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Pulmonary Sarcoidosis: How are you dealing with it?
Lung Health | Last Active: Sep 23, 2023 | Replies (126)Comment receiving replies
Have been waiting for someone to inquire about Sarcoidosis.
Discovered when I was young (19) from test results, no treatment.
Lived with no ill effects at all. Doctor include chest X-ray as apart of yearly check-up. Sarcoidosis can appear in any organ in the body mine was lungs. Never a smoker always healthy.
However it reared itself after I turned 40, was asked to take Prednisone agreed but not the drug for me as it turned out. X-rays began to show more nodules then it became inactive, of course the nodules remained.
It is still considered inactive but unfortunately it has left me with scar tissue on the both lower lobs. Which cannot be corrected. Now on oxygen 24/7 which helps me to have better energy and live life to the fullest.
Do daily stretching, breathing excercise and keep moving to ward off loss of muscle mass. Now at 77 just changing life slightly for better quality.
Eat well ,laugh at life, stay active and when needed ask for help.
Be well-Duchess
Replies to "Have been waiting for someone to inquire about Sarcoidosis. Discovered when I was young (19) from..."
I was diagnosed with Sarcoidosis on 5/30/23. I have some granulomas in my lungs and due to granulomas in my kidneys I had kidney failure.
It is quite the journey. I have been on Prednisone now for over a year. I have three more months and then I am done.
I struggle with being tired a lot of my time.
I find this very interesting because I had a Dr do testing and sent me for a consult with a Sarcoidosis Specialist, but then just left me hanging and never followed up with a final Dx, or non-Dx, just dropped it. But, since then, I have had so many symptoms of Sarcoidosis, including lung nodules and scar tissue on one lower lobe. I have MCI, so can't recall the other symptoms I had right now, but always wondered if I did have Sarcoisodis. I know there were other symptoms that pointed to it, but just can't think of them right now. In my life, just another time that Drs have thrown around Dx's, but then left me hanging. I did finally get the courage to be my own advocate and speak up to the Drs, but this was after that episode. I am curious if you are on oxygen because of oxygenation issues? I have developed these issues since about 2019 and still continue to deal with oxygenation "dips" all the time, even into the upper 70s. But, again, Drs have failed me! LOL! Are oxygenation rate issues related to Sarcoidosis? Just wondering. Thank you for sharing. Your post really sparked my interest.
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Thank you for sharing !!
Mine was found on a cardiac calcium scoring, it was an incidental finding. At age 65
I go for CT scans at least yearly
I have had no treatment except for an inhaler. He nodules go away and come back. I am only worried about nodules turning into Cancer, so I keep rechecking