There are a plethora of benefits for patients using online social media platforms. They help members of the community connect, and share and receive information about all aspects of the disease.
These forums have been designed specifically with readers and patients in mind. The main goal is to encourage readers to connect, ask questions and engage with the PF community. At times, PF can feel like an isolating illness and the PF forum will offer a more concentrated platform to help readers relate to one another.
Some groups have been designed to facilitate connections and encourage discussion among patients who live in similar geographical locations, or for those who fall within a certain age bracket, or for patients who are either pre- or post-lung transplantation.
Below are some examples of the groups we’ve put together to help members of the PF community connect with one another:
Living with pulmonary fibrosis, 50+: Connect with others living with PF/IPF in a similar life stage as you, and discuss issues such as limited mobility and physical therapy, tips and tricks of managing daily life with oxygen, planning for end-of-life care (if applicable), pain management and more.
Canadians living with pulmonary fibrosis: Canadians have noticeable differences in healthcare and thus, in the treatment of pulmonary fibrosis. This group is for Canadian patients or caregivers (immediate family members or spouses) supporting someone living with PF. Join this group to find information on local support groups, discuss treatment options, medical facilities and more as it pertains to Canadian patients living with pulmonary fibrosis.
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Pre- and post-lung transplantation: This group is for patients living with pulmonary fibrosis who have been referred to a lung transplant program, or who have received their new gift of life. Many patients know that treatment for PF will include a lung transplant, however, this group is for those in the active stages of pursuing transplantation and those who have received new lungs. Discussions will include medication management, physical pre- and post-transplant care, caregiver support and the many ways that transplant can impact a patient and their family, including the mental, social, emotional and psychological aspects.
Young adults living with pulmonary fibrosis: Connect with others living with PF/IPF in the same life stage as you, and feel connected/less isolated when discussing things such as introducing your disease in a new relationship, intimacy and fertility, facing mortality as a young adult and helping others understand your disease.
Caregivers/spouses: Inevitably, pulmonary fibrosis affects caregivers and spouses as much as the patients, and this group is a unique circle of support solely for them. Join to discuss the emotional, social and physical impact of caring for someone with PF/IPF and explore coping techniques from others sharing the same experiences. Share your strategies, and enjoy the comfort and company of others who know exactly how you are feeling as a caregiver of someone living with PF/IPF.
Groups and discussion topics will continue to be developed and built after the launch of the forum, and we hope readers will start their own discussion topics. If you have any suggestions, please feel free to leave them in the comments section below!
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Lung Disease 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 another 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.
This is great! How do you join a forum? I don’t see all of the ones listed above in the list of forums.
Hi Nancy,
Thank you so much for your positive feedback about the forums. I’m really excited, a lot of people have joined us already and I’m eager to start seeing some discussions and interactions on the forum that are helpful to everyone. To join, please visit: https://pulmonaryfibrosisnews.com/forums/ and then create a profile of yourself and join in on the discussions! You will have the option to join whichever forum and/or group is applicable to you, and we look forward to having you. If you have any questions, please don’t hesitate to get in touch 🙂
Thanks,
Charlene
Thank you for a caregiver forum. As a caregiver, and especially in the beginning when I was scared to death, there was a depression that came over me thinking because of the information we found online, that my husband with IPF was going to die very shortly. That isn’t the case anymore, but not many understood. I had one couple, dear friends now, that actually researched the disease, and understood, had the right questions to ask my husband about how he felt. We remain friends with them, but many have moved on because we cannot do the same activities we once did. Life is different, we are working on getting back to what we think of as NORMAL, not the “new normal”. My husband is post transplant and with right lung failure, pre-transplant. So for the last 18 months, after 3 cancelled calls, we are still awaiting a single right lung. We’ve learned to compensate, knowing what he can do and what he can’t and needs to do a bit differently. Thank you
Hi Debra,
Thank you for your positive feedback and for sharing your experience(s) as a caregiver of a loved one with PF. Let me first say, all of our caregivers are our heroes! I can’t relate to the fear that cripples you as a caregiver of someone with a new PF diagnosis, but I can certainly relate to feeling scared to death as a patient being diagnosed. Both situations absolutely warrant fear, depression and upset at the thought of what is ahead.
It is hard to see some friendships waiver as a result of a PF diagnosis, isn’t it? I’ve actually written about this in some of my columns, and I am sure other couples can relate to this as well. It’s so hard because it isn’t like you and your husband are choosing to not do the same activities that you once did; it is so out of yours and his control. There is a wonderful woman who just posted on the PF forums https://pulmonaryfibrosisnews.com/forums/) about caregiving for her Mom with PF, and learning how to “muddle her way through this diagnosis” (her words). I like your thinking about getting back to what was normal for you, but not necessarily focusing on “new normal”.
I’m glad your husband received a transplant, but sorry to hear about the right lung failure and the emotional turmoil that comes with 3 cancelled calls. I will pray that he receives that single right lung soon. Your approach to dealing with all of this is very admirable. Please feel free to connect any time, or join other caregivers on the new PF forum.
Warmly,
Charlene