September is Pulmonary Fibrosis Awareness Month around the world, and the Canadian Pulmonary Fibrosis Foundation (CPFF) is thrilled to offer our PF Community an outstanding series of educational and fun events and activities to boost awareness and raise funds for research and to support those living with the disease.
Similar to last year, most events and activities will take place safely online, due to the lingering pandemic. What’s on offer will help you and your family, friends and colleagues connect and spread the word about PF to the rest of the country in fun and engaging ways. There are also 17 new educational sessions online to help you live your best life with PF. And there are ample opportunities to share your stories, photos and videos.
Visit hopebreatheshere.com, CPFF’s website for Pulmonary Fibrosis Awareness Month to register for anything or everything (you choose) that’s on offer and more details about each event and activity. Check out the “Complete How-to Guide” on the website’s home page, for detailed instructions on registering for events and webinars, tracking your Walk kilometers, sharing your stories and photos, or making a donation.
“I encourage you to get involved in several Awareness Month activities,” says Sharon Lee, Executive Director of CPFF. “Every year, people in our community tell me how much they learned, or how they felt empowered, or how taking part made them feel less alone. You’ll be surprised by the personal benefits that involvement can bring, in addition to the benefits your energy and enthusiasm can bring to the cause.”
Please join us today in making the world a better place for people living with pulmonary fibrosis and their families. Visit hopebreatheshere.com and get involved.
For those who prefer to get their news and information using their smart phone, CPFF has a new app to help you explore and engage in the events and activities throughout Pulmonary Fibrosis Awareness Month and beyond.
Check out the “How-to Guide” on the home page of hopebreatheshere.com for detailed instructions on how to download the app to your Apple or Android phone.
You can support and share your Walk and submit your kilometres; register for live webinars; read others’ stories and share your own; chat with others; catch up on CPFF news and events; and find out what’s happening with your support group – anytime and anywhere.
One of the highlights of Pulmonary Fibrosis Awareness Month are the educational events. During the pandemic, these sessions have moved online, increasing the number of people who can see these expert presentations, from anywhere in the country.
This September we have 17 new presentations that will be presented live via Zoom and then posted to the Hope Breathes Here website, so those who cannot participate at the scheduled time, can view them at any time.
To register to participate in a live webinar, visit hopebreatheshere.com and click on “Live Webinars”, under “Educational Forums”. When you register, you will also be asked if you’d like to make a donation. You do not have to make a donation in order to register for these free webinars, although any donation you make will be gratefully appreciated, and you will receive a tax receipt. (For more detailed instructions on how to register for a live webinar, click on the “Complete How-to Guide” button on the hopebreatheshere.com home page.
Our first presentation took place last Friday, September 3 and featured Ron Flewett, an internationally known advocate for pulmonary fibrosis. Ron shared his experience living with idiopathic pulmonary fibrosis (IPF) including his journey as a patient who depends on oxygen. Ron is a trustee and spokesperson with the Pulmonary Fibrosis Trust in Staffordshire, UK. You can read more about Ron’s presentation in the article below or watch it when it is posted on the Hope Breathes Here website.
The other 16 offerings include in-depth presentations about specific types of PF, such as those arising from connective tissue diseases, including rheumatoid arthritis and sarcoidosis to several sessions about palliative care in general and in specific provinces. (Note: Palliative care refers not only to end-of-life care, but to care that enable individuals to achieve their life goals while living with a chronic illness.) Other topics include Lung cancer in ILD patients, Generic anti-fibrotic medications, Nutrition, Coping with loss and change, Navigating a new diagnosis, Lung transplant during a pandemic, Patient-centred care with new technologies and many more.
There are sure to be several of interest to you and your loved ones. You don’t want to miss them, either live, or at later time, when they are posted on hopebreatheshere.com. Register today.
After visiting 78 countries in five years, the majority of them while using oxygen, Ron Flewett, an internationally known advocate for people living with pulmonary fibrosis, provided an inspirational kick-off to CPFF’s series of webinars during Pulmonary Awareness Month.
