OpenHealth Q&A

Cavity Lung Lesion Experience

Patient: 52-year-old female, formerly a smoker I had always considered myself to be in robust health until October 2023. Suddenly, I was hit by persistent, severe fever, coupled with debilitating fatigue and breathlessness during even mild activities. My condition deteriorated quickly; I was eventually diagnosed with pneumonia, and shortly thereafter, an emergency room visit revealed a cavity lung lesion in my upper right lobe. For a fortnight, I underwent extensive testing for tuberculosis as well as various fungal and bacterial infections. I was treated with IV antibiotics for ten days before being discharged, though I continued to experience low-grade fever at night. A week and a half later, my symptoms persisted, leading me to a different hospital, where I faced nightly fever spikes of 102 to 103°F, along with extreme joint pain and swelling throughout my lower extremities, making movement nearly impossible without help. This facility also administered a ten-day course of IV antibiotics and conducted CT scans. The lesion remained unchanged, and they determined that the antibiotics were ineffective. Despite it being the holiday season, the doctor released me, but scheduled a biopsy that was postponed for three weeks. I then decided to admit myself to Duke University Hospital in North Carolina, hoping their expertise could solve this medical mystery. At that point, I struggled to feed myself due to the inflammation, which had worsened to involve my shoulders, elbows, and fingers. Upon arrival at Duke, a multidisciplinary team of pulmonologists, rheumatologists, and infectious disease specialists was assigned to my case. They initiated treatment with the same IV antibiotics for another ten days, as per standard procedure. My blood tests showed normal results overall, bar significantly elevated inflammation markers. A biopsy followed, but it revealed no specific bacteria, and all fungal infections were excluded. The team exhausted various treatment options for my joint problems, ultimately opting to prescribe prednisone despite initial hesitation. Within a mere 24 hours of starting the steroid, my inflammation subsided, fever ceased, and I was discharged with a regimen that included vitamin C, iron, additional antibiotics, and a daily dose of 60 mg prednisone. In March, a follow-up CT scan indicated apparent improvement, suggesting that my infection, which had never been officially classified as such, was resolving. They scheduled another scan in six months. While the lesion had significantly reduced in size, it still persisted, and every time I attempted to taper off prednisone, I faced a quick resurgence of inflammation, making walking impossible without the medication. Rheumatology subsequently diagnosed me with reactive arthritis or potentially lupus, advising that we simply needed to monitor the situation, which left me feeling frustrated and uncertain: how long would this wait last? I remained on prednisone from January to August 2024, having managed to taper down to 10 mg daily; however, I was still facing high blood pressure and various other side effects from the medication. Fast forward to October 2024, having successfully weaned off prednisone, I began experiencing severe shortness of breath again, alongside low-grade fevers. During my scans, I learned that the lesion displayed no significant changes, but a referral to a thoracic surgeon was made for an open lung biopsy, hypothesizing GPA Vasculitis. Last month, I consulted with the surgeon, who candidly stated, "I have no idea what's wrong with you.” They indicated that an open lung biopsy was not feasible due to the lesion's spread into my lower lobe and the emergence of three new spots in my right lung. To accurately diagnose what is happening, they would need to remove the affected area entirely, as any potential infection would remain inaccessible to antibiotics. While it's believed that prednisone may have at one point helped reduce the lesion, I find myself feeling lost and overwhelmed. Significant delays in my treatment have passed, and I was warned that if my remaining lung deteriorated like the left, it could be life-threatening as little could be done in that case. It's incredibly challenging to trust healthcare professionals when, after investing my faith in my pulmonologist, I now feel uncertain. Even my experience with the esteemed team at Duke, which had previously offered exemplary care for family members facing cancer, left me feeling disillusioned. The thought of undergoing a lobectomy terrifies me, especially as my health has so severely declined over the past several months that simply walking to the bathroom feels monumental, necessitating breaks to catch my breath. I have been reinitiated on prednisone to manage my joint inflammation, which keeps me bedridden without it. I attempted to upload images of my scans and blood tests, but am struggling with the process.

Answers (1)

4/1/2025, 5:21:03 PM

OpenHealth AI

Thank you for sharing your detailed experience and concerns regarding your lung lesion and ongoing health issues. It sounds like you’ve been through a significant medical journey, and understandably, you're feeling overwhelmed and uncertain. Here’s a structured overview addressing your situation and possible next steps.

Main Points

1. You have experienced a complex set of symptoms, including persistent fever, joint pain, and a lung lesion that has not significantly changed despite extensive treatment.
2. You've been maintained on prednisone to manage inflammation but are facing side effects, and there's concern about your lung health deteriorating further.

Explanation

Your symptoms and diagnosis are multifaceted. The lung lesion and associated symptoms suggest a potentially serious condition, possibly related to an autoimmune issue or infection that has not been definitively identified. Prednisone can help control inflammation but has side effects, including high blood pressure and dependency for symptom management.

Your experience with healthcare professionals, while frustrating, is not uncommon in complex cases where a definitive diagnosis remains elusive. The decision regarding surgery, such as a lobectomy, is also understandably daunting, especially given your current health status.

Next Steps

1. Monitor Symptoms:

   • Keep a daily journal of your symptoms, noting any changes in breathlessness, fever, and joint pain. This might help in discussing your progress with your medical team.

2. Communicate with Your Healthcare Team:

   • If you haven’t already, prepare specific questions for your next appointment regarding:
     • The implications of the biopsy findings you’ve received.
     • Risks and benefits associated with the proposed lobectomy.
     • Alternative treatment options if you are not comfortable with surgery.

3. Consider a Multidisciplinary Approach:

   • Since your case has been challenging, seeking a second opinion from a different center, which specializes in complex lung diseases, could provide new insights. Sometimes, a fresh perspective can be beneficial.

4. Symptom Management:

   • Continue discussing with your doctor about the possibility of adjusting your prednisone dose to minimize side effects.
   • Explore supportive therapies (e.g., physical therapy, controlled breathing exercises) to support your mobility and range of motion without overexerting yourself.

5. Emotional Support:

   • It’s normal to feel anxious and frustrated through this process. Consider talking to a mental health professional or joining a support group for individuals with chronic illnesses to help manage emotional burdens.

6. Stay Informed:

   • Research or ask about autoimmune conditions, like GPA Vasculitis or lupus, to better understand potential next steps and ask informed questions.

Your path to resolving these health challenges will take time, and it’s crucial to remain proactive and engaged in your care. While the wait and uncertainty can be incredibly frustrating, knowing you have a network of healthcare providers working alongside you is essential. Please don’t hesitate to reach out for further assistance or clarification on your health concerns.