Drop in Fev1

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gunelle

Guest
Hi. I've had a drop in my lung function over the last months. I'm usually at 76-82%. But have gone down to 64% I don't feel worse over all. On the contrary have been walking more and have more energy. My doctor says it can go back up, just not sure how to get it back up... And worried might decrease further😐 anyone have any experience? Thank you.
 

kenna2

Member
I've had this happen many times. It's frustrating and completely normal. Sometimes I will feel amazing and my pfts will be low or I will feel like crap and my pfts are amazing. You're not the only one this happens to. Just remember, your pfts are just a number and it's more important on how you feel than just the number. Just keep doing what you're normally doing and they should go back up. No worries
 

rubyroselee

New member
I typically run around 80%. One time I was 55%, but I really didn't feel bad. Turns out I was just exhausted from having two little kids. I found that when I'm tired or stressed, my numbers go down even though I'm feeling pretty good. If you're not having any other symptoms, I wouldn't worry too much about it.
 
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gunelle

Guest
Thank you for replies. My doctor just told me that I have a mycobacteria. They are still studying it and will know the final results in one month. I am a bit worried...any one have experience with mycobacteria?
 

rubyroselee

New member
I have not cultured that before, but I know a lot of people have it. Hoping you're able to get rid of it and get your numbers back up :)
 

atrippet

New member
Before I saw your post I was going to mention mycobacterium. It's a silent dropper. I was lucky to have it treated last year at National Jewish in Denver. Dr. Nick is the leading expert in mycobacterium. He writes the protocol for the cf foundation. It is typically slow growing. If you have dropped that much you need to get it treated ASAP. I had MAC (Mycobacterium Avium) 8 years ago. I was able to take oral antibiotics for a year and get rid of it. Last year I grew MAB (mycobacterium absessus) and it requires long term use of IV antibiotics. 3-12 months. I was able to be on 3 month regimen. I have not grown it in over a year.
 

Katie615

Member
Thank you for replies. My doctor just told me that I have a mycobacteria. They are still studying it and will know the final results in one month. I am a bit worried...any one have experience with mycobacteria?

I cultured M.Abbssesus back in 2013/2014 and did 13 months of home IV antibiotics, oral and inhaled. Since then I have only grow it twice. Initially I was treated at UCSF and now I am at Mass General in Boston. Depends on your symptoms and the doctors involved. Most likely they will send you to an Infectious Disease specialist and they will work with your CF team on a treatment plan if necessary.

Right now my doctors are treating all CF symptoms as they would normally, if I don't get better after those, then they will treat from an infectious disease standpoint.

I have to say the 13 months that I did in 2014/2015 took a toll, it was tiring and annoying. But we all do what we have to :/
 
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