Organ donors give the ultimate gift

The Report: November / December 2001 vol.22 num.5

by YUKIE KURAHASHI

For every patient in BC preparing for an organ transplant, the diagnostic, clinical, and rehabilitation expertise of health science professionals makes a real difference in whether he survives.

For a patient recovering from or living with an organ transplant, the expertise HSA members bring is equally crucial, and is a deciding factor in whether she is able to live a full, active life.

HSA President Cindy Stewart credits the passion that highly trained HSA members bring to their work as an important contribution to the success and recognition won by BC’s transplant program.

“Since January 1986, more than 2,115 organ transplant procedures have been performed in BC,” she said. “Each of these patients had the benefit of the extraordinary skills and commitment our members bring to their work in
caring for these patients.

“Whether it’s helping to diagnose the causative disease, assessing and promoting optimal pre-transplant status, recovering organs, matching donors, or counteracting psychological or nutritional complications of the required immunosuppressive therapy, HSA members follow patients through every stage of their transplant and recovery.”

Although the range of care extended to transplant patients is impressive, BC still has a lengthy waiting list of people awaiting organ transplants.

“There is a chronic shortage of tissues and organs for transplant,” Stewart said.
“Now, partially due to the high success rate of the transplant program in BC, the demand for transplants is increasing – but the number of donors remains unchanged.”

To raise awareness for the need for more organ donor registrants, Stewart announced that HSA will be working in conjunction with the BC Transplant Society and the BC Federation of Labour to encourage members to register as organ donors.
Donor registry forms are included in the current issue of The Report.

“I encourage you to read the enclosed information, and consider registering as a donor. Many British Columbians are still not aware that a decal on your driver’s license is no longer enough. Please share your decision with family members, and send in your registration form.”

Lori Fortier: clinical dietitian, liver and lung transplant programs
By the time a pre-transplant patient is referred to Lori Fortier, the patient is very ill. Fortier, a solid organ transplant dietitian, is one of the pillars of the transplant program, having worked with transplant patients since the program’s inception in 1989.

Fortier has an intense workload overseeing the nutritional health of these acutely ill patients.

“I nutritionally assess patients by a thorough chart review, detailed diet history and physical exam,” she said. “Their protein, energy, fluid and micronutrient needs are assessed and patients are counselled on an appropriate diet with vitamin and mineral support to meet their assessed needs. Many patients need nutritional supplements, and some patients may require tube-feedings to improve their nutritional status.”

Despite her heavy workload, Fortier is reassuringly calm. It’s plain that patients under her care would be immediately at ease. Her professional manner and depth of knowledge and experience are clearly important assets in this difficult work.

“The nutrition aspect is so important in all phases of transplant,” she said.

“Appropriate nutrition intervention helps with symptom control and quality of life, as well as with morbidity and mortality rates. If you have appropriate nutrition support, your body’s immune function is improved. And it can actually prolong the time that you have before you need a transplant,” she said. “A malnourished patient can be put into better shape prior to transplant, which can improve surgical outcomes in terms of lower infection and shorter length of hospital stay – and this can help save health care dollars.

“For example, many of the liver patients I assess need a modified diet. They may need a protein modification, as some patients can get quite confused in the pre-transplant phase, as their liver is not functioning properly. This is known as hepatic encephalopathy, and one of the contributing factors may be too much protein in the diet,” she said.

Fortier notes that these complications are only the beginning. “We also recommend multi-vitamin and mineral supplements as needed because many of the medications that these patients are on, both pre- and post-transplant, may cause nutrient deficiency. For example, Prednisone wastes calcium – and some of these diseases themselves, like primary biliary cirrhosis, causes calcium malabsorption. So all these patients are on what I call osteoporosis prophylaxis,” she said. “I try to optimize their bone status pre-transplant as they are all on Prednisone post-transplant. As you can see, these are very complex patients, and there are so many things to take into consideration.”

Fortier’s work doesn’t stop with pre-transplant assessment, counselling, and treatment. She monitors patients when they come in for their transplant, and in the post-transplant outpatient clinic. Every successful transplant patient continues to require her expertise in periodic assessments and ongoing nutritional education for their daily lives, in order to remain as healthy as possible. Most days she divides her time between an “assessment and counselling” office at the BC Transplant Society, the transplant ward at Vancouver General Hospital, and in the post-transplant outpatient clinic.

