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monkeysmom (@monkeysmom)

Pneumonia, MAC and Aspergillus ?!?

MAC & Bronchiectasis | Last Active: Aug 22 5:38pm | Replies (8)

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@totty

Jane I had not read all of the other posts today – only yours when I responded. My response is not applicable to your situation I don’t think; attitudes and current situations entirely different but the love and desire to do what the patient wants is the same. I will hold you in my thought daily abs hope your continue to seek support here. It helps!

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Replies to "Jane I had not read all of the other posts today - only yours when I..."

I thought that even though your situations are s bit different that your post was thoughtful and encouraging. Thank you for taking ti.e to tell us how the two of you are coping. I love how you have found a new normal.
The people here on Connect are so empathetic.
Sue

@totty i appreciate everything you have said, it does help to hear others battles and how they are doing day to day.

I think the hardest part for me is being so far away from him, and his lack of seeking second opinions or even allowing me to take him somewhere that has a team fighting for him. I believe I said it in a post prior but I believe in my heart he is tired. He has been fighting lung issues more than 3/4 of my life. I think with each new diagnosis he feels more and more defeated. He had been ordered pulmonary rehab which he simply couldn’t do. He can’t walk more than 10 feet even with his O2 on, which is on all the time. I just think how discouraging this must be for him. A giant of a man who is, was and always will be my greater than life hero.

Again, I very much appreciate your story, it helps so much to know we are not alone.

-Jane