Tagged: chronic illness, community, data, IPF, lung disease, PF, support, support group, survey
- This topic has 6 replies, 4 voices, and was last updated 4 years, 4 months ago by Charlene Marshall.
January 18, 2019 at 6:41 pm #16156
I hope this note finds you all doing well and having had a nice week.
Some of you have been asking me for an update on the status of a new initiative that BioNews is trying to see if we can bring to fruition, which is the online PF News support group. I’m happy to report that I had a great conversation with one of the staff at BioNews helping me with this, where we reviewed the data compiled from the surveys you completed on our main PF News page. Thank you for your time and attention when completing those survey’s, it really gave us some great data to work with!
It looks as though we are going to go ahead with this initiative, pending we can find a platform to use which will honour the top choice of how to offer the support group: a live Q&A with a facilitator and max number of participants. Our hope is that while we have to limit the number of “active”/contributing participants in each support group (to ensure everyone gets a chance to contribute), we can offer an unlimited number of observers to the online support group so they can be aware of the conversation taking place and hopefully ask their questions on the forum after the support group. The topics will vary, and be different for each support group, so it will be beneficial for you to take a look at the schedule (coming soon!) and join us for the topic(s) most relevant to your experience of living with IPF/PF.
More details: we hope to offer this on a bi-weekly basis, on a week day evening starting in early March. The goal will be to run it for 8 weeks at a time with varying support group topics for 3 months. Then, if it goes well and the platform we try out sufficiently meets the needs of our participants, we’ll run another group later in the year. The support group topics will come from the data you so generously gave us in the online surveys. Note: if you still want to contribute/complete that survey it is on our PF News main site, near the bottom of the page on the right hand side.
What do you think of the plans for this initiative so far?
Do you have any further information that might help us meet as many needs as possible for this project (recognizing it is impossible to meet the needs of every single person)?
I hope this provides some information / an update for those wanting to know more about this new initiative. I will be promoting it on our forums as soon as we have a few more wrinkles ironed out. Stay tuned and thank you for being part of this wonderful online community!
January 20, 2019 at 8:32 am #16166Barbara SchwenzerParticipant
I’m new here, so don’t really understand how this works, but I am thrilled to have a forum like this to share how we cope with IPF. Thank you to Charlene & other moderators/admins (?) for doing all that you do to keep us organized!!! ?
I will definitely complete the survey.
Have a great day, everyone!! ?
January 20, 2019 at 9:06 am #16171
No problem – you’re doing great, as I got this post and your reply on my welcome message too! It takes some time to learn how to navigate this site, but once you get it, it becomes quite a bit easier. Feel free to reach out any time if you have any questions, I can help you learn the forums too and we have some posts available as well for those just new/getting used to how to use this platform: https://pulmonaryfibrosisnews.com/forums/forums/forum/using-our-forums/
Hope this helps!
The PF support group is still in the works, but it looks like we’re going to proceed which is really exciting as we conducted a survey and many patients said they would find this type of support helpful. Definitely feel free to fill out the survey with your input too Barbara, that would be great. I’ll keep everyone posted on when we plan to start it, that is my goal for today: to get some support group work done so I’d better get at it 🙂
January 22, 2019 at 11:10 am #16186Chuck HarrisonParticipant
Hi Charlene ,
you know me , I’m in !
So let me give you a slight update of progress , last week I had my 3 month appointment with my pulmonologist , and catscan , the results are that my IPF has stayed the same , no movement . ? . So what I’m dealing with mostly is the side effects of this disease .
ive decided at the suggestion of the Doctor have contacted the Cleveland clinic . They called a few days ago and had my first interview over the phone. But I’m not sold on a transplant , reason ? Well when I first inquired about this I was told I was not eligible . So I’m going to go thru the process of test and such and make a decision from there . I’ve had a lot of surgeries since 2010 and recovery has taken longer with each surgery .
soooo , we shall see !
January 24, 2019 at 2:40 pm #16210
So great to hear from you, and I am so glad to hear you’re in for the support group. We’d love to have you and we’re just ironing out some final details, which I find really exciting 🙂
I’m really happy to hear that your disease has been stable, that is such great news! I know the side effects can be really unpleasant to deal with, but I am so glad the fibrosis hasn’t progressed. Due to this, did they make any adjustments to your medication regimen or keep everything status quo?
Really interesting to hear that the doctor suggested you connect with the Cleveland Clinic. I’ve heard lots of good things about them, but absolutely, transplant is such a personal process. I don’t blame you for not being sold on it, I am skeptical about it too if I am honest. I actually just wrote a column (not published yet, but will be soon) on the major considerations of transplant and why it can be so overwhelming. Therefore, I don’t blame you at all for seeking out all the information, tests, etc before making a decision. When will you have all of those completed? I know that process can take a lot of time.
Thinking of you my friend, and do keep me posted 🙂
January 25, 2019 at 9:21 am #16216paulaParticipant
Count me in as well.
@Barbara Schwenzer Welcome aboard. Glad you have found your way here. You will find a ton of support here and no question is silly or dumb. Many of us have either experienced what you may encounter, or know someone who has and we (I say this with with great assurance) are more than willing to help with suggestions or ideas and even more importantly, we offer an ear to listen to your concerns, fears or whatever you may be feeling at any given moments. Family and friends are great support but as much as they try to help, they are not going through what you are. As I like to say, we all share the common thread of IPF. We get the ups and downs.
January 26, 2019 at 9:28 am #16237
So glad you’re in as well Paula! I think you’ll have such valuable contributions that are helpful for other members, similar to the way you just so kindly welcomed Barbara. I’ll keep you posted as soon as we find a good platform to use, our team is currently exploring those options with the hope of starting in March!
Thank you for welcoming Barbara to our wonderful online community, and offering to support her however we can. I echo all of Paula’s words Barbara, and I’m so glad you’ve found us. Feel free to connect anytime!
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