“We have done close to 300 liver transplants and 100 lung transplants!” she said. “Seeing these patients recover – and go on to lead long, healthy lives – that’s the biggest reward.”

Bina Kopit: social worker for liver and renal transplant program
Bina Kopit specializes in another critical aspect of care for every transplant patient. She is a social worker working in the liver and renal transplant program, and is involved in all phases of transplantation – from pre-transplant assessment through to post-operative care and out-patient follow-up.

“My focus is on both the patient and his or her family or support system. For the patient and family, transplantation is a stressful experience,” she said.

“Patients who require a transplant have usually been ill for a very long time, thus negatively affecting all areas of his or her life, physically, psychologically, socially and financially.”

Kopit described counseling and referral to community agencies as two aspects of her job that can help to smooth the patient’s journey from illness to restored health following a transplant. She also intervenes with various governmental agencies when patients have trouble securing financial aid to live their daily lives, as many patients are unable to work for extended periods. Kopit carries a heavy workload and performs a difficult, stressful job with energy.

“I love my job because of the many patients that I have the opportunity to meet and help, and because of the skilled and knowledgeable people I work with on the transplant teams,” she said.

Karen Munn: bone marrow transplant coordinator
Karen Munn, a founding member of HSA, was working in tissue cultures well before solid organ transplants were ever performed at Vancouver General Hospital. In her 30-odd years at VGH, Munn has worked as a medical technologist in blood bank and immunology, and was one of the first technologists to begin performing bone marrow transplant work-ups when the procedure became established in the 1980s.

Thirteen years ago, she became the bone marrow transplant co-ordinator for all bone marrow transplant patients in BC – and even some from outside the province. Her expertise in human leukocyte antigen (HLA) typing is a key component of her work, and she has been instrumental in building one of the best bone marrow transplant centres in Canada – and perhaps the world.

Munn has the clear, calm gaze of someone who works closely with the gravely ill. “I enjoy working with the patients and their families, very, very much,” she said. “I learn a lot from them, and I teach them a lot about what the process is [for bone marrow transplant]. I have quite a number of family interviews where we look at the patient’s HLA-typing and DNA-typing. Then I show them what the process is for matching donors throughout the world. From there they have a better understanding of the process, but I also have a good understanding of how the family works, and that helps with assessment,” she said.

“You’re not only doing transplant work, you’re also doing assessments of patients – what their problems are, what their backgrounds are, what sort of support they have from their spouses or family, as well as the support they have when they’re admitted to hospital. I work a lot with preparing them to come in for the transplant,” she said.

According to Canadian Blood Services, hundreds of Canadians need bone marrow transplants each year to treat life-threatening illnesses. Approximately 30 per cent of these patients will find a family member with compatible bone marrow to donate. For the rest, an unrelated donor is the only available source of bone marrow.

Munn works with all the unrelated donors whose bone marrow matches the requirements of a patient somewhere around the world – or right here in BC.

Donors who register undergo a simple blood test. This is followed by white cell typing and infectious disease screening before a donor is added to the registry. The Canadian Blood Services then does extensive DNA work-ups for better matching with a potential patient. If a potential donor’s bone marrow comes up as a match to a patient needing a transplant, the donor is asked to come in to have their marrow extracted and harvested.

“But donors may be on the registry for many years before matching with a patient,” she said. “For example, one donor was on the list for 11 years, and has just recently donated.”

Munn laughs as she describes bone marrow donation as a “pain in the butt.” For those who do donate, the marrow is drawn through a needle inserted into the hip bone.

“I think people have a wrong conception about how much pain there is. Yes, there is some pain, but it’s no worse than if you were playing hockey and got bumped into the boards,” she said.

Munn grows serious as she explains the importance of becoming a registered bone marrow donor.

“The potential is there to do something for somebody, and you may never know who they are. It’s a good, altruistic, honest deed. You may never, ever be asked, but it can be a wonderful feeling.”

She adds that currently, she sees a need for specific groups of potential donors. “We really need people of South Asian ancestry to sign up. Also, another area where we’re short is people of mixed parentage,” she said.

The hard work that Munn and her colleagues do is paying off, and their innovative work continues to pave the way.

“We have such a strong program here, over and above any other in Canada, I think. It’s been very, very busy, but we have established certain procedures here with unrelated donors, and other centres from across the country have followed suit. It’s wonderful that BC is such a very giving province,” she said.