February 2020

February, 2020


Tips for dealing with winter challenges when you have PF

Winter is in full blast across the country. This is Canada after all. Cold, snow and viruses abound. Here are a few tips to keep you comfortable and out of the emergency room during these frigid months.

Minimizing your risk of colds and flu

  1. If you haven’t already, get your flu shot. People over 65 should get the high dose flu shot from their doctor. Discuss with your doctor if you should get a pneumonia vaccine as well.
  2. Wash your hands often, with soap and water. If you’re not near a washroom, use hand sanitizer. Keep some in your car, purse or coat pocket.
  3. People typically touch their face about 200 times a day. Try not to touch your face. And don’t bite your nails. Most people infect themselves. You touch a surface and then unwittingly touch your eyes, nose or mouth.
  4. Keep clear of people you know have an active infection with a contagious virus. Even the grandchildren. Instead, call or send a card to family or friends who are not well.
  5. If someone you live with has a cold or the flu, avoid physical contact, wash you hands frequently and do not share anything, such as towels, cutlery, etc. Use disinfectant wipes to routinely clean surfaces such as counters, appliance handles and knobs, door handles, phones, remote controls and light switches. Wipe car surfaces too.
  6. Keep up your good health habits: get enough sleep, eat a balanced diet and exercise as much as you can.
  7. Despite your best efforts, you may still get a cold or the flu. If you experience worsening respiratory symptoms for more than two or three days, seek medical attention. If you have worsening symptoms in combination with worsening oxygen saturations (measured by a pulse oximeter) go to the nearest emergency room to get assessed urgently. This assessment will often include a CT scan of your chest to look for pneumonia, blood clots in the lungs or a severe worsening of your disease called an “acute exacerbation.”

Protecting yourself from the coronovirus:

At the time of writing (February 3, 2020), the risk of acquiring the coronavirus in Canada is extremely low. The recommendations in the list above will also help protect you from this virus. Our understanding about the coronavirus is increasing daily. Continue to monitor your local news media for updates about the virus and any specific actions that are recommended by Health Canada to reduce your risk of acquiring this infection.

Download this COVID-19 information package from the American Thoracic Society.

Coping with the cold

Although exposure to cold weather can make you feel breathless and make you cough, cold weather is not believed to lead to any kind of permanent damage to the lungs.

To minimize the discomfort of breathing in the cold, here are a few tips:

  1. Minimize your time outdoors in very cold weather. Just stay inside.
  2. If you need to go out, wrap up in a warm coat and put a scarf across your mouth and nose to help heat up the air as you breathe.
  3. Have someone else heat up your car for you.
  4. If you use oxygen, put the tube under your coat. It may help warm it up before you breathe it in.
  5. Exercise indoors. If you go to a class or gym, remember to wipe down equipment and follow the tips for avoiding colds and flu.

ILD costs more than $11, 600 per affected employee in lost productivity each year

Dr. Chris Ryerson

A recent study into the costs of workplace productivity loss in 650 patients from the six-centre Canadian Registry for Pulmonary Fibrosis (CARE-PF) found that productivity loss was reported by 55 per cent of employed patients. You can read the full text of the study in the November 2019 issue of the journal Chest.

Of 650 eligible patients, aged 25 to 70, 23 per cent were employed and reported an average productivity loss of close to eight hours per week, with about two and a half hours due to absenteeism (being absent from work) and the rest related to impaired function while at work, referred to as presenteeism. The primary contributors to a loss of productivity were the severity of the symptoms of breathlessness and cough. Not surprisingly, increased oxygen use also correlated with a decrease in productivity.

Dr. Christopher Ryerson of UBC and a member of the Canadian Pulmonary Fibrosis Foundation’s (CPFF) Medical Advisory Board, is the study’s Principal Investigator. He says the study is noteworthy in several respects. “First, it’s the first of its kind to make use of the multi-centre Canadian Registry for Pulmonary Fibrosis (CARE-PF), which is now one of the largest PF patient registries in the world, really putting us on the PF research map.” Since this study was conducted, CARE-PF has expanded to eight centres in five provinces, encompassing over 3,500 patients. CARE-PF is funded by Boehringer Ingelheim.

