• Hi Charlene.  I know it’s been awhile since I wrote to you.  I’m doing pretty good.  I called cvs again and told them the doctor said to leave the prescription as is.  So I got my Ofev in a few days.  Once a day is better, but not great.  My stomach is still crazy.  I’m using Imodium multi symptom.  It’s good.  I take 2 pills before going out…[Read more]

  • Hi Charlene.  So I went to the doctor on Friday and he reduced my pills to one a day.  I also started taking the new Imodium pills that can be taken 1 hour before a meal.  I use them only if we go to a restaurant or a party. What a big difference.  I feel so much better.  The only problem is when I called cvs to renew my prescription, I ment…[Read more]

  • Hi Charlene.  Well I’ve been on Ofev for about 3 weeks.  First week was fine.  Since week 2, not so much.  I’m going to the doctor on Friday.  I’m going to see if I could take Ofev once a day instead of twice.  Hopefully he says yes.  I’m so miserable.  I’m taking Imodium almost every day.                                     How are you feeling?…[Read more]

  • Hi Charlene.  Well I’m on Ofev for 1 week.  So far so good.  I’ve been reading all of the emails sent to the pulmonary fibrosis news.  Very interesting and many helpful hints.  I’m amazed to see how many people have this.  I never heard of it til my diagnosis.  Also when people hear what I have, I have to explain it to them what it is.  Hope yo…[Read more]

  • Hi Katie.  So nice to hear from you.  The flu was tough.  But I had my flu shot so it wasn’t terrible.  My husband had it at the same time I did and he was so much sicker than me.  My doctor just put me on Ofev.  Hopefully the progress of my pulmonary fibrosis will slow down.  Who knows??  Keep in touch.  Eleanore

  • Hi Charlene.  Thanks so much for your quick response about Ofev.  I should get it in the mail today.  I’m looking forward to starting.  I tolerate meds pretty well but I will definitely follow all directions.  I’ve been reading as much as I can. I also read a lot on the forum.    I hope it helps me with my breathing.  My cough has improved qu…[Read more]

  • Hi Charlene.  I’m finally getting Ofev.  I know you are taking Ofev and I just want to know how you are on it.  How do you feel?  I’m anxious to get started.  The person  at the breathers club in valley hospital who runs the meeting told me about stomach upset.  I can deal with that I think!!!!!  I’m the only one at that meeting who has pulmonary…[Read more]

  • Hi Charlene.  I didn’t realize how challenging a shower could be.  Now I’m in and out.  I suds up and rinse off.  I try to breathe normally.  I thought it was just me.  This IPF stinks.  I took a Zumba class for seniors today, and it’s funny how my friends keep an eye on me.  I was never weak like this.  I’ve always been so healthy.  I digr…[Read more]

  • Eleanore DAngelo posted a new activity comment 5 months, 3 weeks ago

    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

  • Hi Charlene.  Always nice to hear from you. Hopefully you’re not sick.  Do you run to the doctor immediately?  I’ve learned my lesson. Sick is really sick now.  Plus I’m afraid of getting pneumonia.  I had the shot, but who knows.                                                                   The gym.  I belong to Golds. It’s very good.   I’m 7…[Read more]

  • Good morning Charlene.  Just want to say Hi.  Still coughing from the flu (maybe) or from the IPF (probably).  I’ve been getting out quite a bit.  Going to the gym today.  Third time this week.  After my diagnosis, I was ready to quit, but then my doctor told me I had to go back.  It does make me feel better.  It’s nice to see my friends too…[Read more]

  • Eleanore DAngelo posted a new activity comment 5 months, 3 weeks ago

    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

  • Eleanore DAngelo posted a new activity comment 5 months, 4 weeks ago

    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

  • Eleanore DAngelo posted a new activity comment 5 months, 4 weeks ago

    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]

  • Eleanore DAngelo posted a new activity comment 6 months ago

    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]

  • Eleanore DAngelo posted a new activity comment 6 months ago

    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

  • Eleanore DAngelo posted a new activity comment 6 months ago

    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.

      Charlene.

      • 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.

    • 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.

        Charlene.

        • 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!
      Laura

      • 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

  • Hi Charlene.  Well the flu is done and we’re feeling much better.  Going to yoga today.  I’ve read you email a few times.  Our experience was similar when we had our diagnosis.  I had been coughing for almost a year, so everyone I know wanted to know my diagnosis.  That was this past October.  It was just so hard letting people know how sick I am.…[Read more]

  • Hi Charlene.  So nice to hear from you.  When I was first diagnosed I was so scared and depressed.  I never even heard of this disease.  Then to read that you are working made me feel so much better.  I’m 71 and the only thing I’ve ever had is dry eye.  So this made me so upset.  I also have asthma.  I don’t have a lot of scar tissue, but i…[Read more]

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