I was fortunate enough to receive a bilateral lung transplant on July 10, 2021. It is the reason I am here today. 

Not everyone will be eligible to receive a lung transplant. The reasons they may not be eligible include age, recent cancer treatment, other comorbidities, or general health. 

If their pulmonary fibrosis is advanced,… Read more

Hi, I live in Tucson. My husband has IPF and is currently doing very well, 3 years stable with no meds. He bicycles regularly and walks the dogs so he does exercise of some kind every day. I am interested in knowing where in Tucson you get your laser treatments? Thanks for your help.

I have been on Dr. Hall’s protocol for cold laser therapy since November ’25 and am down to 1 time per week. I am not scheduled for CT Scan and PFTs until Sept. I am also taking 100mgs of Ofev since Nov ’25 with little to no side effects.

My Chiropractor has another patient taking no medication and the CT Scan showed no advanced fibrosis. …

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Hi Rob J,

While there has been no agreed-upon causality, NIH recognizes that ~90% of those with an IPF diagnosis also have GERD. You can read more here: https://pmc.ncbi.nlm.nih.gov/articles/PMC6733342/

I take ipratropium bromide nasal spray, not for congestion, but for runny nose, generally before lunch and dinner. It works quite well for me.

Flonase and Zertec weren’t very effective for me. My pulmonologist prescribed ipratropium bromide nasal spray. One shot in each nostril and you’re good for 6 hrs. When it wears off spray again. It helps a lot.

I replied to Sam directly as I didn’t think I was on the thread. I have just added omerprazadole twice a day along with the nasal sprays I have been using.

Thank you all for your advice.

Charlotte (Chart)

I was diagnosed with Gerd in 2022 and IPF in 2025. I also have nasal congestion , chronic sneezing, and gastro issues. Reading the comments from so many others there does seem to be some connections with these symptoms for patients with fibrosis. I have been taking Omeprazole & Famotidine to treat Gerd for the last 4 years. Just wondering now…

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Hi JAJ,

In addition to the comments in this thread, you can use the search feature (magnifying glass) at the top of the page. Search for “red light therapy” and “laser therapy”.

Hello! I’ve started laser treatments in tucson az. $60 each or $50 if I pay for 10 up front. Using Dr hall protocols I’m in the 2nd week so to early to tell . I’ve been on esbriet for almost 3 years and seem to be doing OK I try to exercise and stay positive. Can any one else share their experience positive or negative thanks JAJ

Hi Chart,

I am not sure where you are in your journey. Congestion and PND were both routine for me pre-transplant. I was diagnosed with GERD. I had no idea it was occurring. I did take 40mg of pantoprazole twice daily to prevent reflux. I was also prescribed Mucinex, which I take daily.

Sam…

I have constant nasal congestion and PND. I use acid reflux meds when I have it. Now I think I will start taking them daily after reading this discussion.

Has anyone had surgery for a deviated septum or the Clarifix procedure? Has it helped the congestion or your ability to breathe? I am frustrated that breathing is difficult because of…

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Are you using a GLP-1? Post-transplant patients have the potential to develop both kidney disease and diabetes, primarily due to the drugs I take daily.  I developed both. 

I recently wrote about my experience in my column, Make Every Breath Count. My diagnosis of chronic kidney disease 3b, and a spike in my A1C, indicating a higher potential… Read more

I was working on a future column for Make Every Breath Count. When I was searching for sources to support a statement in the column, I went to  Google. When my cursor was in the search box, it showed a list of trending and popular searches. 

It made me think about trending searches a patient or caregiver might use. Do you search for… Read more

Hi Merritt,

Thanks for sharing this. Please come back to let us know if having the doctor require the original becomes an issue.

Sam…

Hi Tamra,

Being a caregiver is hard, and it is hard for a patient to always see it. I know it took me a minute. I hear you about hospice care and what the end of life is like for a patient and their caregiver. Let me have a couple of days to work on that. Have you attended any caregiver support groups? The Pulmonary Fibrosis Foundation has…

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this keeps me continuously focused on non-IPF subject matter and mentally involved in never-ending puzzle-solving

Hi Pixel,

Prior to receiving my transplant, my cough was ever-present and very noticeable. The cough is the most visible external sign of IPF. My cough was on full display when COVID-19 was in the US. My wife wanted to have a shirt made telling others my cough was not contagious. Kill them with kindness and thank them for their concern.

