Like too many others, Barbara Barr-Haylock’s convoluted route to a diagnosis of IPF took several years. After three lung infections in five years, and visits to a cardiologist, a gastroenterologist and a local respirologist, who told her she had “sensitive lungs,” an x-ray in 2010 finally revealed she had Interstitial Lung Disease (ILD).
“I’d never even heard of ILD or IPF before I started this journey,” she says. “When my family doctor told me the x-ray results, I immediately checked out ILD online to find out everything I could. I found out that TGH had just opened its ILD clinic, so I asked for a referral there. I also learned that I was probably going to need a lung transplant at some point.”
A CT scan in 2011 at the ILD clinic in Toronto, confirmed Barbara had PF, but it wasn’t until after a lung biopsy in 2012 that her diagnosis of IPF was confirmed.
Her pursuit of information, her commitment to staying as healthy as possible, as well as helping others deal with PF, has characterized Barbara’s PF and lung transplant journeys.
In 2011, Barbara took early retirement at age 60. When she was diagnosed with IPF in 2012, the first anti-fibrotic medication pirfenidone (Esbriet®) had just been approved by Health Canada, but was not yet funded in Ontario. Just days after pirfenidone was funded in Ontario in 2014, Barbara was approved to take part in a clinical trial of a new anti-fibrotic nintedanib (OFEV™), which was underway in Hamilton at the Firestone Chest Clinic. She participated in the Hamilton trial for six months and continued the medication for another two years.
In 2013, following an acute exacerbation, Barbara also began oxygen therapy, eventually progressing to 16 litres, with three reservoirs of liquid oxygen along with seven LOX portables and living with two, 10 litre concentrators, “which sounded like a jet engine, they were so noisy,” she adds.
“Going out with oxygen, reminded me of going out with small children, there are so many things to consider. How long will I be out? Do I have everything I need? Can I manage it all? And how embarrassed will I feel with the nasal canula and my equipment? What if something happens? Some days I hated it. It can be exhausting and depressing.”
At this time, her respirologist talked to her about being assessed for a lung transplant. “I called it the shock and awe discussion,” says Barbara. The transplant assessment went well. Barbara was a good candidate, but not yet. “They basically put people on the list who are not expected to live for more than two years and will not only survive the surgery, but benefit from it. I guess I was fortunate I wasn’t bad enough yet.”
Between 2013 and 2016, Barbara worked hard to keep her status as a good transplant candidate. “I was running away from a transplant, but in a good way, to maximize my time on this side of the transplant. I did my best to manage my symptoms to stack things in my favour for a good transplant result.”
Barbara pushed herself on the treadmill, drove and did her shopping and cooked meals. She got involved in online PF groups and became a member of the CPFF Board of Directors and is currently the Board’s Vice- Chair. She was determined to stay informed and to help others with PF learn how they could take control of their health. “Getting involved in the PF community allows you to look beyond yourself. It’s not a pity-party. It’s about taking charge and being prepared for any eventuality,” she says.
There was plenty to consider in the three years until Barbara went on the transplant list. “My husband was getting older. We had no idea how sick I would get after the transplant. And there is no doubt a transplant puts a heavy burden and stress on the caregiver. Living with a chronic illness and undergoing a transplant are WE journeys, not ME journeys,” she insists.
In early 2016, Barbara was again assessed for a lung transplant and was put on the list in November. She was able to get a copy of the transplant patient manual and read through it in advance of her assessment meetings. “The session is like a university lecture, it’s a lot to take in at one time. If you can, it’s best to read the manual in advance, just like you would prepare for a lecture. Then, you can focus better and prepare your questions. It’s much more productive.”
When she finally underwent her transplant, she was “comfortably committed” to the process. “I was still afraid, but it was a good fear. It was fear with knowledge, that I found so much better.”
In June 2017, Barbara received the gift of a right lung. She doesn’t remember the first few days after the surgery. But, it wasn’t long before she was chaffing at the confinement of being in the hospital. She got up and walked in record time and for a record distance.
Along with the physical recovery, transplant patients need to undergo training on their new drug regimen and do it themselves, with supervision, for 48 hours before being released from hospital. Post-surgery, Barbara was taking 47 pills. She now takes about 20. Regardless of their age or whether they have private drug coverage, every transplant patient is required to apply for “exceptional” drug coverage from their province, to ensure they can comply with the drug regimen after the surgery and benefit from this gift.
Just 11 days after her transplant, Barbara went home on Canada Day, 2017. Two days later, she made dinner. With a single lung transplant she still has IPF, but she did not require oxygen therapy for two and a half years after her transplant and it is still at a much-reduced level from before her surgery.
“Pushing myself in the years before my surgery paid off. Of course not everyone is able to do this, with many sick enough that they require hospitalization in advance of their transplant.”
Barbara urges candidates to listen to others’ stories, but with the understanding that everyone’s journey is unique to them and their circumstances. Learn everything you can so you are prepared. “At TGH, there were lots of online resources, including a video, and of course the patient manual. Read as much as you can in advance,” she says. “And have your caregiver involved and educated too. They will do most of the heavy lifting.” In addition to her husband Malcolm, Barbara’s brother Doug lives in the same household and was able to help out too.
Asked whether she would undergo the transplant knowing what she does now, Barbara offers a strong, “yes.” Because of her transplant drug regimen, she cannot take anti-inflammatory medication, which would help with her chronic back pain. “I may be in pain now, but I’m here to enjoy it,” she quips. “You take the bad with the good, and it certainly beats the alternative.”
What would she tell others considering a transplant? “The preparation is stressful, there’s a lot to take in. Take advantage of all of the available resources to learn all you can and be prepared. Knowledge gives you power over your fear.”
As for the current restrictions of COVID-19: Barbara adds that “as a transplant patient, I’ve already dealt with something similar, leaving the hospital with no immune system. I’ve learned how to isolate and practice good hygiene habits to protect myself. Life can still be good.”
An additional note from Barbara:
As part of our desire to give forward, we fostered a future dog guide for the Lions Foundation of Canada Dog Guides. Mandy was with us from January 2019 to February 2020. Our beautiful yellow lab learned her basic training, but more important was her socialization. We call this seeing them through elementary and high school. She accompanied me almost 24/7, including to medical appointments, especially at TGH, and to many events promoting Dog Guides. Mandy is now back at Dog Guides University in their service program for those with a physical disability, one of their seven programs (see www.dogguides.com). People constantly asked if I thought it would be hard to give her up. I said yes (and it was), but that in June 2017 another family made a difficult decision and because of that decision I am here today with a better quality of life.