Along with Debbie Roots, a respiratory nurse consultant at Homerton University Hospital in Hackney, London, UK, Ron and his wife Maxine described in their webinar titled Oxygen on September 3, how oxygen can enable you to live the life you want. Beginning this Friday, you can watch the presentation online by visiting Hopebreatheshere.com.
Debbie started the session by briefly describing how fibrosis affects the lungs, turning them from “sponges” into “rocks” and reducing the amount of oxygen available to the rest of your body. “A reduction in oxygen doesn’t just affect your lungs, it affects the functioning of all your vital organs,” she says.
She also talked about the various tests that assess oxygen levels and the different types of equipment that is available to deliver oxygen to individuals depending on their unique circumstances and lifestyles. She also noted that some equipment is getting smaller, and batteries are lasting longer, so that portable equipment is making it easier than ever to continue to live your best life.
For example, portable oxygen concentrators, about the size of a carry-on case can be pulled along like luggage, charged in a car, and are perfect for out-of-town visits or extended stays away from home. Others are much smaller, with shorter-life batteries, but can be used for shorter outings and worn over your shoulder like a purse or in a backpack.
Ron was diagnosed with IPF at 53 years of age in 2014 and was told his life expectancy was three to five years. He had been a fit and active man, cycling, doing triathlons, and playing football when younger. He had also met the “love of his life,” Maxine.
“IPF didn’t just change my life, it changed me,” says Ron. He became involved with a charity for PF in the UK, and now leads a support group, provides the patient perspective to pharmaceutical companies and has made many media appearances to advance the PF cause in Britain and around the world.
As Maxine tells it, “We knew we could take one of two roads: the positive one or the negative road. We chose to fight back and to live our life as fully as possible.” In 2016 they married and Maxine asked Ron about his “bucket list.” They both loved travelling, and Ron wanted to visit every continent and see every ocean. They decided to do it all, mainly by taking cruises. And so their adventure began.
After 20 countries, Ron needed to begin oxygen therapy. “At first I thought it would mean an end to our travels,” says Ron. “But, we continued on, planning more and making adjustments, so we could carry on.”
Ron insists that you should not be embarrassed to use oxygen in public. If asked, he makes a joke of it and says his oxygen is his “liquid whisky,” which usually gets a laugh. What’s been more challenging is having others do things for him.
As Maxine says, “As a man, it was difficult for Ron to have me lift the cases when we are travelling, and do other things, traditionally done by men. But, I told him we are doing this as a team. And most of the time, others around are happy to help us both. I’m sure, like I used to, they are thinking that someday that could be me.”
Ron also sees his oxygen as an advantage when travelling: He gets to book his plane seat in advance, free of charge; uses airport transport; boards planes first; and finds staff on airlines and cruise ships very accommodating about his needs and his oxygen. Once, he broke the lead on an old concentrator he had with him and one of the ship’s mechanics fixed it for him, so that it was better than ever.
Maxine and Ron do a lot of research and planning before they leave: checking on elevator access, hills and stairs and informing everyone that he will need and be using oxygen. They check in at the airport counter, not an electronic kiosk, and let all staff know that he has oxygen, every step of the way.
And while the pandemic has grounded them, except for an “isolated” vacation in Scotland in their own motorhome, they find many of the things they always did while travelling prepared them well for the pandemic.
“We have taken public health advice very seriously,” says Ron, “since COVID is a real risk to my status as a transplant candidate. Even before the pandemic we always used hand sanitizer or washed our hands often, didn’t eat at buffets, didn’t use handrails, and limited our close contacts.”
As his main carer, Maxine insisted from the beginning that Ron not hide things from her. “It is important to accept that you both have fears and worries and that it is best to talk them through, rather than let them fester inside, or try to protect the other person. If you are open with each other about what you want out of life, you can discuss solutions to challenges, together.”
