by Judy DesBrisay, British Columbia
The clinic hematologist listened attentively and replied concisely as the static-ridden radio telephone communication reverberated between Eureka, Nunavut, and Vancouver, British Columbia. “Yes, infuse the fresh frozen plasma (FFP) when you reach Resolute,” re-affirming my planned management of a persistent right knee bleed that occurred at a remote research camp on Ellesmere Island.
A helicopter ride over Canada’s immense High Arctic landscape had “ferried” me from the camp to Eureka. On Ellesmere Island, Eureka is the second most northerly permanently inhabited settlement on earth, a major Canadian weather station and settlement used mainly by Environment Canada and associated universities. Weather permitting, the bi-weekly “tundrasched”, a Twin Otter aircraft, would take me to Qausuittuq (place with no dawn), sometimes called Resolute Bay: a small Inuit hamlet on Cornwallis Island, Nunavut. There, I had an emergency cache of FFP in an industrial deep freezer. The challenges and logistics of ordering and transporting two units of FFP for possible use during my tour of duty as camp cook/nurse had been worthwhile!
At Resolute, I infused my “product”, continued “R.I.C.E.” [rest, ice, compression and elevation steps for first aid] and toured the Arctic outpost and Inuit settlement as I awaited flights to Yellowknife, NWT and Vancouver, B.C. Home-based physiotherapy replaced painkillers in managing this 1990 bleeding episode. At the close of my temporary leave of absence, I returned to my duties as a Vancouver-based community nurse, dividing my duties between a project with Persons With AIDS and a multidisciplinary team whose task was to facilitate the integration of students with severe disabilities into the public school system.
The Vancouver (Arthritis Centre) Hemophilia Clinic staff (especially Dr. G and nurse L) encouraged me to maintain my active lifestyle while respecting the influences of my rare factor V deficiency. Diagnosed at age 17 due to the investigation of my sister’s frequent serious bleeds, I was relieved to understand the cause of our hemorrhaging histories. I continued to be active at school, at work, and at play.
Pre-diagnosis, my “moderate” hemophilia resulted in signs and symptoms ranging from severe childhood nosebleeds to extended post-operative bleeds (that required “direct” person-to-person transfusions, in 1943 and 1947). Menses and childbirth posed many problems, in an era with limited management options. My worried hematologist and obstetrician guided me through three pregnancies and deliveries in the early 1960s. I have two amazing, married adult children and four astounding grandchildren. A hysterectomy at age 40 was well planned and managed; it freed me from multiple concerns. Following a 1992 severe motor vehicle accident I was unable to communicate with paramedic and emergency room personnel. Reference to my Medic Alert bracelet led to prompt collaboration with the clinic hematologist for the necessary management of my head injury and other trauma. My ongoing, assorted bleeding episodes are managed with and without the use of FFP. I now collaborate, as needed, with the St. Paul’s Hospital Adult Hemophilia Clinic in order to optimize my health.
As a 71-year-old woman with a factor V deficiency, I face new challenges. I now balance the benefits and risks inherent in management of my coronary artery disease. In April 2009 I participated in the CHS Calgary conference, Women with Bleeding Disorders: Life Stages. We’re moving forward in the diagnosis and management of hemophilia and in communicating our increased understanding with others.
I have travelled a long route vis-à-vis my understanding of and life with hemophilia. I completed my formal education and continued to explore the evolving world. I have worked in urban and rural communities. As an “Outpost Nurse” in the Nisga’a village of Gingolx, B.C., I diagnosed and treated clients on site and, when necessary, collaborated by radiotelephone with distant physicians and arranged the evacuation of severely ill persons by sea or air. The Nisga’a were patient, good humoured and accepting as I adapted to my expanded nursing responsibilities. Later outpost duties in the Chilcotin introduced me to the far-ranging Carrier/Sekani peoples and their ranching neighbours. As I traversed this region to visit far-flung homes I developed “off road” 4x4 driving skills. One morning a visiting client was startled when I answered the clinic door with my own intravenous pole in tow. The plasma dripped merrily while I assisted with her problems and bid her farewell. The Red Cross Outpost Hospital in Edgewood, B.C., enhanced my appreciation of the breadth of human capacity and the lessons to be learned in a nursing role that included collaboration with local residents, distant physicians and other healthcare consultants. My travels have taught me much. I am drawn ever northward: travelling to Nunavut in 1988 and 1990. In 2006, my Arctic exploration included Nunavut and Greenland. My husband Michael and I lived, worked and travelled extensively in South America from 1997 to 2000, including a trip to Antarctica.
Thereafter, we returned to Taharti, our wilderness home in central British We are nestled amid forest and meadow: an hour’s drive away from our nearest neighbour and totally “off grid”. The solar panels and windmill produce our power. We chop our wood and pump our water. Columbia. We are nestled amid forest and meadow: an hour’s drive away from our nearest neighbour and totally “off grid”. The solar panels and windmill produce our power. We chop our wood and pump our water. We hike, cross-country ski, swim, kayak, garden, maintain our log home and the rough access roads. Wildlife viewing, weather watching and star gazing fill our leisure moments. Mike makes music and I make art (my paintings are exhibited in solo and group exhibits in Canada and Chile). We have extensive first aid kits for our home and vehicles and a well-informed healthcare team in town, two hours’ backroad travel from Taharti.
Understanding my factor V deficiency has helped me to expand rather than limit my life. Satellite technology allows me to live in the midst of a remote paradise, collaborating as necessary with a range of resource persons, much as I did at Eureka two decades ago.
- December 2009