Tonya Worley
Forum Replies Created
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Excellent subject and one that really is in need of effecting. I feel that IPF/PF unfortunately is totally left at the mercy of our healthcare professionals since there is no staging or progression markers, we have exacerbations so many times we are unable to be remedied wherein comfort and pain mgmt. are not addressed effectively. So many people say lung diseases are not painful but pleurisy is and rheumatological diseases can be painful for the PF patients. Also, for the PF patients we have to deal with both rheumatology and pulmonology doctors and they do not always know what the other is doing, creating anxiety in the patient as to who to listen to. Other terminal illnesses can by monitored and staged wherein the patient knows what to expect in each stage. We don’t have any system or pattern to follow, each patient has their own set of medical conditions that affect their pulmonary disease. The anxiety of not knowing what to expect is disheartening. The idea that we often times do not get enrolled in hospice care that could have managed the pain and anxiety better than medical professionals are willing or better yet are not willing to do because of fear of addiction etc…. I feel when faced with a terminal illness fear of addiction is the least of my worries and should be their least worry too. I feel an additional component in patient centered care should be No discrimination in patients regarding past, present or future addiction issues. Everyone has different pain tolerances and any ill regard a doctor may have regarding narcotic pain relief and anxiety control should be free from any discriminations.
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I am late as usual lol… I am still trying to figure the forum out as far as the notifications so I will not miss the new posts it seems I still am late or I just accidently run up on a post such as this one.
So many illnesses affect us emotionally and it can throw any dormant mental health issue into fast forward if they had mental health issues prior to the chronic illness diagnosis and/or chronic illness in itself with someone that has never had mental illness issues can precipitate a newfound mental health diagnosis/issue. The words chronic and/or terminal at best most assuredly can create grief, frustration and stress leaving the perfect platform for a mental health breakdown and/or breakthrough even, therefore, any person dealing with such Chronic and/or Terminal illness needs to “check themselves” to make sure there aren’t any mental health issues unchecked iyswim.
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I responded to this, but I decided to make my response a topic instead regarding “Normal Progression” in a topic I will call “Is Normal Progression a convenient answer or a Copt-out for the IPF/PF Patient?” so maybe it will bring on converation about this overused response we get from our doctors.
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Wow, I ask myself the same question so I don’t have any answer but I too have gone from a dry cough to a thick plug of mucus that takes me a minute or so of coughing in efforts to get it up. I begin to panic when I can’t get it up but so far within at most 2 minutes, I can get it up or situated wherein it doesn’t bother me. It’s not so much infection looking its cloudy pale translucent color but it’s so thick that it doesn’t feel wet really. It feels like a blob of that slim stuff children play with. sometimes is a string of it vs. the blob and I have to pull it out and I can feel it down in my trachea. Normally I find myself uncomfortable describing this to anyone, even medical professionals but I am curious what it means if anything with PF progression and I think you are wanting answers too? Maybe someone will respond that can shed some light on this.
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I had to get my throat stretched.
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Amy, could you as a nurse explain what your mom’s experience with IPF has been like for us that really have no idea what to expect and fortunately I haven’t experienced too much bad at least I have been able to deal with it so far i.e. the changes in my health since diagnosis.