• Hi! The cold damp air definitely makes my symptoms worse. I’ve been feeling awful for about 3 weeks, low grade temp, incessant cough, and chest pain. I went to the doctor last week and had a chest x-ray. As I suspected it is pneumonia. He prescribed Levaquin but I  haven’t had any improvement yet so I suspect it may be viral. I am not looking…[Read more]

  • I was diagnosed with Advanced Pulmonary Fibrosis in October of 2018. I was hospitalized for pneumonia and the chest CT scan showed the fibrosis. My pulmonologist and rheumatologist both feel that the fibrosis was caused by my Sarcoidosis and Rheumatoid arthritis. I had been on Plaquenil and Prednisone but it continued to progress. The next thing…[Read more]

  • Good morning! I’m flying from Cleveland to Dallas today and although I have never been a nervous flyer, I’m feeling a little anxious this time. I have my mask, pulse oximeter, mucinex and flonase packed in my personal carry on so I should be all set. I’ve been up all night so hopefully I’ll sleep most of the flight! Wish me…[Read more]

  • Hi Charlene!  I don’t know if this is just a coincidence or some divine intervention but when I saw this topic my jaw dropped.  The last two days I have been dizzy, wobbly and even fell forward today when I tried to stand up. I wasn’t sure if it was because of the severe sinus headache I have or due to the fibrosis or dehydration or ??? Perhaps i…[Read more]

  • Good morning everyone! After reading all of your comments I can definitely relate to so much of what each of you have said. I am having trouble getting used to being so fatigued, and I think accepting that it is a new way of life is depressing. After one holiday family dinner that my daughter and her husband had prepared and hosted someone yawned…[Read more]

  • Laura Bush changed their profile picture 10 months, 1 week ago

  • Good morning!  I have found that my resting heart rate is usually around 94 now, it used to be about 70. I think our hearts have to work harder for us to breathe. My doctor told me that is also what causes the weight loss. I’ve lost 20 lbs in the past year and a half, and I was thin to begin with.

  • Good morning!  I’m so glad to see this topic. I have been too embarrassed to admit that I have such a strong fear of taking a shower. My main fear is that I will get light headed and/or lose my balance and fall. I live alone, so if I were to hit my head and lose consciousness, nobody would know  that I needed help. I’m not on oxygen yet,  but ha…[Read more]

  • Good morning!  I was so excited when I saw Natural relief for mucus in the lungs as a topic. Unfortunately I am allergic to fresh pineapple and I don’t think I should try drinking pineapple juice! I hope there are other options! Any other ideas? Thanks, Laura

  • Hi Charlene and others! With regards to the CBD oil that I started using,  it is called Wild Rogue CBD Tincture, 1000 mg CBD hemp oil. It is a small 30ml bottle. On the bottle it says a “serving” is 0.5ml., so I decided to take half of that amount in the morning and half before I go to bed. I am trying to get more information about it,  as it d…[Read more]

  • Hi, I started using hemp CBD oil this week. I have started with a few drops under my tongue in the morning and at night. It definitely seems to be helping me sleep. I haven’t seen any improvement yet in my joint inflammation and pain,  but from what I’ve read it can take a couple weeks before there is any noticeable difference. Being able to…[Read more]

    • Hi Laura. I’m so glad you reached out to me. I’m also new to this terrible disease. I don’t have severe scarring, but just enough to make me miserable. I also have asthma. I just joined the breathers club in my hospital. My husband has been wonderful in caring for me, but it feels good to be with people in the same boat. The worst thing…[Read more]

      • Hello @gmabankeraol-com (Eleanore),

        Sorry for intercepting your message to @lowe (Laura), I just wanted to make sure she sees it so I am tagging her in it 🙂 I hope you’ve had a nice day.


