Join the Discussion: Topics from the PF News Forums
It has been just over a month since the successful launch of the Pulmonary Fibrosis News Forums, and we have many of you to thank. The activity created on these new forums tells us that this type of website has been helpful for patients and that it can be complementary to social media support groups.
As a columnist, I have posted my many questions in the new forums, often finding the answer I am looking for. Additionally, several members have added their own topics, along with shared experiences, relevant literature, and discussion questions. We are happy to see that members, including patients and caregivers alike, are tailoring the use of this site for maximum benefit. This is the purpose of the Pulmonary Fibrosis News Forums: to give everyone impacted by this disease a platform to discuss and share topics about living with PF or caring for someone who is.
One of the hopes for the new forums is to gather and share information about PF in one place. While there is a lot of information online, and more being released daily, there are only a few other platforms where exchanges of patient experiences can be shared, such as on several Facebook pages managed by patients and volunteers. As a patient, I am grateful for all the information that can be found on those platforms. Here are some I recommend:
- Pulmonary Fibrosis Support Group by Breathe Support
- Pulmonary Fibrosis Foundation
- Canadian Pulmonary Fibrosis Foundation
- Pulmonary Fibrosis A Day to Day Survival to Breathe
Ongoing topics in the PF News Forums
Not everyone likes to use social media. So, our forums are ideal for those who want to discuss PF outside of platforms like Facebook. For those who have not yet joined the Pulmonary Fibrosis New Forums but are considering, I wanted to use this column to highlight some of the topics.
- Dealing with Frigid Temperatures: The end of winter cannot come fast enough for me! For those of you living in climates that experience snow or subzero temperatures, you can likely attest that this winter is a cold one. This forum topic was designed for patients to share ideas on how to deal with the cold despite their PF.
- Advice for Newly Diagnosed Patients: We all have had different reactions when it comes to our diagnosis — no one is better or worse than the next. This forum topic is for patients to share their experiences and advice for those newly diagnosed with PF. In this topic, many patients also have shared their thoughts, feelings, and fears about their disease. This discussion topic also has been used to share coping techniques and strategies that have worked for patients since receiving their diagnosis.
- Esbriet and OFEV: These forum topics were created to give patients who are taking either of these therapies a chance to connect and exchange experiences of being on anti-fibrotic medications. Discussions have been about side effects, dosages, and the preferred way of taking the medications.
- Ideas to Help Raise Awareness for PF: I created this forum topic with everyone in mind. From patients and caregivers to researchers, medical professionals, and advocates. We can all play a part in collectively raising awareness for this disease. Some patients have even discovered mutual interests, and are exploring how those interests and skills can be used to help create more awareness for PF.
- Stem Cell Therapy, Familial IPF, and Herbal Uses: These are all topics within the Research and Development forum. This forum is being used primarily to post emerging literature, share experiences with clinical trials, or ask questions about research within the field of PF. With all the research conducted on this disease, this forum will frequently be updated with the publication of more and more research articles and case studies.
Many other discussions are taking place. You are invited to join the conversations or start your own by registering for the Pulmonary Fibrosis News Forums. Registration is quick and easy, and there is no cost to becoming part of this unique online platform for patients, caregivers, or anyone else in the PF community. Thanks in advance for joining us!
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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.
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Comments
S. J. Strong
Attention has recently been brought to the role of lipids in protecting the lung. For many years emphasis has been placed on the suppression of lipids to avoid cardiovascular problems so large numbers of people have been taking statins. Have any studies been done on the effect of long term statin therapy on idiopathic pulmonary fibrosis?
Charlene Marshall
Hi there,
Thank you for reading my column and contributing to the comments. This is an excellent question, and one I cannot answer. I recently read the article released on the role of lipids in protecting the lungs and am currently generating some discussion questions and hope to post the article in our new PF forums: www.pulmonaryfibrosisnews.com/forums . I will post your question about studies on long term statin therapy on IPF in the Research and Development section of the forums and see if anyone knows of any literature so your question can be answered. It is a good thing to consider, and I'm sure many people will share the same curiosity as you have regarding this. Thanks for sharing and asking the questions!
