The ‘Logan Boulet Effect’ and Its Impact on Patients with PF
Most Canadians will remember where they were when they heard the news of the Humboldt Broncos bus crash on April 6, 2018. The Saskatchewan-based hockey team was traveling to a playoff game when their bus collided with a semitrailer. Of 29 people onboard, 16 died of their injuries, and 13 survivors were left with life-altering emotional and physical injuries.
With hockey being “Canada’s game,” our country was devastated by the loss of these young athletes and their coaches. The entire country mourned, from the west coast to the east. We marked the one-year anniversary of the tragedy last week.
You might be asking, “What does this story have to do with pulmonary fibrosis, Charlene?”
My response is that sometimes out of the depth of tragedy comes a deep sense of purpose to bring good to others. This is what happened with the “Logan Boulet Effect.” Logan was a member of the Broncos team who died on April 7, following the crash. His parents knew of his wishes to become an organ donor and they made the selfless decision to donate his organs, saving six people. April 7 is now “Green Shirt Day” to honor Logan and the Boulet family, who have inspired over 100,000 Canadians to register as organ donors. Logan Boulet has shone a spotlight on the importance of organ donation.
As patients with PF, we hear upon diagnosis that there is no cure for this life-threatening disease other than a lung transplant. I use the term “cure” loosely because life post-transplant is complicated. Essentially, receiving a lung transplant is like swapping one disease for another when it comes to the management and post-op care that is required to prevent organ rejection. However, if it is the only means of survival for patients with PF, many are willing to take that trade-off.
Connect with other people and share tips on how to manage PF in our forums!
While I do not know any of the Humboldt Broncos players personally, Logan’s decision to be an organ donor touches me directly. I would benefit from organ donation, and I have already received assistance through the selfless acts of others, including blood donors. Raising awareness about the importance of organ donation in Canada is a personal mission of mine as a patient with PF. Despite the majority of Canadians (almost 90 percent) agreeing with the importance of organ donation, just 23 percent have registered their intent to donate. I have seen friends die while waiting for a transplant. My appreciation of Logan’s decision to donate his organs runs deep, and I am incredibly grateful to his family for their generous decision.
So, how does Green Shirt Day affect Canadians living with PF? Awareness events took place across the country on April 7, and businesses jumped on board to share the message of Green Shirt Day, which aims to continue Logan’s legacy and encourages Canadians to make their wishes known to friends and family and sign their donor cards. Funds raised at events held on Green Shirt Day will go to the Canadian Transplant Association (CTA), including a portion of the sales of Green Shirt Day T-shirts, which can be purchased here.
The CTA supports all patients awaiting organ transplants across the country. Programs include assistance to post-transplant patients. The organization hosts the Canadian Transplant Games and participates in the World Transplant Games, offering donors, their families, and organ recipients the opportunity to come together to participate in these events. The association’s advocacy efforts and organ donation awareness campaigns will benefit thousands of patients waiting for a transplant across the country, including many of those living with PF.
The Humboldt Broncos bus crash and Logan Boulet’s decision to donate his organs have had a profound impact on me as a patient with PF. Perhaps my wait for new lungs won’t be as long as it might have been without Logan’s impact. I am so grateful for Logan Boulet and the effect he has had on Canada’s organ donation rates. I wish he were here to see this outcome in person. May he rest in peace.
***
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Carolyn Conner
Hi Charlene,
That was such a helpful reminder of how important donors can be for transplant recipients. The families in their despair will often feel better knowing that their family member's death hasn't been in vain. My ex-husband was a renal transplant surgeon and medical director of a Tissue Bank in Va. I have been to many affairs where the patients and donor's family have made speeches on this impact. So thanks so much for reminding us all of the great contribution that donor's do to lung transplant recipients. I hope that you can get your transplant soon!
God Bless,
Charlene Marshall
Hi Carolyn,
Thanks so much for reading my column and getting in touch via the comments. This was a very special topic for me to write about, and I appreciate hearing from others that it was a good reminder for them too. Logan's impact really highlighted the importance of organ donation in Canada and I am so thankful for this! Thanks for sharing your appreciation of the topic as well; we certainly need to advocate ongoingly for the importance of organ donation. Best wishes to you!
Charlene.
Carmela
hi Charlene,
Touching memorial to the players-the ability to save another life. I am a full body donor for the purpose of research about IPF. It's a different kind of donation, but hopefully lives will be saved.