        • Hi Charlene. The more the merrier. You know misery loves company. All kidding aside, I saw my daughter today and she was the one who turned me onto this news letter. She was so glad to hear that you reached out to me. She knows the importance of having someone to talk to with the same disease. Keep in touch. Take care, Eleanore

      • Thanks to both of you! It feels good to be able to have conversations about PF with others who can relate.

    • Thanks for getting back to me. It is good to have conversations with people who share the same disease. It’s a tough one. Learning to live with this has been life changing. Thank God my family and friends have been very supportive. Especially my husband. He’s a nervous wreck, especially at first. But things have calmed and we still do a lot…[Read more]

      • Hi @gmabankeraol-com,

        Thank you for getting in touch – it is lovely to hear from you, as always. I completely agree about the importance of being able to connect with others who are living with IPF. I’m really happy to hear your friends and family have been supportive, including your husband. It can be a lot to learn for those caring for us,…[Read more]

    • Good morning! Do you have trouble sleeping? Between my RA joint pain and my coughing I rarely sleep more than an hour at a time, so I never really feel that I’ve had a good night’s sleep. I don’t like feeling exhausted all the time, and being behind on household chores. I won’t even let anyone in my apartment because I’m embarrassed by how much…[Read more]

      • Hi Laura. Sounds like you are really having a rough time. As far as housework, I finally threw in the towel and got a cleaning lady. Such a big help. I have a pretty big house, not huge, but 10 small rooms. I would clean one room and sit down exhausted. One time I gave my bathroom a good cleaning and slept for about 2 hours afterwards. It…[Read more]

    • Good morning! Thank you for sharing your thoughts! It helps to know that there are people out there who understand the challenges that come with this disease. I’m super tired today so I’m going to try to take a nap . Hopefully I’ll feel more energetic when I get up. I’ll let you know!

      • Good morning Laura. Hope you’re having a better day. I feel a little crummy today. I hate that I never know how I’m going to feel when I wake up. Usually it’s crummy. The winter is killing me. I guess our feeling wonderful days are over. Having the flu two weeks ago hasn’t helped. My cough is so annoying. My son can’t believe that I’m not i…[Read more]

        • Hi Eleanore! We seem to have a lot in common. I was just diagnosed in October of 2018 too! Learning to accept the diagnosis has been hard for me too. My pulmonologist is hoping that my rheumatoid arthritis and sarcoidosis are the underlying causes of my Pulmonary Fibrosis. I’m being treated with Cellcept, Breo, and Ventolin inhalers, as well as…[Read more]

          • Good morning Laura. Just woke up a little while ago. Feel pretty good today. One never knows.!! You’re on so many medications. My doctor is still waiting for some reason. He showed me my cat scan. I have one little spot probably the size of a quarter, but it’s just enough to make me miserable. He wants to have a surgeon biopsy it, but tha…[Read more]

            • Hi Laura. How are you feeling? Hope you’re ok. Probably like me. Some good days and some bad days. I’m thinking about you. Take care. Eleanore

  • I just received a small bottle with a dropped of Wild Reyne purified hemp CBS oil from one of my very concerned and thoughtful daughters. I’m not sure how many drops I should start with, or what benefits to hope for. I have read that it helps for pain and anxiety, and inflammation so she is hoping it will help with my Rheumatoid arthritis…[Read more]

  • Good morning! I’m trying to be upbeat when I am not really okay. I had the opportunity to spend a couple hours with my grandsons yesterday and had a wonderful time.  They are ages 2 and 4, and of course full of energy! We had fun dancing and playing hide and seek,  so of course today I feel like I’ve been hit by a truck. As far as self care is c…[Read more]

  • Hi, I’m new to all of this, and was only recently diagnosed with Advanced Pulmonary Fibrosis in October of 2018, while hospitalized for pneumonia. I also have a primary immune deficiency,  rheumatoid arthritis, and sarcoidosis, as well as several gastrointestinal issues. The self-care topic is a much needed one for me. I welcome suggestions and…[Read more]

  • Laura Bush became a registered member 1 year ago

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