Diagnosed with MAC pneumonia, FEV had declined 25% what us next!?

Hey all! This is my first post😌I have been diagnosed with alpha-1 antitrypsin deficiency, COPD with emphysema, bronchiecstasis, and factor v Leiden deficiency! I have had bilateral blood clots in my lungs, arms and legs. Now I was told I have mac pneumonia from mycobacterium avium intercellular complex, have been on treatment now for 6 months. My recent spirometer showed a decline in my Fev from 2.28 to 1.76. I have been trying to work but was told I needed to quit my job- working is making me too tired and I have no reserve . Has this happened to anyone else? Is this the normal progression of these diseases ?

8 Replies

  • Hi, Golfgirl2017, and welcome to the site. I'm so sorry to hear of what you are going through. There are several people on here who have some of the conditions you've got, though maybe not altogether. Hopefully they'll be along soon to reply to your questions. If you don't mind my asking, how old are you?

  • Hi Ergendl, I am 53.

  • Thanks - I should have explained, some people alpha-1 antitrypsin deficiency seem to experience lung issues at a younger age than many of us diagnosed in our 60s.

  • Just want to welcome you to the site and hope you can give up work as that sounds like a good idea.

    Thinking of you xxx

  • Good morning Golfgirl2017, and a very warm welcome to the group. I'm sorry that I can't help you, but I'm sure that someone will be along soon who can. Just wanted to say hello.

    Take care. Pam XXX

  • Hi Golfgirl. I have Alpha 1 deficiency too, though not the other issues that you are dealing with. If you want input from a lot of other Alphas you may want to join the Facebook groups and check out the websites of alpha1.org.uk and alpha1awareness.org.uk. All the best.

  • Sorry i dont know but sounds if u have everything .I have C,O,P,D, Bronchiectasis i had pneumonia few times made me weak . I was told by consultant my working days was over

    I was 58 and had worked from age 15 its a big shock and big change to my life .

  • Hey Collington, I was told last week by my Pulmonologist that it was time to quit my job. I am 53 and was expecting to work at least 10 more years. I have worked at my job for 25 years. It is a big shock and hard to accept but I am so tired of being sick, so I guess I will probably be leaving my career. If it helps my quality of life I am at a point to where I think I am ready to make a change.

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