To Charlene and everyone else in this group;

I’ve basically been AWOL from the group for several months and must apologize to you all. I was really surprised when I found my long time friend shared IPF; but alas, they didn’t properly diagnose his problem, until it was too late and he passed very shortly after his diagnosis. That hit me… Read more

Charlene, really sorry for your need of ER, let’s all hope you are better really fast. You’re our leader and not supposed to get sick. Hoping for the best and a speedy recovery. Keeping you in our thoughts and prayers.

I’m on my third day of Esbriet and no reaction at all Hopefully things will stay that way as I increase dosage. More… Read more

Well, I guess that I’ll give Esbriet a go, got my first months supply about an hour ago. It has been quite an ordeal getting it. VA is stalling wanting a biopsy despite have two Pulmonologist from different cities saying I have IPF and two different High Resolution Scans, each done in a different facility and different city. But despite the… Read more

David, welcome to our thread. It sounds like you have had some very good support through the VA and I’m really happy for you. I’m still waiting for the Dallas VA to approve the Esbriet for me from a prescription written by a renowned private Pulmonologist on 06/27/2018. It is through sharing of information that we all benefit and will… Read more

Chuck,
It’s Great to have you join into our thread. It will be kind-of nice to have someone a little closer in age; not that 10 years is close. I’m sure that you have a lot that you could share about living with IPF. You indicated that you’ve been stable for 5 years but failed to mention when you were diagnosed with IPF We are hungry… Read more

Gary, thanks for taking the time to join our thread. Sounds like you have access to some really good medical support and at least have a distant support group to reach out to. Your idea of getting a Support Group going via the St. Ritas Medical Center in Lima, sound like a good one. You may have to take the ball and run with it for a while;… Read more

Charlene I can’t believe it, but I failed to respond to your “polling” question; Yes, we should avail ourselves of all tools that help us gather informationto better understand this horrible disease, and to possibly lend a hand in finding a cure.

Caralene, in reviewing past posts, I discovered a commonality between you and… Read more

Ray, thanks for joining into our thread. —But you have given me a delima, where do we position your imaginary location pin; do we make it Conn, or VA, or NC? Just kidding, we’ll show you in NC, as that is likely the area you’d like to find a Support Group in. —A special thanks to you, Ray for taking the time to lead me through… Read more

Piet,
So sorry for your illness and hope you can receive the medical support needed to make your life as fulfilling as possible. Are you taking either of the meds that are approved in the US/FDA to slow the progression of the disease. Here in the USA, our access to meds is controlled by our FDA approval process, which runs the cost of meds… Read more

When I started this thread, I felt that gathering information could lead to IPF/PF people coming together. Well, in my case, it really did! Yesterday evening the phone rang and to my surprise, it was a friend whom we knew as “a dedicated daughter/caregiver” to a couple whom we had met via our participation in the Volunteer Fire… Read more

As the IPF Patients and caregivers have responded to my original post, it has become apparent that I should have asked that each of you specify whether or not you are a Veteran, and if you utilize the VA health care system. Most of the responders have already given this info in telling their story and we appreciate your participation in… Read more

Jay,
Thanks for responding to this broad based question about living with IPF. Your reply made me realize that I did not reach out to “caregivers” the way I should have, and I sincerely apologize. My wife is my caregiver and I don’t know what I’d do without her constant help and guidance. Again, thank you for your response on behalf of your… Read more

James, Thanks for your reply and NO, it was not too long and rambling. We just thank you for sharing and for giving us some insight into your life with IPF. It sounds like you and God are in control.

Would love to hear you play your dobro guitar. If you are ever playing up close to Tyler, let me know and we will try to be there. Also,… Read more

Thanks Cooper for your response; so now, a pin goes in our imaginary map for Utah. Before I forget, “we thank you for your service” and certainly hope that the VA “bellies up to the bar” and puts you on one of the FDA approved medications that have shown to slow the progression of IPF. Those two meds are FDA approved Ofev (nintedanib)… Read more

You may think I’m being nosy; but when you think about it, there is an awful lot that can learned from compiling this information. —So here goes, I’m an 82 year old (very happily married for 62 years and counting) male who lives in rural area of East Texas called Ben Wheeler. My nearest medical facilities are in Tyler, Tx, about 40 miles… Read more