With a charming sense of humour, Ron and Maxine also shared a few anecdotes about things going wrong when travelling, as well as a series of their own holiday tips, during their webinar. And Ron discussed how he “floods” his body with oxygen at 6 litres, for about five minutes, before going out on his electric bicycle these days, as advised by his health professional. And he maintains his oxygen level above 90 per cent during his ride, using a wrist monitor.
For now Ron and Maxine are keeping fit, safe and positive and “making memories” and plans for their next adventure when travel is possible once more.
As Ron says, “Oxygen is an enabler, not a sign of disability. It’s just a part of who I am now and it’s made it possible for me to pursue what I want from life.”
To hear more about how oxygen therapy can improve your life with PF, visit Hopebreatheshere.com and go to the Oxygen presentation with Ron Flewett and Debbie Roots under Educational videos, under the Educational forums heading.
Throughout the month of September, the Canadian Pulmonary Fibrosis Foundation (CPFF) is sharing the stories of those living with pulmonary fibrosis (PF), in a series of short videos.
“It’s one way we are raising awareness of this chronic lung condition, that has no cure, and how the brave people who live with PF and those who care for them, come from all backgrounds, ages and parts of the country,” says Sharon Lee, CPFF’s Executive Director.
You can find these stories, as well as stories and tributes submitted by the PF Community at CPFF’s HopeBreathesHere.com. You can share your story, photos and videos on the website via Facebook, by using the hashtag #hopebreatheshere. You may also see people living with PF highlighted in your local media, and on social media, as we share information about the disease during Pulmonary Fibrosis Awareness Month.
One of the Hope Breathes Here featured individuals is Naomi Matsushita of Toronto, Ontario, who has interstitial pneumonia, one of the 200 types of PF. After a bout of the flu nine years ago, she was left with a lingering cough and was eventually diagnosed with PF. She was a very active person and loved the theatre, but became very fearful of infection, even pre-COVID.
The pandemic has exacerbated this. Before the pandemic, she found help in the pulmonary rehabilitation program called “Singing to Breathe,” a choir for people with lung issues. Her husband has also been a great help taking on more and more caregiving tasks over time.
Rob Garbutt of Winnipeg, Manitoba lives with idiopathic pulmonary fibrosis or IPF (one of the most common types of PF, where the cause is unknown.) A physically active fellow, who skied, waterskied, and rode mountain bikes, like Naomi, Rob didn’t seem to recover as usual after a bout of flu 11 years ago.
He was first diagnosed with chronic obstructive pulmonary disease (COPD) and then later with IPF. For about eight years he was able to continue with his activities, until in 2019, he was “hit really hard” with an exacerbation and hospitalized for a week. His PF has been since worsened over time.
Rob still tries to remain as active as possible – with an incumbent bike pulled by his dog Maggie, his “best friend,” or by fixing his dock while hooked up to his portable oxygen tank. “I’m not one to be stopped,” he says.
Supported by his wife (and dog Maggie), Rob does get frustrated by the changes in his abilities, but belonging to a support group does help. In the meantime, he is waiting for the call for a lung transplant.
Jeannie Tom of Toronto, Ontario, lives with pulmonary hypertension and PF secondary to scleroderma, an auto-immune disease. When she retired from teaching in 2008, she too was quite active and social, playing tennis three to five times a week.
Jeannie, who lives alone, had an “extremely long” road to diagnosis. First diagnosed with bronchiectasis in 2002, she was only diagnosed with PF in 2011. In the years prior, through multiple episodes of flu and pneumonia, “nobody ever mentioned PF,” she says.
“I went through a mourning period,” says Jeannie, “for all the things I could no longer do.” And she worried about being tethered to an oxygen tank. While she now accepts the situation, she is sad about not being able to be spontaneous. She has found that pulmonary rehab is an effective way for her to manage her PF.
André Plouffe of Montreal, Quebec is devastated by his diagnosis of PF six months ago. He is still adjusting and he worries he will not see his grandchildren grow up.