“Second, this is the first study, looking at a large population in a rigorous manner, to quantify and determine the costs of workplace productivity loss. It gives us the actual numbers to what we’ve been hearing from our clinic patients. We knew that workplace productivity was an important component of the impact of the disease on people’s quality of life and on their income, and now we have the numbers to prove it.”

The study looked at patients up to the age of 70, to reflect the changing Canadian workforce, with more people working beyond 65 years of age. Compared to those of similar age and sex in the general population, employment among those studied 25 to 54, was 23 per cent lower. And among those 55 and older, employment rates were 18 per cent lower than those of a similar age and sex in the Canadian population.

Employers should note that people with ILD are mostly troubled by cough as well as shortness of breath with exercise. With the exception of some physically demanding jobs, people with ILD should be able to continue to contribute to the workplace and society. “People with ILD are still committed and typically capable of effectively working with the right supports and accommodations,” says Dr. Ryerson.

“Access to specialist treatment is still a gap in our health care systems that needs to be addressed, to enable people with ILD be contributing members of society with a decent quality of life,” says Dr. Ryerson. Policymakers should take note that the sooner people are diagnosed and treated with medications and interventions that slow the progress of the disease, the more likely that they will be able to continue in their occupation, perhaps with some modifications, and thus be more productive. An additional note of hope lies in ongoing clinical trials of medications intended to help reduce major symptoms of ILD such as coughing, a main component of work productivity loss and reduced quality of life.

In his clinic, Dr. Ryerson typically encourages patients to work as long as they are able to do so while also appropriately managing and prioritizing their health. While some patients need to go on disability or retire earlier than planned, it is often best for their mental and physical health, if they can continue to work. “It helps them feel engaged, can alleviate financial concerns, and keeps them active, both physically and mentally. It’s usually a significantly better quality of life when we can safely keep people engaged in their work and community.”

To read about other research studies on ILD and pulmonary fibrosis, visit the Research section of the CPFF website.

Editor’s note: We’ll be bringing you more information in future issues of Hope Breathes Here about CARE-PF and further studies using the registry, including a research study on the cost-effectiveness of medications and workplace productivity loss in people with ILD caused by autoimmune diseases, which are now underway.


Progress report on CPFF’s advocacy campaign in Ontario

On December 4, 2019, CPFF hosted a reception for Ontario MPPs. Chatting to one another at the gathering are, from left to right: Karen Trudeau, whose mother has PF; Jill Andrew, MPP for Toronto-St. Paul’s; Heather Davidson, CPFF Board member and Sandra Hardy of the CPFF Niagara-on-the-Lake support group. Ms. Andrew later addressed the audience.

Representatives of CPFF are encouraged by the positive response to our messages during our Advocacy Day at Queen’s Park on December 4, 2019. Sixteen MPPs attended our late afternoon reception and another 15 sent members of their staff. Find out if your MPP attended.

Four of the MPPs, one from each party, addressed the gathering, including: Robin Martin, (PC) Parliamentary Assistant to the Minister of Health, and MPP for Eglinton-Lawrence; Jill Andrew, (NDP), MPP for Toronto-St. Paul’s; John Fraser, Interim Leader of the Ontario Liberal Party and MPP for Ottawa South and Mike Schreiner, Leader of the Green Party of Ontario and MPP for Guelph. All of them praised the efforts of the Foundation for its work and offering solutions to improve care for those living with pulmonary fibrosis.

“Our thanks go to everyone who attended to learn more about the disease, our organization, and how the provincial government can improve life for those in our community, including patients, caregivers and health care professionals,” says Sharon Lee, CPFF’s Executive Director. “We were also pleased to see representatives of our sponsors in attendance.

