Phyllis Della-Latta

The high caloric diet & supplements like Ensure are good suggestions but many PF patients have lost their appetites & cannot consume a lot of food. It is very depressing when weight loss continues despite your best efforts. My husband didn’t even want to look at himself in the mirror.

Incurable, debilitating, fatal, underdiagnosed,

Another harsh reality of lung transplantation is susceptibility to infection by bacteria, viruses and difficult to treat fungi or non tuberculous mycobacteria. Infections can be a major cause of graft failure. Due to lifelong immunosuppression, transplant patients are prone to develop infections that are often innocuous to immune competent people.…[Read more]

Please note that vasoline should not be used in the nose because it is a petroleum gel product. Seek gel that are petroleum free. Be well.

Gail,
For diagnosis of pulmonary fibrosis you need a CT Scan, pulmonary function tests & possibly a  biopsy. Make sure your primary clinician is a pulmonologist who is knowledgeable about PF & IPF. X-rays are not useful for PF diagnosis. Good luck.

Kathy, I was in error of posting that there is a nebulized form of Ofev. I do not believe there is one. A participant on this forum posted that there is an ongoing clinical trial, in the UK I believe, with Esbriet. I called Genentech USA, the manufacturer of Esbriet,  to ask if there were clinical trials in the US and they said there were none.…[Read more]

Thank you Bernard for the correction! Nebulised Esbriet should alleviate the nausea & GI side effects. Hope it will become FDA approved in the US. My husband has inflammatory bowel syndrome & the pulmonologist has been hesitant to prescribe the anti fibrotics, especially Ofev.
Hoping that 2022 will see an end to this pandemic!

Excellent news that there is now a nebulised formulation for Ofev. It’s about time. The gastrointestinal side effects of these drugs are dreadful, necessitating an alternate route of administration. The companies should investigate intradermal or intramuscular as well as the nebulised form. Any route of delivering the drug is better than the GI r…[Read more]

Jeff, Yes, PF has been detected not only in COVID “long haulers” but those survivors who were on ventilators. In addition, veterans who were exposed to “burn pits” where plastic & other toxins were burned also exhibit pulmonary fibrotic disease. It fact, the latter was featured on a TV episode in Grey’s Anatomy here in the US. Awareness will hope…[Read more]

Tom, Sorry to hear you needed pulmonary surgery. I am sure you can start your exercises alittle at a time. BTW, we live in NYC.

Judy, you are blessed to be able to live life to the fullest. So glad your PF is not progressing. Keep living life to the fullest.

It is very disappointing that the manufacturers of Ofev & Esbriet have not researched an alternate route of transmission of these drugs (i.e.transdermal)or at least alter the drug formulation to decrease these side effects. When taken orally they wreak havoc on the gastrointestinal tract, upsetting the microbiome. Tolerating the dreadful side…[Read more]

Roseanne, elevation of the upper torso is helpful in sleeping through the night. My husbands sleep dramatically improved since we purchased a bed that elevates the upper torso. An additional advantage is prevention of micro aspiration of gastric fluid (asymptomatic or symptomatic GERD) into the lungs which is thought to contribute to the scarring…[Read more]

Pete, Pulmonary Fibrosis has been an unfortunate complication that some COVID  patients, particularly those who have been on a ventilator, have experienced. Perhaps COVID funding will be utilized to pursue research into curative PT medications. We can only hope.

I would not rush to use the N115 nasal spray until it is FDA approved and there until there are peer reviewed scientific publications to substantiate its claims. I contacted the Pulmonary Fibrosis Foundation team voicing my concerns when the article first appeared in the Oct 11 PF News. A nasal spray that can increase the FEV1/FVC ratio from 52%…[Read more]

Hi all,

I was told by my husbands  pulmonologist & that raising the head of the bed 4-6 inches is ideal to reduce symptomatic or asymptomatic GERD. It can prevent microaspiration to the lungs which is thought to worsen the fibrotic progression. I was thinking if buying the sleep number bed where the head (& foot) elevation is adjustable. There…[Read more]

My husband was diagnosed with Pleuroparenchymal fibroelastosis (PPFE). He has a chronic cough and no symptoms of GERD. However, we were considering purchasing a Sleep Number bed with a FlexFit adjustable base for head elevation due to the correlation of GERD with IPF. Although a causal relationship has not been demonstrated, the hypothesis that…[Read more]

The link below opens to a good article providing scientific evidence for the association of GERD with IPF. Also it includes good references. I tried posting the references but this website won’t send them for some reason.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6733342/pdf/tcrm-15-1081.pdf

Great! I will do some searching as well.