Jeannie Tom

Jeannie Tom: A Transformation

December 17,2015

Upon retirement from elementary teaching in June 2008, my motto was to be “free as the wind”; to travel and enjoy the pleasures in life.

I felt “on top of the world” during my first year, actively engaged in social and fitness activities. I had a lengthy case of exacerbated pneumonia in late 2009; followed by months of having shortness of breath with minimal exertion, extreme fatigue, dry cough, lower limb edema and Raynaud’s phenomenon.

My wonderful world had changed the next fall when I was diagnosed with a rare disease, Pulmonary Hypertension

My wonderful world had changed the next fall when I was diagnosed with a rare disease, Pulmonary Hypertension (PH) secondary to Scleroderma.

Initially, I felt relieved when I learned a definite reason for my continued ill feelings, though uncertain about its implications. After a referral to the PH Clinic at Toronto General Hospital, Dr. John Granton commented that my PH was not too serious and would be monitored quarterly. In fact, I left the clinic feeling I had aced the 6 Minute Walk test (6MWT).

Was I ever surprised to learn from the results of a CT scan the following February, that I had pulmonary embolisms in my left lung! We didn’t know where they had originated or how long they had existed. This diagnosis resulted in being prescribed an anticoagulant, Warfarin, and having routine International Normalized Ratio (INR) blood tests. Their results affect the dosage required to maintain a safe target range between 2.0 – 3.0.

Changes in diet, especially with Vitamin K content; prescription and non-prescription drugs; exercise could affect the INR test results. Fortunately by May 2011, the clots had cleared, although the anticoagulant therapy has to be continued indefinitely. Having had blood clots makes me susceptible to having repeated episodes.

That February consultation day was certainly upsetting, having also learned that supplemental oxygen would be prescribed, for exertion. My oxygen levels had desaturated to the high 70’s during the fall 6MWT. A whole new learning curve began with learning to manage the oxygen equipment: cylinders with compressed gas, switching to liquid oxygen; having a stationary home concentrator and a Liberator to fill portable strollers for daily outings.

For the first several weeks, I was quite self-conscious about being seen in public, wearing nasal prongs and having to pull an oxygen stroller cart. I was worried about what to tell friends and family, as I was having to adjust to a new lifestyle.

While I could not change this situation, I could change my perspective. Maintaining a positive attitude has greatly helped me

Within months of having accepted PH as a new normal, I could move on with my life. While I could not change this situation, I could change my perspective. Maintaining a positive attitude has greatly helped me, since diagnosis. I continue to be bothered by having shortness of breath with climbing more than two flights of stairs, dry coughing spells, periods of fatigue, and Raynaud’s in my fingers. It is important for me to balance rest and activity. Having a daily fluid restriction of 1500 ml and sodium restriction of 1500 mg to reduce edema requires careful dietary planning.

With the assistance of my faithful companion and godsend, Oxy-tu, for exertion, my quality of life has greatly improved. We are happily married; we celebrated our first “wedding” anniversary in Feb. 2012, joyfully participating in a Zumba Gold class! Whenever my friends see me without Oxy-tu, they always ask. Generally I do not need oxygen during rest or sleep.

Having Oxy-tu provides an excellent visual resource that I have lung issues. I take every opportunity to actively spread awareness with friends, family, medical professionals, and the general public. I have participated in media advocacy initiatives with the Ontario Lung Health Alliance, PHA Canada and PHA Toronto Chapter, at our Ontario Legislature at Queen’s Park. Meetings with the Health Minister and Members of Provincial Parliament to share how PH has impacted my life have been so empowering.

In May 2014, CTV News Health Reporter, Pauline Chan, interviewed Dr. John Granton and me, and created a video to promote PH awareness. At the PHA Canada Conference in May 2015, my name was listed among six nominees for the patient advocacy award. It was indeed a tribute to have been recognized by our co-leader, Loretta Chu, at PHA Toronto.

The more educated I am about the disease, the better I am able to manage its symptoms, the challenges of daily living, and have a better quality of life.

Education received from attending clinics, hospital health talks, PHA Conferences, listening to archived conference webinars, have broadened my knowledge. The more educated I am about the disease, the better I am able to manage its symptoms, the challenges of daily living, and have a better quality of life. I refuse to let the illness define me. I focus on what I can do to rise above the situation.

My social calendar is filled with attending pulmonary rehab twice weekly with a 90-minute transit commute each way. I am a co-chair for program for the Scarborough Branch of Retired Women Teachers of Ontario (RWTO) and their photographer. I seek out volunteer patient opportunities to assist medical students, at the Wightman-Berris Academy, with developing their clinical skills. I am an active participant in three lung health support groups by giving occasional talks on new knowledge gained, or shared experiences from medical research projects where I have participated as a volunteer.

Occasionally, I write newsletter articles for University Health Network (UHN), PHA Canada, and Scleroderma Society of Ontario.

Every day is a gift.

Keeping active in the community gives me a meaningful purpose for living life to the fullest! Every day is a gift. Our lives are richer when we take the time to be thankful for living.

– by Jeannie Tom
Toronto, Ontario, Canada

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