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

paula

Home Members paula
show less show more
Profile picture of paula

@justme0956

@raymond-c-king Those who knew Ray King, I just wanted to pass along that he passed away 6/14/19. He was in the hospital for another medical issue, developed complications that kept him in the hospital for a month. During that month he developed pneumonia which his lungs were not able to fight off due to the fibrosis. RIP Ray View
  • Activity
  • Profile
  • Friends 3
  • Groups 0
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Groups
  • Profile picture of paula

    paula replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 2 years, 8 months ago

    Thanks Charlene. I think of you often as well. I know your very busy and I hope all is going well for you. Enjoy your trip. I am so jealous.

  • Profile picture of paula

    paula replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 2 years, 8 months ago

    Robert Obrien ( @bobo )

    I was put on the the list the 20th of Aug. (I had my first appointment in April of this year) I was recently bumped from 3 lpm to 8 and it appears that might be bumped up again.  I would call the person you speak with in the team (my contact person is Jill) about how your getting worse to see if you can bump up your being…[Read more]

  • Profile picture of paula

    paula replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 2 years, 8 months ago

    @Roger Mills, I had no side affects with Esbriet. Well for the first 4 – 5 months, then I developed an allergy to it. Then they put me on OFEV. Within 3 months I got diarrhea. Bad. They took me off for a few months to give my body a rest. Then started me back. After a few months the diarrhea came back.

    I am now off of OFEV because I made the…[Read more]

  • Profile picture of paula

    paula replied to the topic Has Pulmonary Fibrosis Changed Your Appetite? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 11 months ago

    @Patricia Williams. Last year I dealt with the diarrhea for 11 weeks straight. Horrible (did not lose one ounce stupid fat fairy). I could not get under control. So my doctor told me to go off of it for a few months (at the time I was on 100 2 times a day) to let my body reset.

    This past Feb I restarted the 100 2 times a day and have learned an…[Read more]

  • Profile picture of paula

    paula posted a new activity comment 2 years, 11 months ago

    In a later email, his son had asked me to pass along the news of Ray passing. I told him I did right after I got his first email. Told him how the three of us emailing each other for the past several months. I also said I hope that the process his mom had made in her recent health issues did not take a backwards step when Ray passed. Like you, I…[Read more]

    View Conversation
    • Profile picture of Charlene Marshall
      Charlene Marshall replied 2 years, 11 months ago

      Me too Paula, me too. Just seems so unfair and hard to believe a comment from him, or that an email won’t pop up into my inbox with his pleasant chatter. I loved corresponding with him! I’m sure he’d want us to continue chatting and keeping his memory alive. I’ll email you back right now, I know I’ve been lacking on that. Thanks again for sharing…[Read more]

  • Profile picture of paula

    paula replied to the topic Has Pulmonary Fibrosis Changed Your Appetite? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 11 months ago

    Hi Robert. I am at MGH as well. Have you been put on the list yet? I am almost done with all of the appointments and with any luck, hopefully I will know by the end of July or mid Aug. I will actually be there 3 times next week.

  • Profile picture of paula

    paula replied to the topic Has Pulmonary Fibrosis Changed Your Appetite? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 11 months ago

    Charlene, I sent you an email this morning regarding Ray.

  • Profile picture of paula

    paula replied to the topic Has Pulmonary Fibrosis Changed Your Appetite? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 11 months ago

    Hi @ Malcolm Mann. My eating habits started changing when I was on Esbriet. I am right now on 100 mg OFEV 2 times a day going over to the 150 two times a day to try and stabilize the progression of the IPF while I am in the process of trying to get on the lung transplant list.