Charlene
Davina Conolly
After my 3rd pulmonary embolism in 2003, I was diagnosed with pulmonary fibrosis and I read that people usually die within 5 years. My specialist has me on blood thinners, prednisone and other steroids that I inhale daily. October 2006 I decided to go with natural treatment and was introduced to Green House Herbal Clinic natural organic idiopathic pulmonary fibrosis Herbal formula, i had a total decline of symptoms with this pulmonary fibrosis Herbal formula treatment. The infections, shortness of breath, fatigue, dry cough and other symptoms has subsided. Somehow, the herbs managed to keep me alive for 13 years.Visit Green House Herbal Clinic official website www . greenhouseherbalclinic . com or email herbs @ greenhouseherbalclinic . com I have had great improvement with my over all respiration with this product and i breath very much easier, i can never be thankful enough to nature
Charlene Marshall
Hi Davina,
Thank you for reading my columns and contributing your comments. I appreciate hearing your story so much, and I think sometimes we underestimate the power of natural remedies. I know they aren't for everyone, but I think I am going to look into herbal options a bit more closely. In my opinion, I don't think they can hurt anything....thanks for sharing the information. I am so glad that you have had much improvement with your PF symptoms, as no doubt this has helped with your quality of life. I am happy for you :)
Thanks again for sharing.
Charlene
Dania Parisé
est-ce que ça existe des machines à oxygène portatifs qui diffusent en continu et plus que 5L
Charlene Marshall
Je ne suis pas sûr de Dania. Ce serait une bonne question pour votre médecin ou fournisseur de service d'oxygène. Ils auraient probablement plus de connaissances sur la machine à utiliser en fonction de vos besoins. Est-ce utile?
Charlene
Katie Broach
Charlene and others, has anyone had an ongoing battle with AFib? Granted I will be 80 next month, in my 5th year w/IPF and still on the well spectrum in most ways, even cough has been at a minimum. I agreed to a blood thinner and then had a brain bleed. I was taken off the blood thinner and now am advised to go back on it to prevent a clot. I far prefer to die of heart than IPF but having gone it alone for 40 years, I fear a clot and being disabled. I've learned my HBP is also a risk even though it is well controlled. My high cholesterol also puts me at risk of heart attack and stroke and it is not under control. Even the gurus are iffy about what to do. The brain bleed was slight and stopped on its on with no losses. I have never been so sick those first 2 days in ICU. Just kept saying to my angel nurse "so sick" and "so scared."
Having no idea what to do, I'm not doing anything but maintaining the status quo, taking the AFib med and trying to avoid the triggers: activity, stress, etc. In general, I can say ICU is the place to be. Once you're on the floor, you're on your own. Better to just go home.
Charlene Marshall
Hi Katie,
Thank you so much for reading my columns and contributing your comments and questions!
This is a really good question, and one that I am confident many other people are wondering about. Thankfully, I don't have many issues with AFib or my heart in general. I do have times when my lung function or oxygen levels are low and thus, my heart is working too hard so I was placed on a medication to help me deal with this for awhile. I keep getting echo's done as well to check for Pulmonary Hypertension, as there have been times throughout this journey when I have been hypertensive.
It does sound like a difficult position for you to be in, I'm sorry to hear that the specialists seem to be a bit unsure as well. This might be a good question to ask members of our PF forum Katie, would you be interested? If so, you can join here:http://pulmonaryfibrosisnews.com/forums/ and post your question. Others might be able to share more insight and there are some wonderful people on the forum who I know will help you if they can.
I agree about the ICU! While it can be terrifying to be there due to being so sick, it also is really comforting knowing what good hands you're in. Best of luck to you, and please feel free to post your question in the forums. There may be some more help that can be shared with you.
Warm regards,
Charlene