“Most importantly, we are grateful that several people with PF and caregivers were on hand to share their experiences with elected officials and their staff,” she adds.

Earlier in the day CPFF representatives met with Christine Hogarth, (PC) MPP for Etobicoke-Lakeshore, whose father died of PF. She understood that the disease takes a toll, not only on the person with PF, but on the entire family. It can be exceptionally difficult for patients who need to travel long distances to see a specialist, as was the case for her father.

We also met that morning with Mike Heenan, Assistant Deputy Minister, Hospitals and Capital Division of the MOH, along with one of his staff Kristin Taylor. We were encouraged by his thoughtful questions and by a further meeting Ms. Taylor arranged with her staff in the Provincial Programs Branch to provide us with guidance in making a formal proposal for funding from the Ministry of Health.

On Jan. 20, we met with Tara Wilson and other members of the Provincial Programs Branch of the Hospital and Capital Division to discuss the information we need to provide the Ministry regarding our request for funding of two ILD nurses at five ILD clinics across the province. This Branch oversees many files, including asthma, COPD and rare diseases, among others, and has worked with many hospitals and agencies to develop new programs.

Since then, we have been in touch with the Directors of each of the ILD clinics in Ottawa, Kingston, Toronto, Hamilton and London, to help us gather the necessary data for the proposal budget and to outline their expectations for efficiencies and care improvements, if these additional nurses are funded.

“Although the current Ontario government is focused on reducing expenditures,” says Lee, “the Ministry of Health is also focused on efficiencies and reducing ‘hallway medicine.’ We believe our proposal will satisfy all of these government priorities, make a huge difference in improving access to care for our PF community, improving quality of life for patients and caregivers, as well as reducing costs to the health care system.”


Four new support groups

CPFF is pleased to welcome a recently launched support group in Nanaimo, BC, on Vancouver Island, another group that began meeting last October in Kingston, Ontario, and two more support groups scheduled to begin this spring, in Waterloo Region, Ontario, and Sarnia, Ontario. This will bring the number of CPFF support groups to 20 across the country.

Support groups are a wonderful opportunity to learn more about pulmonary fibrosis and to share experiences and tips on dealing with PF for both patients and care partners in an empathetic and supportive environment. Often, guest speakers provide updates on topics of interest.

Most groups meet once a month. Some hold additional social outings for those interested. Other support groups also take part in CPFF awareness and fundraising events. “Most participants find it an empowering and satisfying experience,” says Sharon Lee, CPFF Executive Director.

Come and meet the people who are “walking in your shoes” and learn more about living your best life with PF.

Here are the details for the four new groups:

Vancouver Island BC Support Group

Co-leaders:

Contact: Dr. Holly Smith, email hollyjeans@shaw.ca, phone 250-245-3100

Co-leader: Martha Hardy mjhardy@shaw.ca.

Meetings are held the first Monday of every month from 10 a.m. to noon.

Location:

Nanaimo Regional General Hospital, Room P102

200 Dufferin Crescent,

Nanaimo, BC V9S 2B7

Kingston Support Group

Contact: Blaine Jelley, email Blaine.Jelley@cogeco.ca, phone 613-967-8107

Group leader: Lyn McCarthy respipf11@gmail.com

Meetings are usually held the second Friday of the month from 11 a.m. to 1 p.m. The next meeting is March 13th.

Location:

Kingston, Frontenac, Lennox and Addington Public Health Unit

227 Portsmouth Avenue

Kingston, ON, K7M 1V5.

Sarnia Support Group

Contact: Tim Brady, email bradyt215@gmail.com, phone 519-652-7254

Group meets the third Thursday of every month, except December, from 7 p.m. to 8:30 p.m. The first meeting will be held March 19, 2020. Please RSVP with Tim if you plan to attend.