He is still working as a subway driver in Montreal, and is finding it harder and harder to take the stairs he is sometimes required to do at work. “It’s like climbing a mountain,” he says. He is still able to do things around the house, but everything is progressively harder and he uses oxygen at home when necessary.
André and his wife share six children. As part of a large blended family, André is well supported, especially by his wife, but his current situation weighs heavily. One way he manages his self-care is by fishing, which he has always enjoyed.
John Dennis returned to Halifax, Nova Scotia, this summer following a single lung transplant performed this past March in Toronto. This month, John is determined to raise funds and awareness for pulmonary fibrosis in his province. Mission Possible for Hope Breathes Here with John Dennis will see him riding an ebike daily over various trails and highways in Nova Scotia as part of the CPFF Hope Breathes Here Clarke Walk event.
He’ll be seeking pledges with a goal of raising $25,000 and you can support his effort through the online Walk registration at HopeBreathesHere.com. “I will ride anywhere I am asked and I will speak to any group, so that I can raise awareness of pulmonary fibrosis and raise funds for the cause,” says John. You can read more about John’s PF and transplant journey in the April 2021 issue of the CPFF newsletter.
Last week, Sandoz Canada, a pharmaceutical maker of generic pirfenidone (brand name Esbriet) has confirmed that starting at the end of September, they will be providing compassionate supply of pirfenidone for anyone who is enrolled in their patient support program, who initially gets coverage either from the provincial payer or private insurance and subsequently loses their coverage. This will apply for all patients in all provinces across Canada pending drug availability, with the exception of Quebec where there is a specific regulation that makes it illegal for drugs to be given away free in that province.
This good news comes to CPFF from Dr. Shane Shapera, Director of the ILD program at Toronto General Hospital, UHN, who has been advocating for Sandoz Canada to provide a compassionate release program for pirfenidone.
“Our experience has shown that for those who start on pirfenidone, about 10 to 15 percent of patients will eventually lose coverage, either because they lose their private insurance or they fail to meet the criteria for ongoing coverage from the province at the time of re-application which takes place at six months, 12 months and then annually,” says Dr. Shapera. “This can be devastating for patients, because those who had previously been stable on the drug and then lose coverage, would have to make a choice about whether they decide to: a) stop their pirfenidone, b) switch to nintedanib (Ofev), or c) pay out of pocket.”
Our thanks to Dr. Shapera for his efforts on behalf of his patients and those across Canada and to Sandoz Canada for establishing this compassionate program for a select group of people.
“I think that this is a fantastic outcome that will allow this small, but significant, group of patients to continue on pirfenidone without living in constant fear that they might one day lose coverage and be unable to cover the cost,” says Dr. Shapera.
Those interested in learning more about generic anti-fibrotics, should register for Dr. Charlene Fell’s webinar Generic Anti-fibrotics: Is a Rose a Rose by any other Name? on Monday, September 13 from 1:30 to 2:30 p.m. EDT. Visit Hopebreatheshere.com to sign-up for the live presentation, via Zoom, or watch it afterwards whenever it is convenient.
Hope Breathes Here, the CPFF newsletter, would love to talk to you about your work experiences to share with our readers in an article in our November issue. We will maintain your anonymity if you wish.
Sharing your perspective about working while living with PF will involve a phone interview of 20 to 30 minutes at a time convenient to you and sharing of a photo (unless you prefer to remain anonymous.) You will also have the opportunity to review the article before publication.
If you are interested in being involved, please email [email protected], by September 30, with the following information:
Your name, phone number, age and your gender. Even if you wish to remain anonymous, we need to know your name, phone number and email address.
The type of PF you have and how long you have had the disease?
Where you live – the city and province?
What type of position you hold (i.e. Accounts payable) in which type of company (i.e. Lumber firm) and how long you have worked there?
Does your employer know you have PF and if so, what type of accommodations they have made for you?
We do hope to hear from several readers willing to share their story, so that we can help others who are also working while living with PF.