O2 drops when walking but moment I stop or sit down it goes back ip.

Posted by nancyh1973 @nancyh1973, Jun 19 5:51pm

I I started having shortness of breath and feeling like I had a stack of books on my chest about a year ago. I’ve been going to the doctors and they have done a heart Kath so my heart is fine. They have all kinds of immune immunology test to make sure I don’t have any auto immune diseases, the doctor put me on a beta blocker which helps significantly but have no idea what is wrong with me. I do Have fibromyalgia And Reynolds syndrome. Has anyone else experienced this?

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vic83 | @vic83 | Jun 19 8:04pm

I have this issue. Sitting on the sofa my O2 is fine but with exertion (and with sleep) my O2 falls to unsafe levels. My first SOB started 2.5 years ago. Investigation found lung cancer and cardiac blockage. I had lung surgery, cardiac stent and radiation however my shortness of breath continued and is a bit worse. Interstitial lung disease specialist evaluated pulmonary function tests, CT scans and heart tests and said I had at least 3 reasons to have shortness of breath, and abnormal PFTs: interstitial pulmonary fibrosis (previous smoker), recent episode radiation induced pneumonitis, and possible pulmonary hypertension. I am on O2 now for exercise and sleep.

connibar | @connibar | Jun 20 8:35am

@vic83 , yes, I have Interstitial lung disease and it is because my lungs are retaining carbon dioxide. My Pulmonologist near me, could not diagnose me properly, altho it shows on my CT scans. My Husband took me to Mayo in Rochester, where they properly diagnosed the cause and are treating me.

vic83 | @vic83 | Jun 20 8:50am

In reply to @connibar "@vic83 , yes, I have Interstitial lung disease and it is because my lungs are retaining..." + (show)

Are you on any medication besides the Beta blocker which I assume is also for high blood pressure. I am also at Mayo...

larryma | @larryma | Jun 20 9:38am

If the docs haven’t done a chest x-ray they need to. You lungs can sound clear and still have issues. Request a chest x-ray if you haven’t had one.

ead | @ead | Jun 20 10:47am

In reply to @connibar "@vic83 , yes, I have Interstitial lung disease and it is because my lungs are retaining..." + (show)

What treatment course did the clinic Dr. recommend for the fibrosis? Just curious?

connibar | @connibar | Jun 20 3:57pm

In reply to @vic83 "Are you on any medication besides the Beta blocker which I assume is also for high..." + (show)

@vic83, yes Mayo put me on Prednisone and Mycophenolate

vic83 | @vic83 | Jun 20 5:49pm

In reply to @ead "What treatment course did the clinic Dr. recommend for the fibrosis? Just curious?" + (show)

Not sure to whom question is directed, but in my case anti-fibrotic drugs nintedanib (Ofev®) and pirfenidone (Esbriet®) were on the table with preference for Olev. However, since my fibrosis seems stable, the risk/benefit to take the drug was not convincing and instead I was prescribed oxygen for the pulmonary hypertension.

spunkye | @spunkye | Jun 20 6:10pm

My nebulizer broke and I would love some feedback/advice re buying one that you all are happy with.
Thanks!

spunkye | @spunkye | Jun 20 6:11pm

Sorry I posted this in the wrong place

samiam1949 | @samiam1949 | Jun 23 10:44am

In reply to @connibar "@vic83 , yes, I have Interstitial lung disease and it is because my lungs are retaining..." + (show)

Mayo is the best!

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