1. < COPD: Chronic obstructive pulmonary disease

Confused and hoping for answers

Posted by raisanicole @raisanicole, May 27, 2023

Dec30 '22 ended up in ER with chest pain (upper area just bellow neckbones), fatigue and palpitations. All cleared so consulted cardiologist (all testing and imaging came back ok, no is not my heart. Pulmonologist found low PFT and diagnosed Alpha 1 carrier, SNull genotype. Started on Trelegy since Jan '23. After 5 months and 3 pulmonologist consultations, symptoms remain the same. PFT at 64%, xray shows mild bronchial obstruction. Sometimes It hurts when breathing in and out/feel I need medication to breath well. Feeling tired and I push myself most days. Drs say Alpha 1 is not to blame & its Acid Reflux. GI provider cleared that out. So there is no diagnosis, and this is driving me very concerned and stressed. Any suggestions?

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barry98888 | @barry98888 | May 28, 2023

A lot of your symptoms sound similar to my own over time and mine involved my liver and a variety of factors which made understanding my test results difficult for physicians. I see that excess levels of abnormal antitrypsin can cause liver issues.

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1 reply
donnab213 | @donnab213 | May 29, 2023

I was diagnosed with emphysema a year ago and understand your frustrations. I am at 40% and like you, I'm tired most days but push through. I walk 2 miles a day, go to the gym 3 days a week and play golf once a week. I'm not on O2, just inhalers.
I've learned to live with this disease but also three important things. One, you must stay active and keep moving in whatever form works best for you. Secondly, mindset is everything! I have my days but I try to remind myself of how fortunate I am of what I'm still able to do. I realize this is a progressive disease but my goal is to keep it at bay as long as I can.
The other thing is that you must be your own best healthcare advocate. Ask questions and keep asking questions. If you don't feel your current medication is working or helping tell your physician. Find a pulmonologist that you trust and will actually listen to you. If you have that now, you're in a great place.
This group is a good place to ask questions as well!

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1 reply
raisanicole | @raisanicole | May 29, 2023

Thank you for your uplifting comments. I will certainly follow your recommendations. Hope everything keeps well for you❤️

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raisanicole | @raisanicole | May 29, 2023
In reply to @barry98888 "A lot of your symptoms sound similar to my own over time and mine involved my..." + (show)
@barry98888

A lot of your symptoms sound similar to my own over time and mine involved my liver and a variety of factors which made understanding my test results difficult for physicians. I see that excess levels of abnormal antitrypsin can cause liver issues.

Jump to this post

Thanks, It us frustrating indeed when doctors just dont understand our symptoms

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raisanicole | @raisanicole | May 29, 2023
In reply to @donnab213 "I was diagnosed with emphysema a year ago and understand your frustrations. I am at 40%..." + (show)
@donnab213

I was diagnosed with emphysema a year ago and understand your frustrations. I am at 40% and like you, I'm tired most days but push through. I walk 2 miles a day, go to the gym 3 days a week and play golf once a week. I'm not on O2, just inhalers.
I've learned to live with this disease but also three important things. One, you must stay active and keep moving in whatever form works best for you. Secondly, mindset is everything! I have my days but I try to remind myself of how fortunate I am of what I'm still able to do. I realize this is a progressive disease but my goal is to keep it at bay as long as I can.
The other thing is that you must be your own best healthcare advocate. Ask questions and keep asking questions. If you don't feel your current medication is working or helping tell your physician. Find a pulmonologist that you trust and will actually listen to you. If you have that now, you're in a great place.
This group is a good place to ask questions as well!

Jump to this post

Hope you keep doing better and better everyday. Your words inspire me and give me hope❤️

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