Four years ago, double-lung transplant recipient Jacqui Bowick-Sandor ran a Facebook contest to name her two new lungs. The winner suggested Amazing and Grace. The names could also be used to describe this brave 55-year-old from Smith Falls, Ontario, as she faced life with IPF and then the ongoing challenges following her transplant.
Her journey has not been the miracle cure that many others talk about or experience. She has always struggled, and still does, health-wise, but she has important lessons to share with our pulmonary fibrosis community and is adamant about giving back to others in many ways.
You can hear Jacqui talk about her lung transplant in her own words in her 16-minute podcast.
She shares her thoughts and feelings of fear and excitement. The endless complications, including heart issues, a 28-day coma, and re-admission to hospital after catching C-difficile and suffering from hypoxia during rehab. She talks about sobbing for joy when she finally made it back home. She also shares some humorous moments, like offering six first responders (EMS, police and firefighters) Girl Guide cookies, when they arrived after she had difficulty breathing while at the rehab facility. They offered her oxygen in return and she thought it was a pretty good trade!
Misdiagnosis
For most of her life, Jacqui has lived with less than perfect health. She always had sinus issues and caught every cold. She seemed to be at the doctor all the time. No wonder she pursued careers as an RNA (registered nursing assistant) and as a pharmacy technician. She was always in tune with her body and would dig, dig, dig for information about her health issues.
She was mis-diagnosed three times, as she sought relief from a persistent cough, shortness of breath and fatigue. The first inkling she had of a more serious lung issue, was during a regular pre-operative assessment for an unrelated matter in 2011. The anesthesiologist noticed that she had cupped fingernails, a sign of pulmonary fibrosis, and suggested she be followed up by a respirologist.
Diagnosis
In 2012, she finally learned that she had idiopathic pulmonary fibrosis or IPF.
“At the same time I was trying to find a new family doctor, since mine had retired. No one would take me when they learned I had IPF. Many of them didn’t know much about the condition. I felt so alone.”
Eventually, she did find a new family physician, who is even now on speed dial on her phone. “My advice is to find the right doctor for you; someone who respects and honours who you are and lets you speak about your feelings without restriction.”
Meeting Robert and Heather Davidson
Around the same time, Jacqui met Robert and Heather Davidson during a CPFF awareness event at Queen’s Park. “It was just so wonderful to speak to others who were facing the same challenges that I was. I got more involved in CPFF and attended several advocacy events and did some fundraising too. The support groups were a bit too far away for me, but I did meet people that I could reach out to when I needed support or information.”
Robert also told me about the ILD clinic at Toronto General Hospital and I did some research and got a referral as soon as I could. I still remember what Dr. Shapera at the clinic told me, “Jacqui, from now on you are the CEO of your own health.” I took his advice seriously and did everything I could to learn all I could about the disease and how to manage it.”
Although she eventually had to give up her job, Jacqui kept busy and as active as possible, swimming and preparing to be a transplant candidate. Within a matter of days in November, 2015, she entered a period of acute exacerbation. “One day I was swimming my laps and two days later I could barely get out of bed.”
Raising Funds for Pulmonary Fibrosis
Her support team of “angels,” helped her raise more than $30,000 from her community of Smith Falls to make the move to Toronto in February 2016 to wait for new lungs. On March 4, 2016, she got the call that lungs had been found for her. “I was excited, scared and grateful to the family making this gift to me.”
Jacqui’s Learning Journey
Since then, Jacqui has described her journey as one of learning; about the power of friendship, about being vulnerable, and about helping others. Today, she has a personal support worker come to help her for an hour each day. She has struggled since being home. “I’m not doing very well, health-wise” she says. She has diverticulitis, continuous urinary tract infections and diabetes. “Sometimes it’s hard to wake up and I am confused and itchy,” she says.
Jacqui does get out a bit, but only for about two hours at a time. She needs five litres of oxygen at rest and 15 litres when active. She still swims once a week. Whenever she feels down, she remembers her Mom telling her to: “Buck up.”
Helping others helps her too. She is excited that her local Mayor Shawn Pankow will proclaim September Pulmonary Fibrosis Awareness Month. And a local group is raffling a cardinal quilt to fundraise for CPFF. She has also been interviewed by local media and wants more people to know about PF and its early symptoms, to avoid the long road to diagnosis. And there is her podcast too.
“I’ve survived this far with the help of a team of angels, a mountain of prayer and the love and kindness of so many others, so this is my time to give back.” Jacqui gives special credit to her husband Bruce, who is her primary caregiver. “I didn’t expect too much frankly. For 31 years he has spent most of his time and energy on his business. But, he has really stepped up and I couldn’t have done it without him. He is my main angel.” Jacqui is planning a future podcast with her husband Bruce.
Jacqui’s Advice to Others with PF
Get a great doctor who understands you; learn all you can about your disease and ask questions; reach out to the PF community through CPFF and other organizations. You are not alone. It can be a difficult journey, but if I can do it, anyone can.