    More than changing my appetite, I find there are foods that I simply…[Read more]

  • Profile picture of paula

    paula posted an update 2 years, 11 months ago

    @raymond-c-king Those who knew Ray King, I just wanted to pass along that he passed away 6/14/19. He was in the hospital for another medical issue, developed complications that kept him in the hospital for a month. During that month he developed pneumonia which his lungs were not able to fight off due to the fibrosis. RIP Ray

    • Profile picture of Charlene Marshall
      Charlene Marshall replied 2 years, 11 months ago

      Thank you for sharing this very sad news Paula. My heart is with Ray’s family during this tough time, I can only imagine the difficulty they are facing. My only hope now is that he is free of pain. I certainly will miss conversing with him and our “three peas in a pod” email exchanges. I am very sad, may you rest in peace my friend Ray. xo Charlene.

      • Profile picture of paula
        paula replied 2 years, 11 months ago

        In a later email, his son had asked me to pass along the news of Ray passing. I told him I did right after I got his first email. Told him how the three of us emailing each other for the past several months. I also said I hope that the process his mom had made in her recent health issues did not take a backwards step when Ray passed. Like you, I…[Read more]

        • Profile picture of Charlene Marshall
          Charlene Marshall replied 2 years, 11 months ago

          Me too Paula, me too. Just seems so unfair and hard to believe a comment from him, or that an email won’t pop up into my inbox with his pleasant chatter. I loved corresponding with him! I’m sure he’d want us to continue chatting and keeping his memory alive. I’ll email you back right now, I know I’ve been lacking on that. Thanks again for sharing…[Read more]

  • Profile picture of paula

    paula replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 2 years, 11 months ago

    @Marianne, I was switched from Esbriet to OFEV because I developed an allergy to it. I really have not had any issue with the sun while being on either one. I actually think that the Esbriet worked better but I could be wrong.

    My doctor just increased the dosage from 100 twice a day to 150 twice a day as my SOB is getting worse and I am now…[Read more]

  • Profile picture of paula

    paula replied to the topic Lung Transplant Considerations. in the forum Pre/Post Lung Transplant 2 years, 12 months ago

    I am only aware of what they (Mass General Hospital) has told me so far. They are very rigid which probably explains their higher than national success rate.

    Not sure what hospital your working with, but I am sure they will let you know what their rules are.

  • Profile picture of paula

    paula replied to the topic Lung Transplant Considerations. in the forum Pre/Post Lung Transplant 2 years, 12 months ago

    My cousin is in year 7 post transplant. Another friend is at 4 years and she has a friend who is at close to 20 years.

    The case manager is giving you the national average.  A lot of factors go into how long you live after the transplant.

    At a recent meeting with the transplant group they were talking about a guy who was 17 years post op before…[Read more]

  • Profile picture of paula

    paula replied to the topic Lung Transplant Considerations. in the forum Pre/Post Lung Transplant 2 years, 12 months ago

    Hi Robert I just had my cardio cath @ MGH today no stents needed. A cat scan reported that beside that the fibrosis in the right lung the also noted something in the left that is most in likely the fibrosis, but there is a small change its the early stages of lung cancer. Suggest another CT is done in 6 months.

    I will be meeting up with Dr, V…[Read more]

  • Profile picture of paula

    paula replied to the topic Lung Transplant Considerations. in the forum Pre/Post Lung Transplant 2 years, 12 months ago

    We were just at Briggs the other weekend. I love them so much that when I was in Plymouth, I would travel up to them to get my plants.

    Coffee would be great. I have no appointments in Boston in June so maybe we could hook up then and I can tell you what I have learn so far on this journey. I was diagnosed Feb 2016

  • Profile picture of Cynthia

    Cynthia and Profile picture of paulapaula are now friends 2 years, 12 months ago

    • Profile picture of Pamela Green
      Pamela Green replied 2 years, 11 months ago

      Cynthia, I did reply to your questions re oxygen suppliers in Rhode Island but for some reason I have not seen my reply.
      I live in North Kingstown and use Apria who are on the East Side I believe.
      They have been excellent both with the home concentrator and the Inogen portable unit. They cover the country which is important to me as we leave in…[Read more]

    • Profile picture of Pamela Green
      Pamela Green replied 2 years, 6 months ago

      Cynthia, Dd you get onto the transplant list at Mass General?
      I am pleased I moved to Temple who appear to have an excellent program and my ex-daughter in law has kindly offered me her home for us to stay an hour away from the hospital for as long as we need. I feel truly blessed.

