B U Singh

Hi Dee,

I am not sure where you are located and you mentioned U of U. I am going to guess that Univ of Utah which is a part of the Pulmonary Fibrosis Foundation Care Center Network. You have a local pulmonologist who has referred you to Univ of Utah. Can I suggest you contact that local pulmonologist’s office again for two reasons:

– Your local…[Read more]

Have you tried the U.S. clinical trials site? There is also a matching tool for clinical trials on the Pulmonary Fibrosis Foundation site. Most convenient though you will find a Clinical Trial page at Pulmonary Fibrosis News on the top banner of the page.

Sam …

Charlene – I would offer a couple of comments. First, consult your care team on any supplements you should be taking with Ofev. I am not sure where you are located. The Pulmonary Fibrosis Foundation has a support group locator on their website if you are in the United States.  You can search based on your zip code. The PFF also has a monthly…[Read more]

Paul,

Your first step might be to contact your oxygen provider. My provider was a national company in the U.S.. I could schedule trips ahead of time to have a concentrator delivered to where I was staying. Alternatively, there are companies who work to deliver oxygen equipment to cruise ships for example. While not an endorsement, one that I…[Read more]

Charlene,

I have bone density issues primarily related to prednisone. I now have to get a Dexa scan annually. I take 800 units of Vitamin D daily which has helped show signs of improvement in my bone density. My prednisone has also been tapered to 5mg daily except during exacerbations. There is a paper from 2018 on the NIH site titled…[Read more]

The pulse system provides oxygen only when you inhale while a continuous flow source such as a tank pushes oxygen without being triggered by a breath.

If you are already at 2lpm the Inogen G5 will not provide that level of oxygen. I suggest you Google the Inogen G5 technical manual. There is a table in the manual that translates their settings to…[Read more]

The short answer is yes it will. I would also suggest you do your research on a POC. A shoulder-carried POC will not provide continuous flow oxygen at 2lpm.

I am not sure what your diagnosis is other than PF. I am an IPF patient currently 19 months post-transplant. The relationship between shortness of breath and oxygen saturation levels rarely correlates to provide a meaningful diagnosis. As you have demonstrated, increased shortness of breath does not indicate a low oxygen saturation level. Both are…[Read more]

Charlene,

The good thing about advocacy is there is a role for everyone. For RDD this year I focused on the power of many voices uniting for a common goal. I spent a part of the day working on appropriation requests for government funding of more research in support of the rare disease community.

Grady,

Thanks for sharing your Dad’s journey through your eyes. Patients and caregivers often speak about how quickly the journey can change and you illustrate that so well.

Sam …

I agree!

Welcome back Katie and thanks for sharing that story. I was also diagnosed at age 59 in January 2017.

Sam …

Good question Christie. Shortly after my diagnosis, I decided surrender was not an option. That decision led to me living my life to the fullest. If you have ever looked at the profile picture here in the Forums or in my column there is a tattoo… Make Every Breath Count runs from my wrist to my elbow. It is also the name of my column here. It…[Read more]

I had a reader of my column looking for a discussion on this topic. I will send him to this discussion.

Sam …

I had the same experience with sun exposure while on Esbriet. I live on the water so I would cover up and use sunscreen to reduce the risk of a burn or skin cancer. My skin would feel like it was on fire if I missed a spot. Sam …

Christie,

Every letter I have written to my donor family has been a love letter (and it does go by snail mail).

Sam …

Charlene

This is a great thread topic. This is one of those topics which can take on a life of its own. This applies to both pre-transplant and post-transplant.

I have always found others in our circle to be helpful but never pushy. If it was a task I thought I was able to accomplish I just had to say I needed to push myself. In other…[Read more]

Christie

I am sharing more about Larry as it relates to our unsolicited but invaluable membership in Club IPF in my column on February 7th.

Sam …

Hi Christie

This is an essential topic for those impacted by PF. Following a recent exacerbation, I am back to walking outdoors on a regular basis. That can be a game of chance in the winter months here in Virginia. I also have a recumbent bike set-up with a great view if I have to move my exercise indoors.

Sam …