Family and friends have asked how they can help. As of now we expect Christopher to be officially listed on the waitlist by the end of November. At that point, we simply wait “on-call” until the donated organs are available. When the call comes we have to get to Stanford within two hours. As we sort out logistics, it is clear that financial assistance will help. While Christopher has decent insurance, there are hefty copays for both hospital stays, testing, the transplant itself and a lifetime of continuing high volume medications (some of which are specialty medications with high copays or no coverage).
Christopher’s family has been warned that they can expect to hit the maximum out of pocket expenses for both medications and treatment which will amount to thousands of dollars. As well, there are many expenses simply not covered by insurance. Christopher and his family will be required to live near the hospital for three months post-transplant, after he is released from the hospital. Stanford is in Palo Alto, one of the highest rental markets in the country. During this time, the family will be paying double rent in order to live near the hospital and keep their current housing in Sonoma County. Lastly, there are also travel-related expenses, lost wages, possible professional physical therapy and caretaking, and other unanticipated expenses.

Stanford has made it clear that they cannot proceed with transplant without assurance that some of these expenses are covered. We are asking for donations and whatever small or large gift you can give. These donations are our hope for a longer life for Christopher and for his beautiful, light-filled boy to have a father for some more years to come. Your gifts of money are so much more than just that.

We have always tried to live our life with community as a central value. We know that the community we have tried to nurture and support has also been what has helped us survive thus far. Your kindness has kept us hopeful, and quite honestly sane. We are blessed to have you in our lives. We know these are tough times for many people, and completely understand if you are not in a position to donate. Regardless, we appreciate your listening and wish you and yours health and happiness. Thank you.

Details of Christopher’s History and Current Condition

Christopher was born with a Transposition of the Great Arteries, First Degree A-V Block, and a Ventricular Septal Defect. In lay terms, his plumbing was poorly constructed: blood that should go to his lungs to be oxygenated pumps through his body, and blood in his lungs has already been oxygenated.

Shortly after birth, He was airlifted to another hospital and had his first surgery at six weeks old. He had other surgeries at ages three, eight, thirteen, twenty-seven, and forty-three (the last of which sent him into renal failure almost killing him). He has had surgeries at the Mayo Clinic, Stanford Medical Center, University of California San Francisco (UCSF), and a hospital in Texas. He has had three pacemakers, a device called and occluder to cover a hole in his heart and titanium plugs placed in his heart to repair other circulatory issues. In 2016, he was diagnosed with cirrhosis of the liver and was discovered to have large varicies that were at risk of causing internal hemorrhaging. He had those banded in 2016 and since has only had small varices.
Currently, Christopher has been diagnosed with Congestive Heart Failure. He relies on 22 pills a day, a high volume of medical appointments and hospitalization when needed. In recent months his kidneys have shown signs of injury and weakness due to his weakening heart. At times his kidney labs revealed he was heading towards kidney failure. Consequently, he has been in and out of the hospital in recent months. As well, as a result of one surgery he had in 1988 he developed cirrhosis (40% of patients who get this surgery also develop cirrhosis). The sooner the transplants happen, the better the outcomes will be. The sicker Christopher gets waiting for a transplant, the more likely he is to have complications or other poor outcomes.
Financially, Christopher and Jen get by on mostly Jen’s income with some federal disability money that Christopher receives. They make ends meet but their income alone would never cover the forthcoming expenses.
Christopher struggles to get through most days as he has so little energy or ability to exert himself. Even simple house hold chores or playing with his son can be exhausting. Fortunately, with the help of wife, his parents, and his in-laws he is able to do what needs to be done and enjoy the many small, sweet moments in a day. That said, despite the privilege of this assistance, it will not be enough to get him through the journey of his transplants and we hope that our community can step in to help as well.

With Gratitude,

Christopher, Jen and Rylan