the disabled and began to re-enter the community. Bernie is and was an outdoorsman, a farmer, and a lover of hunting, fishing, and his dogs. He is shy and has a teasing sense of humor that can drive his sisters crazy, but a kind heartedness that shows great generosity. Post- stroke, his beloved life pursuits were within reach, although not to the degree he was accustomed to. Using his dominant right hand to write and manipulate fine motor skills is pretty difficult. Living in a small farming community in rural Northern California, Bernie sought local medical help for a decade; however, his heart grew increasingly worse and he received no clear answers from his doctors and grew weaker each year. Seven years ago he went to El Camino Hospital in Mountain View for heart valve surgery and received a pig valve for his damaged heart. The surgeon mentioned he had never seen such a malformed valve and asked to keep it for research purposes. As time passed, Bernie’s vitals were increasingly weakening and his life partner took him to UC Davis where the cause of his stroke was discovered. He had a genetic mutation of the TItan gene and it was destroying his heart muscle. Ordered by his cardiologist to no longer work, his days were a blur of medicine, no exertion, special diets and limited liquid intake. His was not much of a life. As the father of a young son, he longed to be able to lead a “normal” life, working outdoors on his family’s farm, and enjoying a relationship with his boy. Because he was so very close to death, this past month and a half he has spent every day withering in hospital beds both at UC Davis and Stanford waiting for a heart transplant. Prayers were answered and he received a chance of a new future with a heart transplant on October 24-25, 2024 at Stanford. The transplant is a week old today, but swallowing and aspiration is a problem, as is kidney function. Currently he is not able to eat or drink; this is extremely hard on him emotionally. Bernie has a long road ahead of him. Presently in ICU for probably another 8-10 days, if all goes well, he will then be released from the hospital and reside in an apartment within 15 minutes of the Stanford Hospital for a 3 month period. Only two caretakers are allowed to be with him during this period due to fear of contamination and him having no immune system. Bernie gets a modest payment for permanent disability from Social Security, he has Blue Shield insurance, and Medicare. Unfortunately, Stanford has no contract with Blue Shield at this time. Family will help and he is selling his home to help defray the costs of his bills at both UC Davis and Stanford and the cost of living in the hospital area for three months. At this time, the total amount is unknown, but close to 2 months in a hospital ICU and a heart transplant have to be very, very expensive. As humbling as it is to ask for help, Bernie needs any and all donations to help him get through this health and financial crises. His past 24 years have been pretty miserable. At 48 years of age, he has now got a heart that might take him forward for many productive years doing the things he loves. His hope is for a new future life on the farm with family, friends, his pets, and the chance of health.Thank you for any financial consideration you can give him in helping achieve this future.Family and friends of Joseph “Bernie” Hughes are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with a Transplant. Joseph “Bernie” has chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses.