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    • #25570
      Mark Koziol
      Keymaster

      Hello forum members, Happy Pulmonary Fibrosis Awareness Month! Please keep telling all who will listen about the devastating disease you or a loved one is dealing with. The world needs to know, and our scientists need grants and funds for research. Opportunities for this are increased by our voice(s) and pressure from organizations such as the Pulmonary Fibrosis Foundation and research hospitals

       

      I read an article titled, “Demystifying pulmonary fibrosis” written by Gisli Jenkins, Ph.D.   The article appeared in the American Journal of Physiology Lung Cellular Molecular Physiology. I found the article  informative and interesting. He compares pulmonary fibrosis and COVID-19. I have read comparisons in other readings, however, this editorial piece is concise and readable for the untrained eye. There are however some medical terminology and acronyms that you may need to use the online dictionary. In his conclusion, he offers his thoughts on “re-purposing drugs to improve outcomes in both conditions”.

       

      How will you make others aware of pulmonary fibrosis?

       

      Does the article help you understand the comparison of pulmonary fibrosis and COVID-19? If so, what specifically in the article helped you?

    • #25610
      Heather
      Participant

      This is timely as my husband – diagnosed in March 2020 – and I haven’t told anyone yet about his diagnosis. We need to though. For one thing, he was diagnosed with a genetic condition called short telomere syndrome which is likely the root cause of his PF (though the docs still call it IPF). We need to tell his sister (who has children) about the genetic condition so she can decide whether or not to get tested for it. As part of that conversation, he would like to tell her about the pulmonary fibrosis. Also, his cough is increasingly difficult to ignore or pass off as allergies.

      I would welcome any insights in how to share his diagnosis with friends and family. Thank you.

    • #25611
      Mark Koziol
      Keymaster

      Hello Heather, I’m sorry to hear about your husbands diagnosis. I have short telomeres syndrome as well but there was no gene mutation which means it is not familial. I think they have to do another test to verify that. My brother contracted ipf last year but is not familial. In telling others about the disease, I am a straight forward person. I think having information on hard copy from a respected organization such as a research hospital or Pulmonary Fibrosis Foundation will help you in your explaining the disease to others as it will be a lot to take in and having the hard copy information will help them process. Tell them what stage of the disease is he in and what treatments are available for him, ie, oxygen and anti- fibrotic medicines and other things he can do such as as exercise. Bring the subject of a transplant up and have documents to support your talk. I wouldn’t sugar coat anything because what he’s about to go through will not be easy. I hope this helps, there is a lot information to process. Take care and keep in touch, Mark.

    • #25679
      Penny Spano
      Participant

      I am new to IPF. I got it after getting Covid. I also got a lot of other stuff my heart is now acting out. I’m losing my brain. I’m in a lot of pain and high anxiety. I just started ofev 100 mg twice a day. I’ve already be taken off one of the pills a day because I got a metallic poisoning taste and can’t keep anything down. What I kept down I can’t get out I haven’t been able to use the bathroom since I started the pill. I’m also experiencing vision problems. Did anyone go through all this? Or is it more Covid side effects. I’m very confused because I just had my yearly physical and I had no problems at all right before I caught Covid. Now I find out this disease is going to kill me quick if we can’t slow it down. It’s in like a maximum overdrive at the moment. What do you eat and drink? Everything I try isn’t working and if I can’t start keeping water down I’m headed back to the hospital. All the doctors I had except the pulmonary doctor quit on me. I’m having a heck of a time getting doctors to work together how are you doing it. I’m sorry so many questions I just can’t find any help. I got the ofev but I can’t find anyone to take my case to give me other medication I need. Any information would be greatly appreciated.

    • #25688
      Mark Koziol
      Keymaster

      Hello Penny, I am sorry to read all that is going on with you. I wish I had magic pill to give you. I’m sure you know that most patients who take Ofev, potentially have problems of going to the bathroom too much. It appears the opposite rings true for you. I wouldn’t even know where to start with sharing an experience with that. Hopefully, other forum members may be able to help you. Since your pulmonologist is still your doctor I would direct all your questions to him and the Ofev customer service department. They are very helpful and may be able to guide you through your gastro ordeal. Please ask your pulmonologist to refer you to a general practitioner. Take care and feel better, Mark.

    • #25692
      Nikchron
      Participant

      I recommend a referral to Palliative care, they consist of a Nurse, Doctor, Social Worker and etc… They act together as a group to help you navigate your sickness. They also coordinate with your doctors to help you decide what the best options and methods to take. I also recommend you seek help from a psychiatrist, they can help you with your emotions, thoughts and mental health during these stressful times. Its natural to be freaked out, depression, anxiety, going crazy or being afraid. I have experienced all these but have been able to cope with their help. Please use these resources, I wish everyone on this forum could read this and utilize these resources. I wish you all the best, it takes fear to be brave and courage to live our life with dignity.

    • #25693
      Mark Koziol
      Keymaster

      Hello Nikchron, thank you for your important message. Palliative care is wonderful for pf/ipf patients. Medical caregivers can function as one entity and focus on one goal: providing proper care for the pf/ipf patient. Take care, Mark.

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