Location:

Lochiel Kiwanis Community Centre

180 North College Avenue

Sarnia, ON, N7T 7X2

Waterloo Region Ontario Support Group

Contact: Peter Newton, email newtonp51@rogers.com, phone 519-222-0950

Meetings will be held the second Tuesday of each month from 7 to 9 p.m. (beginning May 12, 2020)

Location:

Langs Community Health Centre, Room S206

1145 Concession Rd.

Cambridge, ON, N3H 4M7

If you think enough people in your community could use a CPFF support group, check out the CPFF Patient Education and Support Group Toolkit. It will assist you in planning, sharing and executing a patient support group in your community in person or online. And don’t hesitate to contact Sharon Lee at sharon@cpff.ca about your plans to find out how CPFF can help you get started.


Two 11-year-old girls to raise awareness and funds to honour a Grandpa

Kira MacDonald, left, and Taya Litke are raising awareness and funds for pulmonary fibrosis in honour of Taya’s Grandpa Lloyd Reid

Later this month Taya Litke and Kira MacDonald will be selling baked goods at Mackenzie Highlands School in Calgary to help raise awareness of pulmonary fibrosis and funds for research into the disease. And in April they will take part in the school’s Take Action Fair, where they will set up a display booth in the school gym for the same purpose, along with classmates, who will be doing the same for their chosen causes.

It’s all part of a year-long, grade-six, school project to foster community involvement. Taya and Kira are best friends, schoolmates and play on the same Ringette team. It was only natural that they work together on this project to honour Taya’s Grandpa Lloyd Reid.

Lloyd Reid and his grand-dog Mocha enjoy an outing last September at the Clarke Walk for Pulmonary Fibrosis in Calgary, Alberta

When they started the project last September, Taya and her family had recently joined Lloyd Reid at the Clarke Walk for Pulmonary Fibrosis in Calgary. “He really enjoyed that day,” says his stepdaughter Katherine Litke. “He always had a very positive attitude, despite the challenges of living with IPF for almost four years.”

Sadly, Lloyd succumbed to his disease three months after the Walk on December 17, 2019, just days before his 84th birthday. His passing made the girls project even more personal and emotional.

In her project journal, Taya wrote the following:

Kira and I have chosen this Foundation (CPFF) for a very important reason. My Grandpa. Lloyd Reid had IPF. He had it for years and no one knew. When he was young, Lloyd worked both on the family farm and for the government, building roads. He breathed in grain dust and toxic fumes in the air. Back then, there was no requirement to use masks for safe breathing, so my Grandpa had to consume this air. My Grandpa is gone now. He passed away on Dec. 17. So Kira and I would like support this cause in memory of my Grandpa.

If you want to help Taya and Kira honour Grandpa Lloyd Reid’s memory, visit their webpage on the CPFF website and make a donation.

 


Consider making a monthly donation to support the PF Community in Canada

For about the same amount as a daily cup of coffee, you can make a major contribution to fund a CPFF support group for people living with the disease and their care partners. Just three people making a monthly donation of $35 will fund a support group for a year. What a difference your donation will make to their daily lives.

Research into new treatments, and ultimately a cure, is the prime source of hope for the PF Community in Canada. Sixteen people making a monthly donation of $100, or 32 people making a monthly donation of $50 will fund a specific research project for a year.

CPFF’s Robert Davidson Research Fellowship funds eligible respirologists who wish to further their training in PF in order to advance knowledge in the field and deliver excellence in clinical care to the PF patient community in Canada. At least 75 per cent of the Fellow’s time must be protected for research-related activities. The one- or two-year Fellowships advance our knowledge and improve access to specialist care. A monthly donation of $50 from 150 people will fund a Robert Davidson Fellowship for a year.

“You’ll be surprised how much a monthly donation can make a difference to people living with PF, as well as the impact it can have over the year on your tax bill,” says Sharon Lee, CPFF’s Executive Director. Consider this donation option today. If you need more information, contact Sharon Lee at Sharon@cpff.ca.