An Updated Pulmonary Fibrosis Information Guide

The Pulmonary Fibrosis Foundation has released their new Pulmonary Fibrosis Information Guide.

From the presser:

The Pulmonary Fibrosis Foundation (PFF), the leading pulmonary fibrosis (PF) resource for patients, their families, and the medical community, has announced the publication of its new Pulmonary Fibrosis Information Guide. The guide provides patients and families with up-to-date information about pulmonary fibrosis, treatment options, and ways of maintaining one's health while living with the disease. "Pulmonary fibrosis can be a confusing diagnosis," said David Lederer, MD, the PFF's Senior Medical Advisor, Education and Awareness. "Information available online and through other sources is not always accurate. Our new Pulmonary Fibrosis Information Guide was designed to provide clear, accurate, easy-to-understand information for people living with PF and their caregivers."

Dr. Lederer, quoted above, has long been the go-to source for easy to understand information about pulmonary fibrosis and idiopathic pulmonary fibrosis. His blog is a great resource for all of us and he was very supportive during my own journey with IPF.

Here is the guide:

Pulmonary Fibrosis Information Guide by the Pulmonary Fibrosis Foundation

I've read it and it really is a great resource for anyone affected by pulmonary fibrosis.  Head on over to the Pulmonary Fibrosis Foundation to find information about support, finding care, and connecting with others who are walking this same path.

Pulmonary Wellness - How to Live Better With Pulmonary Fibrosis

We were very fortunate to have Dr. Noah Greenspan of the Pulmonary Wellness and Rehabilitation Center in NYC join us at our N. Texas PF Warriors support group meeting this morning.

Dr. Greenspan did not talk about progression of disease, prognosis, genetics, or even much about the future of treatments.  What Dr. Greenspan did talk about was how to live life to the fullest with pulmonary fibrosis.  He talked about exercise, supplemental oxygen, diet, infection control and the importance of pulmonary rehabilitation. Dr. Greenspan gave us all the time we wanted, and was still going strong answering questions when I have to leave.

Here are two vids of today's program.  We had to break it up into two parts due to all the time he spent with us.

If you have pulmonary fibrosis, are helping someone with PF, or even if you are involved as rehabilitation provider for folks in the PF community, you should take the time to watch these videos.

Pulmonary Wellness with Dr. Noah Greenspan, Part 1

Pulmonary Wellness with Dr. Noah Greenspan, Part 2

I can personally attest that the ideas that Dr. Greenspan shares in these videos will help folks to live better with pulmonary fibrosis.

Thanks to Baylor Health for providing the meeting space for our event today.

Pulmonary Fibrosis Support Group Meeting - Aug '16

The August meeting of the PF Warriors of North Texas, a Pulmonary Fibrosis support group, was this past Saturday. This month's meeting was held at the Baylor Charles A. Sammons Cancer Center in Dallas. Our speaker was Dr. Joseph Trombello, of the UT Southwestern Center for Depression Research and Clinical Care. Dr. Trombello spoke about “How to Develop the Mental and Psychological Strength to Deal With Pulmonary Fibrosis”

This is an important topic that hits the mark with many people living with Pulmonary Fibrosis (PF), and their caregivers. The world in which a PF patient lives can be a lonely place. Before being diagnosed they have probably never even heard of PF.  If the diagnosis is Idiopathic Pulmonary Fibrosis, the first web search when they get home from the doctor's office is full of nothing but doom and gloom.  Treatment options are very limited and the only hope for a cure is a lung transplant, and not many who need new lungs actually have the opportunity to receive them.  So yes, the mental side of living with a rare and often terminal disease is something that should be addressed.

Here is the audio of Dr. Trombello's presentation:

And here is the .pdf he was talking from.

The audio is much better this time around.  I purchased a microphone designed for sharing conferences and it really helped. If we want to improve on this audio, we will have to upgrade to a wireless microphone and receiver.  That would be nice, but way out of budget.

Following Dr. Trombello's presentation, we broke into a couple of smaller groups, one for patients and one for caregivers, where we could talk about our personal issues and offer each other support.  This was the most important part of the meeting, getting together and being there for each other.

If you would like to attend a support group in your area, the Pulmonary Fibrosis Foundation has a tool that you can use to do so. PFWarrior.com is another great resource for finding support groups in your area.

Pulmonary Fibrosis Support Group Meeting - July '16

Today was the second meeting of the PF Warriors, a North Texas support group.  We had a great attendance and a very informative speaker.  Dr. Corey Kershaw is a part of the Interstitial Lung Disease & Pulmonary Fibrosis Program at UT Southwestern.  Dr. Kershaw spoke about the basics of Pulmonary Fibrosis and other Interstitial Lung Diseases (ILD).

We used GoToMeeting to live stream the presentation for those who could not attend in person.  If you are interested, you can see the slides and hear the presentation.  The audio is not the best, but is understandable. There is feedback from the audio system in the room that distorts it a bit.  I will have to figure out how to improve the audio prior to our next meeting.

 As with any support group, the most important part of the meeting is the community time before and after any presentation.  We have individuals in all stages of their PF journey, caregivers and transplant recipients attending these meetings.  The fellowship is important, we are not alone.

If you would like to attend a support group in your area, the Pulmonary Fibrosis Foundation has a tool that you can use to do so.