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Lung Nodules & Immune Dysfunction
I’m reaching out to see if anyone here has experience with immune dysfunction (such as mast cell activation, Primary Immunodeficiency or similar conditions) along with lung nodules or masses.
I’ve recently had imaging that showed multiple non-calcified nodules, along with some mediastinal fullness. I’m currently in the process of further evaluation (CTA and pulmonology referral), and likely heading back to Mayo for more comprehensive care.
I’m not looking to panic, I'm a bit scared, so I’m trying to stay grounded and informed. But I would really value hearing from others who have been through something similar.
• What was your diagnosis or outcome?
• Were there any challenges or delays in getting answers?
• Is there anything you wish you had done differently early on?
• Any advice on navigating specialists or advocating for yourself?
I know every case is different, but hearing real experiences would mean a lot as I move through this. We found the nodules (3) searching for the cause of my upper back pain, pain when breathing at times. I also experience shortness of breath and fatigue with exertion, but it comes and goes.
Thank you in advance for sharing. I truly appreciate any information.
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Hi, Jaimie.
I have primary immunodeficiency, and a whole lot of comorbidities. I have nodules as well, and an excellent infectious disease specialist. Through much testing and researching my life history, we determined that my nodules are the result of a spore-bound infection during my childhood when my family lived in Texas. I also have severe lung damage from a pulmonary infarction, which effectively killed the upper lobe of my right lung. During that time, I had the pulmonary infarction as well as more than 20 pulmonary embolisms, and a DVT. All of that led to a paralyzed hemi-diaphragm. I am also on 3L of oxygen 24/7/365. I am waiting to have surgery to fix the diaphragm at Mayo after I lose 20#.
So, what about you? What have you been diagnosed with besides the nodules? Do you have PI? MCAS? What else? How long have you known about the nodules? Do you also experience a high heart rate with your shortness of breath and fatigue? How about diaphoresis? Dizziness? Vertigo? Blackouts/passing out? How’s your blood pressure? Are you anemic? Do you use Cpap or BiPap? Well, if you get this far, come find me on messenger.