This topic contains 6 replies, has 4 voices, and was last updated by  Charlene Marshall 1 year ago.

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  • #13783
     Charlene Marshall 
    Keymaster

    To be blunt: living with idiopathic pulmonary fibrosis (IPF) sucks. I am sure this could be said about living with any chronic illness, however, I can only speak to how difficult it is living with IPF since my diagnosis in early 2016. Since IPF is an invisible illness, it is so hard for others to truly understand the difficulties that can come from living with failing lungs. In addition to the difficulties, there is so much unpredictability that comes from living with IPF.

    Some days I wish there was a rulebook or reference guide that I could refer to and study while trying to navigate life with a chronic illness, but of course there isn’t. Since the lungs are one of the most vital organs in our bodies, arguably the most important, only second to the heart; having lungs that are failing has caused multiple issues for me. Having unstable and poor lung function is very aggravating, exhausting and …. unpredictable!

    I am never really sure what each day is going to bring for me, and when I wake up in the morning I just try to be hopeful that the day will be a good one. It might mean that I only have 1 coughing spasm instead of 5, or it might mean that I end up in the hospital for increased oxygen supports (ie high-flo) or it might mean that I go all day without even needing my supplemental oxygen. This is just one example of how unpredictable our days can be when living with IPF. Unfortunately, there are many more examples too. Here are a few:

    • My ability to cope with my disease: somedays I can cope well and forget I even have a life-threatening lung disease, whereas other days I dissolve into a puddle of tears on the floor thinking that none of this is fair. Unfortunately I cannot always control or predict how I cope with my illness, and I seek to find compassion, understanding and empathy from others on those days, instead of judgment.

     

    • As my lungs continue to decline, sometimes I am physically capable of completing daily tasks, and other times I’m not. Sometimes I am able to get groceries on my own, and other days I feel so exhausted and short of breath that I can’t get down the sitars on my own. Other times I can take my dog for a walk in the evening when the weather cools down, and sometimes I need to a wheelchair at the end of a long day because my legs and lungs are so tired. Since IPF is invisible, this is rarely something that others can understand or relate to, especially if they are healthy.

     

    Can you relate to my experience of all the things that are unpredictable from living with failing lungs?

    What are some of the things you can no longer predict since being diagnosed with IPF/PF?

     

     

  • #14019
     Chuck Harrison 
    Participant

    Ill keep this short as I’m not doing great at this moment .all I can say about your post Charlene , I can relate to almost all of that. Have the best day possible 😎

    Chuck

  • #14045
     Charlene Marshall 
    Keymaster

    Hi Chuck,

    Thank you so much for taking the time to reply, although I am so sorry you aren’t doing well today! Have you come down with something, or it is heat & humidity-related? Thinking of you and hope you start to improve soon. It’s nice to hear others can relate to my writings, so thank you very much for getting in touch.

    Kind regards,
    Charlene.

  • #14055
     Robert Williams 
    Participant

    Started treatment in 2014 what bothers me is the decline when I look back year over year. On the two meds and added metformin this summer. Have been on O2 @2L for four years.

  • #14073
     Charlene Marshall 
    Keymaster

    Hi Robert,

    Thanks for getting in touch with us regarding this topic, and welcome again to the PF forums!

    Sounds like your disease isn’t progressing rapidly, which is good if you use 2L 02 and started treatment in 2014. I’ll keep my fingers crossed that it remains this way for you, although I certainly know any progression or even a diagnosis of this disease is unfair. I also am bothered when I think back of everything that IPF has “robbed” me of, especially from the person I used to be to who I am today. It’s hard to accept such a difference, and know even more that the difference is due to a lung disease that I did nothing to deserve, nor can I control.
    Glad you are on the right treatment for IPF – are you using both OFEV and Esbriet did you say? I’ve never heard of that option before. Have you noticed a difference since introducing the Metformin as well?

    Thanks again for connecting and hope you continue to do well Robert.
    Take care,
    Charlene.

  • #14088
     Marina Arpatzi 
    Participant

    Got diagnosed in 2000, being 29 years old. Still alive, but at an unbelievable cost. I’m Greek, the only medicine administered is cortizone and azathioprine. Nothing else. Esbriet and Ofev came too late as choices. Not for such severe conditions, doctors said. 3l o2 24/7 since 2015… spine fractured due to osteoporosis. Both feet, too. Both eyes operated… bad teeth, swollen body and face… I do not give up, though. I have a son, he turned 15 last week. He is the only reason I keep fighting. I feel so disappointed, as you said, ipf has robbed me of my youth, my everything… Even transplantations have stopped being performed in my country. Medical insurance does not cover this operation abroad…

    • #14104
       Charlene Marshall 
      Keymaster

      Hi Marina,

      Thanks again for joining the PF forums, although I am so sorry to hear of your diagnosis at 29 years young! I know how excruciatingly painful and unfair that is, as I was also diagnosed in my late 20s and continue to deal with this disease every day. I’m really sorry to hear of the lack of medication options in Greece, have you spoken to your doctor(s) about the two anti-fibrotic medications approved to slow down the progression of IPF (OFEV and Esbriet)? It may not be readily available for you in Greece, but if it would help, surely your doctors could figure out how to obtain it. That would be my hope for you anyways!

      Dealing with osteoporosis must also be exhausting in addition to IPF, and I can’t imagine lugging oxygen around while dealing with this condition. So sorry this is your experience…. corticosteroids while effective for our treatments, can leave horrible effects on our bodies. I hope you continue to fight for your son for a long time, even though I know how tiring this disease it. It sounds like you’re both lucky to have one another 🙂

      If you could get a transplant done somewhere else, is this an option for you? I know there is all the logistics to figure out, including expenses, but would you be a candidate for transplantation do you know? I’d ask your doctor to see and then if at all possible explore some options outside of Greece. That is of course if you want to undertake such a big procedure, each person has their own thoughts on this understandably.

      Take care and write anytime Marina.
      Warmest regards,
      Charlene.

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