Hi, Melissa-

I was diagnosed with end stage bronchiectasis in my right middle lobe in October of 2020. I was also very active before the diagnosis. I was able to go NJH in October of 2021 and again in March of this year and have been so pleased with the level of care I have received there.
I do not have an NTM but did have bronchiectasis so progressive that it had replaced my entire right middle lobe.

When I was at NJH in 2021 they did a bronchoscopy and found an AVM or Vascular Lesion on my airway. This was not seen on any of the three CT scans that I had previously. When I returned this year miraculously, my right middle lobe looked much better. I have been diligent with Levalbuterol, 7% saline and airway clearance twice a day. However, despite that portion of my lung looking better and my oxygen levels being within a normal range I am still having to decrease activity. Is it possible that Bruce may have a pulmonary AVM that has not been diagnosed? If you read about them they can cause shortness of breath. Which I think is what is causing my decrease in ability to exercise and be active.

I am going back to Colorado at the end of the month to have my right middle lobe removed and with it the AVM that is on my airway. The surgeon said my lung looks well enough now that if that was all he was looking at he would not operate but the AVM is a ticking time bomb and if it were to burst would drown me.

I know there are many other things to consider since he is dealing with NTM but this just sounded so similar to my decreased ability to be active that I wanted to mention in to you. Especially, since it was only seen through the scope and not on a CT. I was lucky that I had my bronchoscopy at NJH and my pulmonologist there knew that the lesion looked suspicious and did not try to biopsy. Instead he sent me for a second diagnostic bronchoscopy with an ultrasound that identified the AVM.

Sending positive thoughts your way that you find answers and Bruce is able to resume his regular activity.

Hats off to you as a superb wife. My husband has been such a support to me so I know how much it means to have someone standing by your side and having to deal with most of the day to day things that make this world go round.