Sam…

Hi Jim,

I had to look up land patent boundaries to ensure I understood the terminology. You enjoy the time, and it is mentally stimulating. That provides a great distraction from your IPF. I am glad you are keeping up the exercise routine.

Sam…

I would like to know why no one talks about the end stages of this horrible disease. My husband is confused, agitated, and scared, despite his deep religious belief in a wonderful after life. How does one deal with the agitation, confusion, and unwillingness to follow the advice of Hospice, i. e. to get a hospital bed, use a Foley catheter, …

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This happened to me too. I got a call from the pharmacy that I needed to put a credit card on file to pay my co-pay for the generic OFEV! I do not have a co- pay with OFEV die to a manufacturer program, so this switch to a supposedly cheaper generic was going to cost me $ 1,8000 per yesr. I called my Dr and switched back!

What frustrates me is when I’m out in public and get nasty comments and looks when I’m coughing. Perfect example was when I had my husband at Wound Care Center for treatment. I started coughing and a couple told me I had no right to come into a waiting room spreading germs! I was so embarrassed I excused myself, left my handicapped husband…

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From a long career of mapping, mostly in geology (mineral exploration in the western US) and the US Defense Department, and now that I’m retired (and afflicted with IPF – I was diagnosed about a year after I retired), I spend most of my time mapping original land patent boundaries for counties in Kentucky and Virginia. These states also…

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In my home province in Canada, not everyone is eligible for the pneumonia or RSV vaccine. There are certain criteria that qualify you to receive the vaccine under the provincial healthcare plan, including being over 65 or being a young infant. Certain medical conditions qualify you as well. 

Many patients, given the median age of people… Read more

I recently reached out to multiple forum members to ask for their direct feedback. We welcome any ideas for discussion topics, accessibility, additional features, etc. I haven’t heard from anyone yet, but I wanted to note that we have a direct messaging feature here. See the screenshot.

 

 

 

 

 

Circled in red above, it… Read more

You and me both mate. I can tell that there are a lot of very smart people working on better understanding this disease and searching for a cure.

Sam…

People go with something they are aware, like COPD for example. It is the reason I work hard to raise awareness of IPF.

Sam…

Hi Jeff,

Patient around the world have started receiving the generic version of the drug, often without any prior notification. There are at least four companines manufacturing the generic nintedanib.

Sam

Hi Captain Jim,

The best way to become involved in clinical trials is to talk with your care team. They are the best immediate lead for clinical trials in your area. If they cannot help you send me a private message here in the forums and I will help you find the information.

Sam…

I have just been sent a letter – here in the UK, that tells me that the license for OFEV has expired, meaning that any pharmacutical can now make a genereic Nintedanib. This is the drug I will now be supplied, a generic Nintedanib, not a BI OFEV one.

Reason, might be cheaper I imagine.

I always get: “Do you have an inhaler”? Or “What can be done”? Or “Can you have a lung transplant”? (Like thats easy…right?) “How did you get it? Stepping away and then saying “is it catching”?

All above I’m sure you have heard before and others i’m sure.

What I would like to hear is this:

I HAVE BEEN WORKING ON SOME RESEARCH AND I HAVE FOUND…

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I guess the question of how I got it doesn’t annoy me as I just say, “pulmonary fibrosis”. I usually have to say, “my lungs are getting stiff, and they don’t know why” based upon the look on most people’s faces because pulmonary fibrosis is not something they hear every day. Most people seem to assume I have COPD when they see me with oxygen. …

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I am on generic OFEV and Jascayd concurrently, each at the strongest dose. I would be very interested in participating in Phase II/III trials for new drugs in this area and would appreciate leads…

I learned early on that I needed to change the way I introduced people to my IPF diagnosis. Shortly after diagnosis, I would tell people that I was diagnosed with idiopathic pulmonary fibrosis. This seemed to prompt the question “How did you get it?” I found that frustrating, but soon decided I needed to introduce it differently.

I… Read more

Kristine makes a great point about the altitude in different cities. Prior to my transplant I flew from my home in the mid-Atlantic part of the U.S. where it is only slightly above sea level. I flew to Johannesburg, South Africa. I had not given any thought to Johannesburg being about the same altitude as Denver. I only made that mistake once.

I had a single lung transplant in 2021. I have had no problem on flights. I checked my O2 sats on plane and they usually were around 92, which is acceptible, probably because activity is limited on flight. I now do have a problem with being in the mountains, however. You need to check altitudes of cities, also – for example Vail,…

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