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My liver is failing rapidly, and my greatest stressor is waiting for a transplant, not knowing if it will come in time. I feel like a ticking time bomb. However, in order to qualify for a liver transplant in BC, I need to prove I have a dedicated “Social Support” person or team available in Vancouver for several months (before, during, and after the transplant). However I live in the Interior of BC; I cannot afford to bring someone to Vancouver with me, and I do not know anyone in Vancouver who can help me. So until a volunteer person or team steps up to help me, I am stuck without any way to get the care I need. If you can help me, contact HepCBC as soon as possible! FOR MORE INFO about what “Social Support” means, see below article from the June-July issue of the hepc.bull, page 6. Thanks! DALE.
Transplant patients from outside Vancouver face “Social Support” requirement hurdle
Many medical hurdles must be crossed before an HCV+ patient can become eligible for a liver transplant. Are you sick enough that you would die without a transplant? Or, with lifestyle changes, could you eventually heal on your own? Are you too ill to survive the operation? But beyond these obvious criteria patients must submit a plan proving they have sufficient “social support” on hand during the pre-transplant waiting period, in the hospital, and following hospital discharge for approximately three months. In B.C., liver transplants are only done in Vancouver, so for patients living outside the Vancouver area, this “social support” requirement can become the highest hurdle of all. It’s hard enough for the transplant patient to spend months away from family in Vancouver, unable to work but forced to spend money to live away from home. The Happy Liver Society often steps in to assist them with housing. But for a spouse or friend to leave job and family responsibilities behind for several months as well is, in most cases, a logistical and financial impossibility.
At HepCBC we understand that this requirement is justified in that patients definitely need help. The Vancouver Health Authority document “Social Support for Transplantation” says the support person(s) must “offer both instrument and emotional support”. Instrumental support means such things as personal care, transporting and accompanying patient to and from appointments, making sure medications and treatments are followed, doing shopping, cooking, laundry, and so on. Emotional support would include providing “an environment of hopeful optimism to promote healing and recovery” and ensuring the patient remains free of substance abuse during this period.
Of course the liver transplant team cannot provide what it correctly acknowledges are essential elements in the healing process. What we at HepCBC object to is the unjust advantage those residing in close proximity to the transplant centre have over those living outside Vancouver. Unless they can afford to hire a support person, it is impossible for a person from Nelson or Prince George to get a liver transplant. We do not have a solution for this but are hoping that once this situation is publicized, some Vancouver-area service organizations, church groups, or other volunteers may recognize forming a team of “liver transplant support volunteers” as an opportunity to save lives and make our transplant system more just for people from all over the province. We encourage any such groups to contact HepCBC or talk to the Pre-Assessment team at BC’s Organ Transplant Clinic (2775 Laurel Street, 5th floor — phone 604-875-5182).