Community Spotlight - Meet Jeannie!

Jennie is one of the most active members in the Poplar Community! She speaks up for those living with chronic lung conditions as a patient advocate and as one who shares knowledge and resources. Jeannie gets involved in research studies and she helps healthcare workers, like in-training physicians (residents), to learn how to interact with their patients. We are always impressed with how much Jeannie gets up to, especially while living with a breathing condition. This month, we’re getting to know Jeannie Tom a little bit better.

Poplar: Jeannie, what lung condition have you been diagnosed with?

Jeannie: I live with Pulmonary Hypertension (PH) and Pulmonary Fibrosis (PF), secondary to scleroderma. Was diagnosed with limited scleroderma in 2006. Diffuse scleroderma with PH in 2010 and PF in 2011. Had an episode of pulmonary embolisms from February to May 2011.

I was diagnosed with bronchiectasis and asthma in 2002. Sadly, there was no mention of the bronchiectasis being related to ILD, until 2011.

Poplar: Would you mind sharing your story so that people can get to know you a little better?

Jeannie: My hometown is Corner Brook, Newfoundland. There I loved nature and the outdoors: cross-country skiing, snowshoeing and hiking.

My dad had a confectionery store with an extensive collection of magazines, novels, comics and children's storybooks. I developed a love of reading from an early age. My spare time daily was spent helping to serve customers and pack shelves.

I am a life-long learner and educator. I began teaching at an elementary school that I had attended. Having had two colleagues, who were my former teachers, made me feel that I had come full circle.

My family and I moved to Toronto in 1981. My Ontario teaching career began with teaching English as a Second Language (ESL) to Adults for six years. After entering the elementary school system, I was an ESL/ESD Itinerant Teacher for six years.  During the last nine years, I was a primary chairperson. I loved these leadership positions with the Scarborough Board of Education. I retired in 2008, after teaching primary grades, mostly grades two to four for twenty years in Scarborough, Ontario.

I am now living with pulmonary hypertension and pulmonary fibrosis, secondary to scleroderma. I am an active member of several support groups and I enjoy learning and sharing new information from educational webinars and virtual conferences.

I am a patient partner with University of Toronto Medical Academies. I help to train the next generation of physicians with improving their interview skills to take patients' medical histories. I am also a patient partner with research groups.

I attend a monthly pulmonary rehab maintenance program and I enjoy group music therapy twice a week (Singing To Breathe and the Better Breathing Choir).

I love spending time on Facebook and YouTube, and listening to music (folk, country, gospel and music theatre). I love the accordion, fiddle, spoons, mandolin, harp, pan flute, piano and organ.

Poplar: How does breathing impact your everyday life?

Jeannie: For Pulmonary Hypertension (PH),  I experienced dyspnea with the minimalist of exertion. This happens with activities like climbing a flight of stairs, talking on the phone, carrying groceries weighing more than a 3L bag of milk, brushing snow off cars and scraping ice off windshields.

Bending down from the hips triggers lightheadedness. For instance, when picking items off the floor, tying footwear laces, unloading the washer, or retrieving items from the freezer drawer.

A relentless dry cough is triggered as the dyspnea increases. Also, going out in cold temperatures and getting items from refrigerators constricts the airways.

Poplar: How has your condition affected your lifestyle and quality of life?

Jeannie: For PH, to manage the edema in the lower extremities, there are daily restrictions with an intake of fluid, 1500 ml and sodium, 1500mg. It is important to read food labels carefully for daily servings. I consume low sodium or unsalted items. When dining out, I tend to request that condiments be served on the side. I aim to select entrees with the least amount of sodium. To quench the thirst, I keep frozen pieces of fruits handy to suck for nourishment. Fresh fruits and veggies are great snacks!

In 2011, I had a brief period with pulmonary embolisms. While on an anti-coagulant, warfarin commonly known as Coumadin, I had to be mindful of foods with Vitamin K, leafy greens like spinach and kale, which could lend to clotting tendencies and affect the international normalized ratio (INR) readings (INR is a lab test).. Having them in consistent amounts regularly, helped to stabilize the INR. My target was to keep the INR between 2.0 and 3.0. If 1.99 or under, the blood would clot too easily. If 3.01 or above, there could be excessive bleeding or hemorrhaging. 

To manage dyspnea with PH and PF, I would practice pursed lip breathing (exhaling gently as if blowing dandelion seeds). When climbing stairs, walking on a treadmill or street, I try to exhale on the exertion. Other breathing techniques I use are diaphragmatic breathing (deep breathing) and box breathing (with a finger, trace the perimeter of a window). Inhale for a count of 4, hold for 4, exhale for 4, hold for 4. Repeat several times. Focus on breathing through the nose.

Oxygen has been a godsend to give me more energy to enjoy life. I have been on 4 lpm of continuous liquid oxygen for exertion since February 2011. It's important to balance rest and activity. I suggest moving daily with fitness exercises and participating in a pulmonary rehab program.

Poplar: What has helped you manage your condition? Do you have any tricks or tips to share with others facing similar challenges?

Jeannie: Being educated and learning as much as I could about the disease symptoms, treatment options and lifestyle adjustments. Attending local, national and international support groups brings more diverse knowledge and lived patient or caregiver experiences. YouTube videos are interesting to view visuals about topics being discussed as well, and you can reference webinars of interest.

I recommend having a pulse oximeter handy for monitoring one's oxygen saturation and heart rate. Keep a journal of readings with dates, times, and types of activity, especially when there are concerns. Bring this data to consult appointments with one's medical team.

Poplar: Prioritizing good mental health is an important part of living with lung disease. What helps you to keep a positive mindset and outlook?

Jeannie: I have always felt that I live with these diseases, though I am not these diseases. Focusing on the concept of living brings life, joy, happiness, gratitude and hope.

Life throws many challenges our way each and every day. While we cannot always control what's happening around us, we can control our reactions to them.

Poplar: What advice would you offer those who have recently been diagnosed?

Jeannie:

• Be prepared for consults by having your top five questions or concerns listed. Bring them up early in the consult to allow time for discussion.

• Bring a loved one or trusted friend to be a second pair of ears and record notes.

• Be your own advocate. Make your needs and concerns heard.

• Share your story with family and friends to bring awareness to your lung disease(s). Request help, if needed.

• Learn as much as you can about your disease symptoms, treatment options and lifestyle adjustments.

Thank you, Jeannie, for sharing your story with us! It’s comforting to know that we are not all going through this alone and that others understand our journey.  If you’re looking to connect with Jeannie and others living with chronic lung conditions, join our free, online Poplar Community and post your questions in “The Big Chat” area. We’d love to hear from you! 

Respiratory Therapists are standing by to support you. Call 236-361-3480 or email poplar@poplarpulmonary.com to book your free Welcome session today.