• 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.

  • 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]

  • @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]

  • @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]

  • paula posted a new activity comment 4 months, 4 weeks 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]

    • 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]

  • 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.

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

  • 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]

  • paula posted an update 4 months, 4 weeks 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

    • 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.

      • 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]

        • 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]

  • paula replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 5 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]

  • 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.

  • 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]

  • 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]

  • 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

  • Cynthia and Profile picture of paulapaula are now friends 5 months, 3 weeks 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]

  • 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).

  • 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]

  • 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.

  • 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]

  • 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.

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