Pulmonary Fibrosis News Forums logo
  • Home
  • About Our Forums
  • Forums
  • Groups
  • Members
  • Activity
  • Search
  • What can we help you find today?

Phyllis Della-Latta

Home Members Phyllis Della-Latta
show less show more
Profile picture of Phyllis Della-Latta

@pd232columbia-edu

  • Activity
  • Profile
  • Friends 1
  • Groups 0
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Groups
  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Why do IPF patients lose weight and how to help in the forum Join the Discussion: Welcome to all PF/IPF Patients 7 months ago

    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.

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 8 months ago

    Incurable, debilitating, fatal, underdiagnosed,

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic The Harsh Realities of Lung Transplantation in the forum Pre/Post Lung Transplant 10 months, 1 week ago

    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]

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Help for High Oxygen User Nasal Pain in the forum Using Our Forums 12 months ago

    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.

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Newby in the forum Join the Discussion: Welcome to all PF/IPF Patients 12 months ago

    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.

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Prospective change of meds: OFEV to Perfenidone in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year ago

    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]

  • Profile picture of Amy

    Amy and Profile picture of Phyllis Della-LattaPhyllis Della-Latta are now friends 1 year ago

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Prospective change of meds: OFEV to Perfenidone in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago

    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!

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Prospective change of meds: OFEV to Perfenidone in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago

    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]

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic When will first treatment to repair scar tissue become available to humans in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago

    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]

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Pulmonary Rehabilitation in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 1 month ago

    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.

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic When will first treatment to repair scar tissue become available to humans in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago

    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.

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic abdominal cramps with Ofev in the forum Ofev (Nintedanib) 1 year, 1 month ago

    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]

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Pulmonary Rehabilitation in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 1 month ago

    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]

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic When will first treatment to repair scar tissue become available to humans in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago

    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.

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic N115 nasal spray in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 3 months ago

    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]

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Coughing in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago

    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]

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Coughing in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago

    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]

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Coughing in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    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

     

  • Profile picture of Phyllis Della-Latta

    Phyllis Della-Latta replied to the topic Coughing in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    Great! I will do some searching as well.

  • Load More
Profile Photo Brendan

Login

Register

Search forums

Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
Search in posts
Search in pages

Who’s Online

There are no users currently online

Newest Topics

  • The Importance of Patient-Centered Care by Charlene Marshall
  • How Can Others Support Those Living with PF? by Charlene Marshall
  • Any Poetry Lovers Out There? by Christie Patient
  • Who Has Inspired You? by Charlene Marshall
  • Has anyone seen the film “More Than Ever” about an IPF patient? by Frank Bigley

Recent Replies

  • The Importance of Patient-Centered Care
  • Covid causing pulmonary fibrosis
  • Any Poetry Lovers Out There?
  • Covid causing pulmonary fibrosis
  • Love Letters

Members

Newest | Active | Popular
  • Profile picture of Samuel Kirton
    Samuel Kirton
    Active 43 minutes ago
  • Profile picture of Ozzie
    Ozzie
    Active 1 hour, 24 minutes ago
  • Profile picture of Mindy
    Mindy
    Active 1 hour, 47 minutes ago
  • Profile picture of Gregory Bambenek
    Gregory Bambenek
    Active 2 hours, 13 minutes ago
  • Profile picture of Kaye-Maree Hollingsworth
    Kaye-Maree Hollingsworth
    Active 3 hours, 29 minutes ago

Forums

  • Coronavirus (COVID-19) and Pulmonary Fibrosis
  • Healthy Recipe Sharing
  • Hobbies & Projects
  • Polls & Quizzes
  • Using Our Forums
  • Flash Briefings & Podcasts
  • Join the Discussion: Welcome to all PF/IPF Patients
  • 30 Days of PF
  • In Loving Memory
  • Wednesday Wins
  • Diagnosis​ ​Information​ ​and​ ​General​ ​Questions
  • Caregivers and Spouses
  • Employment & Pulmonary Fibrosis
  • Clinical Trials
  • Research and Development
  • Esbriet (Pirfenidone)
  • Ofev (Nintedanib)
  • Canadians Living with Pulmonary Fibrosis
  • Pulmonary Fibrosis Awareness & Advocacy
  • PF Caregivers, Family Members & Spouses
  • Living with Pulmonary Fibrosis: 50+
  • Pre/Post Lung Transplant
  • Young Adults Living with Pulmonary Fibrosis (40 & Under)
  • Upcoming Medical Appointments: Q&As
  • Most popular topics
  • Topics with no replies


Pulmonary Fibrosis News Today

BioNews Services, LLC
3 W Garden St
Suite 700
Pensacola, FL 32502
Email: [email protected]
Phone: +1-800-936-1363
  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • Advertising Policy

Disclaimer

Pulmonary Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

BioNews, Inc.

3 W Garden St
Suite 700
Pensacola, FL 32502
Website: bionews.com
Email: [email protected]
Phone: 1-800-936-1363

  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • Advertising Policy
Disclaimer

This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Copyright © 2017-2023 All rights reserved.

©[current-year] KLEO Template a premium and multipurpose theme from Seventh Queen