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Ongoing SOB, chest tightness & inflammatory chest. Thoughts?
Lung Health | Last Active: Jun 2 11:21pm | Replies (23)Comment receiving replies
I have shortness of breath, fatigue, and chest tightness that is unbearable
Heart is good, tests all good.
Just recently had an HRCT scan which showed Air Trapping
So I have been on 3 inhalers for a week now.
It has not helped the chest tightness I am praying it will
I have gone from very active to struggling 😪 just to do daily activities
Even had a pulmonologist yell at me saying nothing is wrong with my lungs all while viewing a test from 2, 3 years ago.
I recently had another PFT test & found out he will be reading the results
Now I am worried he will prevent me from getting the help I need
I don't know how bad this will become
Replies to "I have shortness of breath, fatigue, and chest tightness that is unbearable Heart is good, tests..."
@babesmom Definitely need a new pulmonologist, take the breathing tests, see if they recommend pulmonary rehab. THREE inhalers? Trapped air? Ask about the Apreo BREATHE-3 clinical trials, there may be one near you. It's about devices permanently inserted into your lungs to release the trapped air. I'm working through my pulmonary rehab now so that I can go for a screening.
@babesmom It is so frustrating not to have answers when we are feeling ill, especially when doctors don't seem to hear us. I am curious about your statement "Now I am worried he will prevent me from getting the help I need." Did you feel he was angry or upset with you? Doctors are professionals, and most are open to changing their opinion and approach when additional tests give them more information.
Do you have a diagnosis of asthma, COPD, or any other lung disorder?
@babesmom hello, and I’m so sorry you are dealing with this. I have had similar issues with my lungs. My symptoms go on and off but when they flare up x it’s bad. I can’t move with out gasping for air, I can’t walk for 5 feet without gasping for air, tight chest, shortness of breath-
My first Respiratory Doctor (I’m in Europe) said, I’m fine, gave me a load of inhalers and told me take a holiday to a warmer places. Omg !! I moved to a different specialist and found a great doctor that has been digging into my symptoms.
I would definitely recommend moving doctors until you find one that listens and cares not just tickets a box and takes your payment.
Anyone, - all my test have come back clear except for my LFT - my DLCO’s are lower then average and when I’m in a flare up, they go down significantly low. So permanent scaring which is what we want to avoid. My body responds to are steroids-
So far I have tested clear form Auto immune but regardless I’m being out on CellCept as a steroid sparing drug, and it should settle down the inflammation and clear it all up. It’s a slow moving medication . I will most likely be on this medication for 3-4 years, not ideal but im looking forward to having healthy lungs again.
We are not sure why I have this has happened or what caused it, but it did come on just after I had Covid.
Prior to that I had exercised induced asthma and seasonal asthma but Covid took my lungs into this direction.
Although I am stable now, I am on 7.5 mg of steroids I am starting this medication in a week to avoid further flare up and prevent what could be permanent lung damage if I get another flare up.
Maybe you can look into this medication as well. It will keep you here for your family and that’s most important.
Is anyone on this medication that can give me advice?
It’s CellCept and generic name Mycophenolate
Would love to hear from you.
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@babesmom
I seriously hope that you request that your family doctor refer you to another pulmonologist. The one that you are seeing sounds incompetent, unprofessional and definitely rude. You know your body better than anyone else. Do not accept anything less than respect and professionalism. It’s your right to get a copy of the radiology doctor’s report and also a cd disc copy of the imaging.