This thread has been very helpful for I was just diagnosed with pseudomonas aeruginosa following a bronchoscopy. I was offered either the quinolone family (I commented on that a couple of days ago) or Tobramycin and am scheduled to start “Toby” tomorrow.
Background:
2004 severe pneumonia following a trip to NYC that took 2 rounds of the Z-pack to shake. Meanwhile my mother had been fighting MAC and BE for 3 decades and went on and off levaquin which resulted in severe peripheral neuropathy. I was her advocate/caretaker while she lived in assisted living. She died in 2009.
In 2012 I was diagnosed with MAC and immediately started and completed the 18 month Big Three. Yes, it was awful but I stuck with it and CT plus bronchoscopy showed no sign for years. In fact I hiked in the Alps Switzerland and Peru different years with no problem. Then along came COViD which I so far have had 3 times. And this past October figured out I. Eeded to have oxygen at night so my oxygen level wouod stay above 90.
But now the wrinkle that no one here has mentioned: in 2019 I fell backwards and landed on my wrist on a concrete patio. As the osteo surgeon said, I “rearranged all the bones of my wrist “and fractured the smaller of the two lower arm bones. Following surgery, I was referred to an endocrinologist. Up to that point I had maintained osteopenia because I was very active (hiking, biking) and upper body strength routine including bands. But my daughter was deathly ill and ultimately died in 2021 so rather than take the time to research Prolia, I went ahead and started at at my doctor’s strong recommendation. In retrospect, this was a huge mistake because it lowers one’s immune response for at least two weeks folllowing the every six months infusion. So……. Although MAC had started to make a reappearance, I had been doing well with occasional treatment with anox-clav. But at this point and with covid, I lost ground. Then I broke my foot and could not walk for several months. Terrible time of my life. Then my daughter died. I miss my adult daughter terribly.
Anyway, after another probable bout with covid last spring I then had surgery for a complete hysterectomy and began a long downhill slide with flares. Nothing seemed “right” and the 7% saline neb that had worked so very well just wasn’t cutting it in spite of participating in an excellent pulmonary rehab program the previous Fall.
So now here I am with MAC, BE and now pseudomonas. And I had to postpone my Prolia infusion which means my little osteoclasts are already busily munching away on my bones.
I hope to start “Toby” tomorrow and pray that it will zap the pseu aer so I can be cleared to take the Prolia although I would much prefer to take something else and am looking into alternatives.
BTW I did try Brinsupri last fall but developed hives on the third day so stopped.
And I am 81.
Any comments re any thing I have said here or other courses of possible action are welcomed. I am so sorry that we all need to be here. Sending love.