I Have Experienced These Physical Changes Since My IPF Diagnosis
Chronic illnesses inevitably cause physical changes in a person’s body. These alterations include scars from surgery, procedures, and the placement of a medical device such as a port-a-cath or a peripherally-inserted central catheter, or PICC line. Since being diagnosed with idiopathic pulmonary fibrosis (IPF), I’ve experienced many physical changes — and while some of those differences are visible, others are not.
Earlier this year, fellow columnist Mark Koziol wrote about how his body has changed during his IPF journey. I was intrigued by his column and intended to share how my body has changed since my diagnosis. However, while I can relate to Mark’s experience pre-transplant, I have experienced additional physical changes that affect aspects of my life that I previously enjoyed, such as eating certain foods.
In the Pulmonary Fibrosis News Forums, we talk about the ways that this disease affects our lives. Although IPF is not limited to its physical impact, I’ve recently recognized the full effects of this disease on my body.
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Following is a list of ways that IPF has, directly and indirectly, changed my body over the past three years. I am curious to know if others can relate to my experience.
- Metallic taste and dry mouth: When I started taking immunosuppressant medications for IPF, I was advised to increase my water intake to help my kidneys function at their optimum. I found that drinking lots of water also helped to alleviate the dry mouth and metallic taste I’ve had since beginning the antifibrotic medication Ofev. My appetite has reduced due to nausea from the medication, and I sometimes experience breathlessness while eating as well.
- Puffy face or “moon cheeks”: If you’ve ever been on prednisone, you’ll understand what I mean by “moon cheeks.” Since being diagnosed with IPF, and while taking steroids episodically to treat viruses and infections, I think that my face has changed its shape — it seems to be a little rounder and less narrow. Have you experienced this change, despite not taking steroids continually?
- Lack of coordination, shaking, and weaker fine motor skills: Given the type of work that I do, these changes have been very challenging for me. I sometimes struggle with typing, writing, and taking notes due to shaking, which I attribute to the use of oxygen or steroids that are part of my long-term treatments. I feel frustrated that these symptoms are visible to others. I see concerned looks on the faces of my colleagues when I become discouraged over my ability to perform certain tasks.
- Swollen legs and feet: Fluid retention and swelling in the feet can be incredibly painful and make walking long distances and finding comfortable shoes challenging. Thankfully, it doesn’t happen very often, and when it does, it is usually a sign that I am trying to do too much.
- Muscle pain: As a 31-year-old, I get frustrated with muscle pain. I used to push my body to its limits through sporting activities and social events, but I never experienced the degree of muscle pain I’ve had since my diagnosis. I feel pain in my upper back and shoulders, which I believe is due to the chronic dry cough associated with IPF. I often visit a massage therapist to relieve my discomfort.
How has your body changed since your diagnosis? Please share in the comments below.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.