Today, “Dale” from Kamloops lies in a coma, awaiting a liver transplant that may never come. Because he doesn’t live in Vancouver, the only transplant centre in the province, he and his family face additional obstacles, claims Stephen Farmer, Victoria businessman, liver transplant recipient, and President of HepCBC Hepatitis C Education and Prevention Society. Farmer says Dale’s case is typical and illustrates serious regional inequities in B.C.’s current organ transplant policy. Getting tested for hepatitis C and treated quickly with one of the improved new treatments is a patient’s best chance for long-term survival. Liver transplant is an extremely expensive and painful last resort, and many on B.C.’s long waiting list die before a liver becomes available. To make it worse, people living outside Vancouver who need a liver transplant are at a disadvantage, particularly if they lack family and friends in the area.
Dale, a 56-year old heavy-equipment operator from Kamloops, was unknowingly infected with hepatitis C at birth, through a transfusion of tainted blood. He found out he was infected when he donated blood in 1992. Dale was offered a year-long hepatitis C treatment in 2000 (with Rebetron) which was terribly hard on his body, and which, unfortunately, didn’t cure him, either. Dale had to stop working due to his disease in 2005, but was able to collect a small disability pension and received a ‘tainted blood’ settlement from the Canadian Blood Services in 2011.
This summer, Dale’s belly swelled up with fluid (ascites); eventually pain (peripheral neuropathy) and fatigue sent him to bed. Ammonia accumulated in his blood, causing hepatic encephalopathy (HE), a form of dementia. On July 25th he was admitted to hospital in a hepatic coma. He is now unable to eat on his own, and when awake is confused and irritable. However, he is mostly uncommunicative, asleep about 90% of the time.
Outside Vancouver there are few liver specialists, so rural hepatitis C patients largely depend on their family doctor for care. Some doctors may not know that HE and hepatic coma reverse following a successful liver transplant; consequently some patients who should be assessed for transplant may be incorrectly diagnosed as “incurable” by their healthcare team, and denied consideration for this potential cure; Dale was luckier than many. Earlier this spring, Dale had been told he needed a liver transplant, and arrangements began with the “Pre-Assessment Solid Organ Transplant Clinic” at the Diamond Health Care Centre in downtown Vancouver. If Dale gets on the “active” transplant list, he will be given a beeper that rings when the liver he is awaiting becomes available, and he would immediately be flown out for emergency surgery in Vancouver. Dale passed most of the transplant team’s requirements. He was sent home to Kamloops to await news of an available liver and fulfill two missing requirements.
First, Dale was required to submit a signed letter affirming his attendance at a group session. This would have been an easy requirement, except that it also involved Dale reading through and filling out many pages of forms. By the time he received the forms, he was so confused and unable to concentrate (due to HE) that he couldn’t complete the forms before he lapsed into his current coma. Had he lived in Vancouver, he would have had greater access to support, and probably would have completed the forms in time. The hope is that medications his Kamloops doctors are now giving Dale will enable him to awaken from his coma long enough to fulfill this requirement standing in the way of his transplant.
Second, patients must submit a plan proving they have sufficient “social support” on hand during the pre-transplant waiting period, while they are in the hospital, and following hospital discharge for approximately three months. This support involves providing personal care, taking patients to appointments, doing shopping, cooking, laundry, and providing “an environment of hopeful optimism to promote healing and recovery.” The Happy Liver Society (www.happyliversociety.org) offers housing for some patients and their support person. However, for a patient’s partner or friend to leave job and family responsibilities behind for several months is, in most cases, a logistical and financial nightmare. Unless they can afford to hire a local support person, it is extremely difficult for people from outside Vancouver to get a liver transplant in B.C. Again, Dale was lucky, because Larry Loranger, Dale’s social worker at the ASK Wellness Society of Kamloops, has kindly agreed to take on this role. However, Larry really needs a team of volunteers in Vancouver willing to help him help Dale. Once a team such as this is formed, it could help future liver transplant patients from outside Vancouver as well.
Farmer affirms that he had similar difficulties in 2005. “I had the same experience with having to stay in Vancouver for two months post-transplant. My spouse couldn’t help as we had two school-age children at home who needed her care. It was quite an expensive juggling act for me to get caretakers and housing. Vancouverites certainly have an advantage.” Farmer’s elderly mother did her best to help him, though when faced with tasks such as changing bloody bandages or draining bags from a shunt, she found it very difficult to give her son some of the care he needed. While Farmer has no complaints about B.C.’s medical system and the wonderful people at B.C.’s Organ Transplant Clinic who saved his life, he says there is a great need for a Vancouver-based team of “rural liver transplant support” volunteers.
To make our liver transplant system more just and equitable for people from all over the province, and on behalf of Dale and many others like him, HepCBC is trying to find Vancouver-area service organizations, church groups, or individuals willing to form, train, or sponsor such a team (Contact HepCBC via www.hepcbc.ca/contact-us/). For additional information about liver transplant, contact Vancouver Coastal Health’s Solid Organ Transplant Program. If you are not yet registered to be an organ donor, visit www.transplant.bc.ca. Dale, his friends and family, and HepCBC send a big “Thanks!”