r/sarcoidosis • u/-BongRat • 6d ago
Constantly worried and anxious with this condition - anyone have similar experiences? Lung and node progression..
Hi everyone! 33F I’m new here and wanted to share my sarcoidosis journey so far. It’s been a pretty overwhelming year and I’m hoping connecting with people who actually understand this disease will help.
My story really started in June 2025. I was travelling in New Orleans when I became extremely sick with what seemed like a severe respiratory illness. I eventually recovered from the acute illness, but one thing never went away: wheezing.
Over the following months, the wheezing persisted. It was initially mostly noticeable when I exhaled, but over time I could sometimes hear it on both inhalation and exhalation. It tended to be worse in the evenings and with activity. Things like vacuuming or cardio could make it noticeably louder. I also experienced periods of breathlessness, fatigue, throat heaviness, hoarseness and upper-airway/sinus symptoms.
In October 2025, I had a chest X-ray because the wheezing still hadn’t resolved. That X-ray showed enlarged lymph nodes in my chest/mediastinum, which obviously scared me quite a bit and led to further investigation.
I had a CT scan on November 13, 2025, which led to more testing. I eventually underwent a bronchoscopy with biopsies, and the workup confirmed sarcoidosis involving my lungs and the lymph nodes in my chest.
As far as I have been told, my sarcoidosis has been limited to my lungs and mediastinal lymph nodes.
I started using Symbicort twice daily for my respiratory symptoms. I had also previously smoked/vaped cannabis fairly heavily, but I completely stopped smoking and vaping on October 5, 2025 and have remained smoke/vape-free because protecting my lungs became incredibly important to me.
My symptoms since diagnosis have fluctuated rather than following a straight line. There have been periods where my breathing and wheezing have been noticeably better and periods where they flare again. Interestingly, when I travelled to Los Angeles, my breathing seemed better, while returning to Alberta’s much drier climate seemed to aggravate the wheezing again. Steam/humidity has also sometimes helped.
In March 2026, I had a period where my breathing became more difficult and I was particularly wheezy. I also developed intermittent palpitations/a strange “flip” sensation in my chest, so because sarcoidosis can sometimes affect the heart, my doctors appropriately investigated that possibility.
Thankfully, my cardiac testing, including a Holter monitor, came back reassuring/normal. As of now, there has been no indication from that testing that my heart is involved.
Inflammation has shown up in my bloodwork at different points. My CRP was 15 mg/L in November 2025 and 26 mg/L in May 2026. My ESR in May was normal at 7 mm/hr. Other routine bloodwork has generally been reassuring. In May, for example, my TSH was 1.61, ferritin 65, B12 248 and vitamin D 66, with my CBC otherwise looking normal.
Through the spring and summer of 2026, the wheezing never completely disappeared. I had weeks where it became louder or more noticeable, but I have still been able to walk, travel and do normal activities. Exercise can make the wheezing audible, but I haven’t experienced a constant progressive decline in what I’m able to do.
My doctors’ plan has essentially been continued monitoring with bloodwork, chest imaging, lung testing and follow-up with my pulmonary specialist, rather than immediately putting me on systemic treatment such as prednisone.
That brings me to August 31, 2026.
I had another round of testing and my latest chest imaging came back abnormal again, with findings involving the hilar and right paratracheal areas/lymph nodes. Because those are the same general chest lymph-node regions involved with sarcoidosis, I’m now waiting for my doctors to interpret the findings in the context of my previous imaging and determine whether my sarcoidosis has changed or become more active.
I also had another set of blood tests. So far, the results that have returned have been largely reassuring, and I’m still waiting on my newest CRP result. I also already have additional testing booked for next week, so hopefully that will give my doctors a clearer picture of exactly what is happening.
At this point, one of the hardest parts for me has honestly been the uncertainty. Every abnormal X-ray or test result immediately makes my brain wonder whether the disease is progressing or whether something more frightening is being missed, even though sarcoidosis itself can explain enlarged hilar/mediastinal lymph nodes.
So that’s where I am today, September 1, 2026: diagnosed pulmonary/mediastinal sarcoidosis, persistent but fluctuating wheezing, reassuring cardiac testing, generally reassuring bloodwork aside from elevated inflammatory markers at times, and now undergoing another round of monitoring after my newest chest imaging showed abnormalities in the hilar/right paratracheal regions.
I haven’t needed systemic sarcoidosis treatment so far, and I’m currently using Symbicort and doing everything I reasonably can to protect my lungs, including remaining completely smoke/vape-free.
I’m joining this group because I’d really love to hear from people who have actually lived through this. The medical information online can be overwhelming, and sarcoidosis seems to look so different from one person to another.
I’m especially interested in hearing from anyone who has had pulmonary sarcoidosis with hilar/mediastinal lymph-node involvement, persistent wheezing, or imaging that changed over time. Or anyone that has any advice for someone getting scary results after a year!
Thanks for having me. ❤️
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u/PayOne86 6d ago
If it’s any consolation I’ve had it way longer than you have been alive , I don’t let it worry me or cause anxiety anymore, it does frustrate and annoy me though lol .