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    • #34298

      As patients living with chronic and progressive diseases like idiopathic pulmonary fibrosis (IPF), it is inevitable that we will experience hospitalization at some point. Whether that be proactively ahead of a test or procedure, or reactively due to an exacerbation, illness, or disease progression; it is likely something you have or will experience. Since being hospitalized can cause patients a lot of anxiety, it is important for all hospital personnel to prioritize patient-centered care. This is something I’m grateful that my transplant center does well and is always striving to improve for the patients they care for.

      Back in November of last year, I wrote a column on the 3 key components of patient-centered care, which you can read HERE. Based on your own hospital experiences – whether they be inpatient or outpatient – I’m curious whether you’d add anything else to the key elements of patient-centered care practices.

      As a patient living with IPF: what does patient-centered care mean to you? 

    • #34315
      Tonya Worley
      Participant

        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.

        • #34322
          GratefulDeb
          Participant

            Oh God.  I could not have said it any better than Tonya Worley said.  All of it resonates with me.  Tonya, you took the words right out of my mouth.  Asking for something for pain has become something of shame.  I asked for something for my pain and was met with a big NO.  This disease IS painful.  Unless you have directly experienced it, you cannot fathom the pain of feeling like you are breaking ribs coughing, a back that hurts from coughing, muscles that are tight, a raging UTI from being flat on your back for weeks.  I asked for narcotic cough syrup so I could get some sleep.  NO.  I have an illness that is chronic and life-threatening and yet everyday I fight ….I continue to fight . ….and I continue to laugh.   I’ve even been told I am  “end stage” and yet there are no palliative care inquiries or concerns.  I am an educated patient and when I begin asking questions that are uncomfortable I become “flagged” as a “difficult patient”.  This is MY LIFE.  Don’t put a label on me.  Thanks for this post.  Chin up folks.  We got this. 🙂

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