Charlene Marshall
Hi Carmela,
Thank you so much for reading my columns and getting in touch via the comments. It's nice to hear from you! I agree, such a touching memorial and a great story to advocate for the importance of organ donation. Equally, donations towards science help us advance medicine too so that is also important. Good idea to consider, thank you for sharing!
Charlene.
Dorothy
Hi Charlene, I’m a 61 year young female, so I thought:) Three weeks ago I was very sick and wasn’t getting better with the amoxicillin I was given. So, I was then prescribed a Z-pack which I took for 5 days. In the meantime my Dr. took and X-ray which showed a spot on my right lung. The diagnosis was pneumonia. Today, I had another X-ray and the spot has since cleared up. But, Doc told me that I have COPD & Fibrosis. Didn’t know what they were, so I too, looked them up on the internet. And, that’s how I found you. I’m in shock, to say the least! Don’t know where to go from here. I was also diagnosed with a mitral valve prolapse over 30 years ago and now this. I’ve noticed that the last year I’ve had a lot more mucus, especially when I lay down, and thinking back, I’ve noticed that the past couple years I get winded much easier. I thought some of that was due to me being laid up for 3 months after surgery a year ago from a trimalleolar fracture. I figured all that laying around just weakened my muscles. Well, I’ve been back to work now for 9 months and am stronger, but still get winded going up and down the stairs or with too much exertion. In one of the emails I read, it said something about treating COPD in instead of Fibrosis, could you clarify that for me please. And, I’m not clear on Cystic Fibrosis vs Pulmonary Fibrosis, reading all of the different diagnoses is very confusing. Is it possible that I was misdiagnosed? I know this is just a forum, and not to be mistaken with medical advice from a professional, but I just need to talk to someone. Sometimes it’s better to speak with someone other than a professional. Thank you for reading and hope to hear from you soon! Hope all is well with you!
Charlene Marshall
Hi Dorothy,
Thank you so much for reading my columns and for getting in touch via the comments. So sorry to hear of your recent diagnosis of COPD and fibrosis, do you have any follow up appointments coming up? It is tough news to digest, and there are often follow up scans and tests that help the physicians further understand what kind of fibrosis and/or the staging of the lung disease. Do you know if this is happening for you soon? There are over two hundred types of interstitial lung diseases, with and without fibrotic tissue appearing in scans so it is important to identify which one it is since the treatments for them are different. I'd advocate for another appointment to try and get a few more answers. I don't think you've been misdiagnosed when it comes to having Cystic Fibrosis (CF) as opposed to pulmonary fibrosis (PF) as CF is usually diagnosed shortly after birth. It is characterized by mucous as well, as opposed to fibrosis and often involves more than one system. Usually it includes the digestive system and the lungs, which makes it easier to diagnose young. You can certainly ask your physician about this, but likely it isn't CF. I think my best piece of advice would be to connect with your physician and ask for additional scans: a good one being a high-resolution CT scan. This helps clearly see into the lungs and is usually required for a diagnosis of PF, but not always. Can you follow up with them? Let me know if I can help any further, and please don't hesitate to connect with me further with any other questions. Please do keep in touch and let me know how you're doing.
Warm regards,
Charlene.
Mendy Allen
Hi Charlene,
Thanks so much for sharing the information and a great article. Such a testament to this young man who gave such a gift to others. My Dad was diagnosed with IPF back in 2012 and has been doing very well until this year. My grandfather died of the disease at the age of 56. My Dad is 80 but is otherwise great health and looks like he is 65. He is exploring all options now as he and the family feel he has many more years to live.
I am an organ donor. I would like to know if you are aware of any campaign to educate folks like this in the US? It’s hard to sit back and watch my Dad struggle. I want to do something bigger. There are many people out there that not only need lung transplants but other transplants. Please let me know if you can advise on information in the US on a day like has been created in Canada.
Charlene Marshall
Hi Mendy,
Thank you so much for reading my columns and getting in touch via the comments. Glad you liked my article! Yes, Logan Boulet and the increase in organ donor registrants sure has made a difference to many Canadians awaiting transplants. Sorry to hear of your Dad's diagnosis, and that your grandfather had this disease as well. It is relentless sometimes, but glad your Dad is doing pretty well and exploring all the options to extend his life.
I'm unfortunately not well versed in the area of organ transplantation in the US, as I am Canadian. UNOS (United Network for Organ Sharing) is likely your best bet to start, as I believe they are the biggest transplant program in the US. The Lung Transplant Foundation might also be a good place to start, I know they have their mentorship program which might be good for you to consider once your Dad has gone through it :) Hopefully these help, kudos to you for wanting to give back!
Warm regards,
Charlene.