This topic contains 7 replies, has 5 voices, and was last updated by  Mark Koziol 1 week ago.

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  • #18523
     Charlene Marshall 
    Keymaster

    As many of you know the Pulmonary Fibrosis News forums is owned and operated under the purview of BioNews Services. Using a patient-focused model, BioNews Services hosts multiple rare disease sites. In addition to the PF news site, there are many other disease sites including Cystic Fibrosis News Today, SMA News Today, Pulmonary Hypertension News and MS News Today, just to name a few. It has been such a gift getting to know the patient moderators, columnists and editors from each of these rare disease communities. I now not only consider them colleagues, but friends as well and I learn so much from them every day!

    Recently, CF News Today posted a topic that encouraged members to answer one specific question about their disease and despite not having CF, I was interested in reading their answers, because I could relate even as a patient with idiopathic pulmonary fibrosis (IPF). Here is that question:

    What is the hardest part about living with a lung disease?

    If you feel inclined, please share your answer to this question. While our disease differs greatly from CF, there are some commonalities associated with living with any type of interstitial lung disease (ILD). This was really highlighted for me when I went to see the new movie Five Feet Apart in theaters last month. I shared those commonalities, and how I could relate to that movie, which is about CF, as a young person living with an ILD in a recent column which can be found here.

    I know what some of the hardest parts of having a lung disease are for me, but everyone’s experience is unique and differ depending on the life stage their at, along with the severity of their disease. As a result, I’m curious to hear from you regarding the question above. Perhaps our answers can be compiled somewhere, into a collective document, and shared with those who are newly diagnosed with IPF? Just something to ponder…

  • #18557
     David Thoreson 
    Participant

    Mobility

  • #18559
     Charlene Marshall 
    Keymaster

    Hi David,

    Thanks for replying to this topic thread, I am truly interested in hearing others’ response to this question. Losing our mobility and ability to be physically active is absolutely gut-wrenching. I’d have to say this is one of the hardest things for me too, the physical changes. Thanks for sharing and I hope you’re doing as well as possible. Sending best wishes to you!
    Charlene.

  • #18560
     Wendy Dirks 
    Participant

    Most of the time I accept where I am in this process of dealing with my disease. Sometimes I get down thinking that what I’m dealing with is the process of my dying, which is true, but it’s also the process of living, because dying is the normal and natural end to that process. Mostly I am cheerful and happy. I don’t go out much anymore, as walking is so difficult. For years before my diagnosis finally made it clear why I was breathless, I was so embarrassed at my inability to walk up a hill. I thought everyone was judging me – “Oh, look at that fat old lady, can barely walk.” I didn’t understand why I couldn’t do the things I could once do with ease. And now, I can stop blaming myself. I accept that I can’t do things I could once do. But every now and then, it’s really difficult. My husband and I went for a walk the other day and, as usual, I had to stop every 2-3 seconds to catch my breath. I remembered the spring that I decided to start jogging, 10 years ago. I remembered how proud I was when I could run the whole distance around my neighbourhood. I felt awful that I can barely walk around it now. But the sun was shining, the birds everywhere feeding the new spring babies, and eventually I felt okay again. Life continues.

    • #18564
       Katie Bagshawe 
      Participant

      Hello Wendy, sending my love and thoughts to you. Losing mobility and independent is such a heart breaking and frustrating symptom of dealing with lung disease. Like Mark said, are you using supplemental oxygen at all? That can help immensely at providing oxygen and support to remaining active. Have you also had the opportunity to attend Pulmonary Rehabilitation classes or meet with Physiotherapists? They can help with gentle exercises that will  gradually improve your stamina and learn how to cope with the breathlessness whilst exercising. It was instrumental in helping my Dad get back on his feet after his first devastating blow of pneumonia. He too was active and enjoyed walking the dog with me, it was heart-breaking for him that it was such a struggle to do this so we adapted in finding new routes and walks that he would be able to manage so he could join. Truth be told, walking the dog can still fill me with tremendous grief as it was an important time for me and Dad to chat and spend time together.

      • #18574
         Mark Koziol 
        Keymaster

        Thank you Kate for offering your support!

  • #18561
     Mark Koziol 
    Keymaster

    Hello Wendy, you have such a positive attitude. I read your profile and I noticed you are not on supplemental oxygen. The o2 may be able to help with your walks around the neighborhood. When I was on o2 it helped me immensely but I was also at the point where the oxygen was instrumental with any activity. Supplemental oxygen has improved the quality of life for many people. I am sorry you have to suffer through this disease. Please keep us updated on your condition. I feel you are an integral part of this community forum and have a lot offer just by your positive attitude. Thank you mark

  • #18565
     Katie Bagshawe 
    Participant

    It would be hard for me to sum this up as I feel we could all write quite a list of the things that are the biggest struggles, and our opinions can probably change day by day. For me though, I think it sums up into the fact that there is such a lack of awareness which means the research and funding opportunities are far fewer, diagnoses takes a lot longer (which is vital time to slow the onset), the lack of knowledge around it being a terminal and progressive disease that should be accepted the same as other terminal diseases such as cancer, medications being unavailable to many due to funding or financial reasons, and a lack of drive for when people are diagnosed to get the correct support. Over in the UK we have the NICE clinical guidelines which advise what should happen to a patient or dealing with illness and disease. When diagnosed with an ILD the person is supposed to be offered pulmonary rehab, they should be assessed for transplant and continuously monitored, medications can be prescribed within certain parameters etc. Unfortunately, it is common knowledge that this happens to so few patients as the systems in place can’t support the masses of those being diagnosed, or Doctor’s are unaware of how to effectively treat and help someone. It’s saddening but also frightening that in all these years nothing much has changed and a lot of promises are falling through quite quickly. To me if there was more awareness in the UK of just how many people it directly affects, it would drive more people to back funding and research as well as to hold people accountable for providing the correct treatment. This isn’t just for PF but all lung diseases with the exception of lung cancer and COPD.

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