• @Wendydirks, My husbands cough also gets worse when he lays down.  That is the only time use uses oxygen.  He’s wondering if there is some relation.  He does cough during the day but at night it’s more from his throat than lungs.  He stopped by the O2 place today and they are coming to check the air filter on the machine.  Typically they chan…[Read more]

  • Kathy Phillips posted an update in the group Group logo of Research and DevelopmentResearch and Development 1 month ago

    Jim Dawson I’m anxious to read more about Mycophenolate Mofetil. My husband is unable to take Esberit because of the nausea and other side effects. Our doctor is at Duke so I will have him write her about his medication. Toby is doing pretty well with managing his cough with oils he rubs on his lungs and throat. He’s been a little more…[Read more]

  • I’m so sorry you had this awful experience.  I personally will wear a mask in crowded places because I don’t want to get something and bring it home to Toby – he’s the one with IPF.  I even “nicely” comment to adults who cough and sneeze without covering their mouth or using their elbow.  I asked one 40 ish year old woman if she would please co…[Read more]

  • What helps my husband is Thieves Cough drops.  I break them up and put pieces in a jar for him.  No other cough drops works like these.  I also have a blend for our diffuser with Eucalyptus Globuhis, Wintergreen and peppermint.  He carries a bottle of RC oil with him every where.  He rubs that on his chest / throat area when he gets a coug…[Read more]

  • Yep Toby has hiatal hernia !  Good call.  He eats a main meal during the day and snacks for dinner

     

  • Kathy Phillips posted a new activity comment 2 months, 2 weeks ago

    Hi Russ, my husband has IPF so I joined this site. Have you also checked out the forum “PatientsLikeMe.com” ? We have been members there since his diagnosis in 2017. We are Emma Lou there. How is your wife and how long has she had IPF? Kathy & Toby

  • Susan can you share your neighbor?   Are you using toxin free cleaning products?  That is the first thing we tossed out of the house after getting his diagnosis.  NO cleaners with fragrance / chlorine !   Even our detergent is 100% natural so we aren’t sleeping on toxic sheets and wearing the clothes that formerly smelled great…[Read more]

  • Kathy Phillips posted a new activity comment 2 months, 3 weeks ago

    Hey Mark, I signed up using my FB page. Should I register or just keep connecting with FB?
    Thanks,
    Kathy & Toby

    • Hello, you are registered. If you been using Facebook to connect I guess that would be alright but you are registered and approved. I approved your registration yesterday. Mark

  • Kathy Phillips posted a new activity comment 2 months, 3 weeks ago

    Thanks for sending me a friend request. I just accepted and I’m happy to talk with you with what my husband has been doing. He was diagnosed with IPF in 2017. He is also a member of PatientsLikeMe.com https://www.patientslikeme.com/

    This site is really good. We are listed as “emma lou” there.

  • My husband Toby was diagnosed with IPF in 2017.  His pulmonary doctor is at Duke (5th in the nation for lungs).  He is unable to the prescriptions currently available.  He stayed so sick when taking the meds he gave that up.  He has been a member of another great forum in PatientsLikeMe.com which we highly recommend.

    We are proactive about his…[Read more]

  • Kathy Phillips posted a new activity comment 2 months, 3 weeks ago

    Hi Mark, My husband Toby is the one who sent me this site. He was diagnosed with IPF in 2017. He also belongs to PatientsLikeMe.com where he’s been since diagnosis. He was reading the thread I think you actually started about things to help with immune support. The Elderberry was one and I made this for him about 3 months ago. I got the…[Read more]

    • Hello Kathy and Toby, it sounds like you two have incorporated an awesome regimen into your lives. Kathy feel free to post a forum topic on all of your suggestions. I think they sound great and would benefit pf forum members. You sound like a wonderful caregiver. The positive attitude you both are showing are great examples for the pf community.…[Read more]

      • Hey Mark, I signed up using my FB page. Should I register or just keep connecting with FB?
        Thanks,
        Kathy & Toby

        • Hello, you are registered. If you been using Facebook to connect I guess that would be alright but you are registered and approved. I approved your registration yesterday. Mark

  • Kathy Phillips became a registered member 2 months, 3 weeks ago

    • Hello Kathy, thank you for joining your pulmonary fibrosis forum. Welcome!

      • Hi Mark, My husband Toby is the one who sent me this site. He was diagnosed with IPF in 2017. He also belongs to PatientsLikeMe.com where he’s been since diagnosis. He was reading the thread I think you actually started about things to help with immune support. The Elderberry was one and I made this for him about 3 months ago. I got the…[Read more]

        • Hello Kathy and Toby, it sounds like you two have incorporated an awesome regimen into your lives. Kathy feel free to post a forum topic on all of your suggestions. I think they sound great and would benefit pf forum members. You sound like a wonderful caregiver. The positive attitude you both are showing are great examples for the pf community.…[Read more]

          • Hey Mark, I signed up using my FB page. Should I register or just keep connecting with FB?
            Thanks,
            Kathy & Toby

            • Hello, you are registered. If you been using Facebook to connect I guess that would be alright but you are registered and approved. I approved your registration yesterday. Mark

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