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IPF patient wonders if current symptoms are IPF related or not
This is my first post. I discovered the Pulmonary News website a few weeks ago while awake during the middle of the night. That led me to the thread on dying from PF where I read postings for over two hours before finally falling sleep.
I am a 75-year-old male who was diagnosed with IPF in late October 2014. The diagnosis was confirmed by a lung biopsy. I am thankful I have made it 4.5 years from diagnosis with not much progression of the disease. I feel a bit of guilt submitting this entry because so many others have progressed to disabling situations. My heart goes out to all of you and your caregivers.
The only intervention I use is an albuterol inhaler as needed. My breathing is both labored and shallow. I had once led a busy life including much physical activity and exercise. My current physical activity is limited to 4 to 8 block daily “business trips” with our golden retriever. I have a terrific pulmonologist who I see every six months. Immediately prior to those appointments I do the PF tests and the results are ready for my pulmonologist to share with me when we meet. My pulmonologist is bright, empathetic, and willing to spend as much time with me as necessary to respond to my questions and concerns. He trusts the test results, but he also puts a good deal of credibility into how I report I am feeling and my symptoms. About two years ago he suggested I try esbriet. Unfortunately I could not handle the side effects of diarrhea and loss of appetite. I tried reducing the dosage at my doc’s request, but it did not reduce the side effects. I told my doc that quality of life is more important to me than longevity and I stopped taking esbriet.
I last saw my doc in February when my PF test scores began slightly trending toward IPF progression. The doc’s response was to wait until the next 6 month testing cycle to determine if it is progressing. That was fine with me despite my concern that my chest/lungs were tender likely due to ongoing post-nasal drainage. He suggested I use my neti pot consistently for a month to see if I get chest/lung relief.
It has been just over two months since that appointment and my condition has deteriorated. Current symptoms: (1) ongoing and frequent coughing, both productive and dry. Productive coughing results in yellow to yellow-green phlegm. I have coughed up so much gunk in the last month that one would think there could be nothing more left to expel. Dry coughs are painful episodes resulting in a sore chest. (2) sore throat must mean I still am experiencing drainage, but I do not sense I have a cold or sinus infection. My throat is raw and often tickles. (3) ongoing wheezing (that can be heard from a distance) on exhale only. (4) extreme fatigue to the point one simple errand is more than I can handle without coming home for a nap. (5) I have a difficult time falling asleep and/or staying asleep at night due to my coughing and bringing up phlegm. I do use a CPAP machine for sleep apnea.
Finally, I getting to my question. Do these symptoms sound like IPF progression? I look forward to reading your responses and any advice you have to offer.
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