Where the Purple Saxifrage Blooms: My Arctic Shoreline Encounters with PH

Where the Purple Saxifrage Blooms: My Arctic Shoreline Encounters with PH

06.21.2018

This article is an excerpt from the 2017 Fall issue of Connections: The Official Magazine of the Canadian PH Community. Patients and caregivers receive it for FREE: click here to subscribe now and receive the latest 2018 Anniversary Special Edition.


 

While every PHighter’s journey is unique, certain patients’ stories stand out as particularly exceptional. Living in Kugluktuk, Nunavut, an Inuit community of 1500 bordering the Arctic Ocean, Millie Kuliktana has overcome many challenges that accompany life with PH in one of Canada’s most northern communities. 


Before the appearance of my PH symptoms, I was the Executive Director of Kitikmeot School Operations, managing a staff of 200+ and overseeing the education of 1800 students spread-out in eight schools located in five different communities. Flying from school to school, my workdays were filled with travel, children, language, and culture in the beautiful Kitikmeot region, where Inuit people thrive in between two worlds. However, everything came to a halt in March of 2010 when I froze in my shoes¾my legs cramped and I was unable to step forward or sit down. I had to be flown out on a medevac airplane to Yellowknife Stanton Hospital, where I was diagnosed with heart failure.

Several months later, I was still on medical leave without knowing the underlying cause of my heart problems. Thankfully, a flesh-and-bone guardian angel was placed on my path. The Nurse Practioner serving my region’s communities, Monique, attended a health conference in Toronto where she learned of PH. She described my symptoms to the specialist who had given the talk and was advised to contact Dr. Dale Lien at the Edmonton PH clinic. Shortly after Monique returned to Nunavut, I was back in ICU in Yellowknife with kidney failure and other life-threatening symptoms. Monique informed Dr. Lien of my situation and I was immediately transferred to the University of Alberta Hospital to be seen by PH specialists. I will forever be grateful that Monique cared enough to seek more information regarding my symptoms.

I spent several weeks in recovery under the care of the Edmonton clinic’s PH medical team. I was put on oral medications and encouraged to consider intravenous treatment. However, because of the many complications associated with IV therapy, being put on Flolan® would have meant having to move to Edmonton and leaving behind my arctic community and family. I couldn’t do it! I couldn’t give up my hometown and leave my children and grandchildren. I couldn’t live in a city. Not me! I decided against this treatment option and returned home. My life followed the phases of the purple saxifrage that blooms and fades each summer season; every three months, I flew from Kugluktuk to Edmonton via Yellowknife to see my medical team. On oral meds, my symptoms and quality of life remained stable, but without more aggressive treatment, I knew that I had limited time. I found myself attempting to make memories in a condensed timeframe and convinced myself that I had accepted my fate.

Watching my family grow and my grandchildren get older, I changed my mind about moving to Edmonton to be put on IV therapy¾I realized it was selfish of me not to do everything I could to stay alive. My husband and I moved to Edmonton in November of 2013. Before leaving to begin our new life, we were treated to a night of celebration by our community, who recognized how our involvement had contributed to the development of Kugluktuk and its people. This heartfelt departure gave us hope for good health and a happy new life.

I spent a month in the hospital adjusting to my new treatment and learning to mix my medication and deal with its side effects. When I came out, my husband and I stayed in an Inuit-owned home for northern patients. There, we formed a new family with other Artic region lodgers; I was able to speak in Inuinnaqtun, my Inuit language, and share country foods when cravings of caribou and arctic char were strong.

Eventually, we moved into our own apartment. We adjusted to our new city life and became involved with PHA Canada’s Northern Alberta Chapter. Fortunately, I was allowed to go back home twice a year for one-week visits, provided I was stable for travel. Life was so good during each visit home; I enjoyed fresh arctic air, frozen snow to walk on, fresh country food, familiar faces, and most of all my grandchildren’s hugs and kisses. I remained stable and, with a new season of blooming purple saxifrages, my husband and I were granted our wish to move back home. The people of Kugluktuk greeted us with open hearts and community members were eager to help me carry groceries, offer me rides, and deliver me freshly caught bounties our berries gathered from the land.

I’ve been back in Kugluktuk for two and a half years now and thankfully have only had to deal with one emergency when my chest IV line came loose. Self-care is a must when your closest PH specialists are two air flights away from your home. Support from my family and community is also essential and helps me emotionally, physically, and spiritually. My door is never locked; friends and family come and go as they please to check in on me.

At the moment, I see my medical team every six weeks through Telehealth and only have to travel to Edmonton for certain tests. However, I know that when I’m ready for transplant, I’ll have to move back to the city to wait for new lungs. Meanwhile I plan on enjoying the beauty of the arctic shoreline and the love of my family. I am happy to be with my community as we fight to thrive as healthy Inuit people in a fast-changing world.

Contributed by Millie Kuliktana, PAH patient, Kugluktuk, NU

 

 

Recent News

Subscribe

Get the latest on PH treatments, community events and more when you subscribe to our newsletter

ImagineCan_Accreditation_Trustmark_ENGFR_WHT-FNL_white.png