      • Profile picture of Cynthia
        Cynthia replied 2 years, 6 months ago

        That’s great. I wish you the best, and that’s terrific that you’ll have a place to stay. I went to Women & Brigham for an initial lung transplant consult and left feeling pretty anxious about the whole thing. Soon after that my diagnosis changed to autoimmune and my pulmonologist thinks there’s a good chance we can get the fibrosis into remission.…[Read more]

  • Profile picture of paula

    paula replied to the topic Lung Transplant Considerations. in the forum Pre/Post Lung Transplant 2 years, 12 months ago

    Cynthia, Good Morning. Not sure if the Generals program is bigger than B & W’s but they are more rigid. Also not sure if there is an age limit. If you like I can ask the next time I am talking to them.

    What part of RI are you in? I live on the Cumberland line (North Attleboro).

  • Profile picture of paula

    paula replied to the topic Lung Transplant Considerations. in the forum Pre/Post Lung Transplant 2 years, 12 months ago

    As some know here I am currently going through the evaluation process to see if I can get on the list. I am going through  Mass General Hospital, Boston who has a really high success rate. Probably because their criteria is so rigid.

    My thoughts on the concept of a transplant? Scares the crap out of me. I am someone who need to be as much as I…[Read more]

  • Profile picture of paula

    paula replied to the topic Clearing Throat in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 12 months ago

    Not sure if I am dealing with the same issue (although I do have the nasal drip and nose bleeds), but when I am talking all the sudden my voice craps out on me. Sounds like I (for a better lack of description) a frog in my throat. Even trying to clear it, does not seem to do much until it decides to behave itself. Quite annoying if you ask me.

  • Profile picture of paula

    paula replied to the topic Dying from IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 2 months ago

    Hello.

    When I am going about I am on 3 liters but when I am on the bike at the gym I bump it up to 5 and that helps my levels to get no lower than 87.

    Congrats Gary on getting on the list. I am not on the list yet, Boston Mass General is considering me. They were waiting to hear from my health insurance before setting up my first…[Read more]

  • Profile picture of paula

    paula replied to the topic Dying from IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 2 months ago

    Hi Bill I absolutely LOVE your attitude.

    Boston has agreed to consider me. Scares me the prospect but I am going to do what I can.

    Time will tell. In the mean time I try to stay upbeat and keep busy. Yes I get winded very easily but it is what it is.

    Thank you for your attitude.

  • Load More
Profile Photo Stephen Case Profile Photo Sandra

Login

Register

Search forums

Generic selectors
Exact matches only
Search in title
Search in content
Search in posts
Search in pages

Who’s Online

Profile picture of Pat
Profile picture of Upali Samarakoon

Newest Topics

  • Using Social Media for Advocacy by Christie Patient
  • Generic Version of Esbriet Available in the US. by Charlene Marshall
  • Mental Health & Chronic Illness Advice by Charlene Marshall
  • When should you start antifibrotics? by Darcy
  • Need to start all over by Rebecca Schrantz-Lilly

Recent Replies

  • Breathing techniques to help reduce IPF-related stress
  • IPF patient symptoms
  • Need to start all over
  • IPF patient symptoms
  • IPF patient symptoms

Members

Newest | Active | Popular
  • Profile picture of Pat
    Pat
    Active 56 seconds ago
  • Profile picture of Upali Samarakoon
    Upali Samarakoon
    Active 12 minutes ago
  • Profile picture of Chris Montgomery
    Chris Montgomery
    Active 1 hour, 7 minutes ago
  • Profile picture of Kevin Schaefer
    Kevin Schaefer
    Active 1 hour, 18 minutes ago
  • Profile picture of Colin O Driscoll
    Colin O Driscoll
    Active 1 hour, 32 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 © 2017-2022 All rights reserved.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or     Create an account

Lost your password?

Forgot your details?

I remember my details

Create Account