CT Scan Shows End Stage Bronchiectasis In One Lobe

Hello Sue, You mention "you need not just a pulmonologist, but one who is experienced in treating bronchiectasis specifically" Any tips on how to locate a pulmonologist with a lot of bronchiectasis experience? Thanks for all your good input. Bill

Thanks for the response. I have been trying to go about my usual routine knowing that I don't feel quite right and I will continue to do this until my appointment. I've been trying to jog 4 miles on the treadmill at least 5 times a week. I haven't noticed myself being breathless but do get a "not quite right" feeling almost like a disconnect from my brain to my body. I guess this is normal because I don't feel quite right even sitting still. I think I am still trying to process that there is something actually wrong with me.

Hi Coco, So sorry about the abrupt announcement you received and then the long wait for your appointment - it is so nerve-wracking. I don't know where you live in Idaho, but I live in Boise. I only know a couple people in this area with bronchiectasis/NTM and I doubt our pulmonologists treat much of this just because there isn't a huge population base so not many cases. That being said, I have had a decent experience w/my pulmonologist here, though I was one of the youngest patients he treated with Bronchiectasis (56). I would be happy to compare notes with you if you are in the area. Though it's so hard, try not to draw any conclusions until you meet with the pulmo and you can come away with so much more information about your particular situation.
Also, your level of activity is super! Keeping your lungs working hard is so helpful for this condition, so you are already doing things to keep the disease at bay!

Hi, Shooei. I am also in Boise. I feel like I am worsening, rapidly. The day after I posted this I was on the treadmill and not really walking/jogging at a speedy rate for myself and when I got off was terribly winded and had severe pressure on both sides of my chest and when I woke up the next day had a rapid heart rate, high blood pressure and shooting pain in my left arm and neck. My husband took me to the ER and they did several EKG's and rounds of bloodwork to make sure I didn't have a clot somewhere. Nothing was found and they sent me home. The only thing that I had changed recently was that I was at the two week mark on a new inhaler (Flovent). The pulmonologists office told me to quit taking it and I have not had a dose for two weeks now but still feel worse than I did before Oct 28th. I took my first sample to the lab last week and haven't heard back from the pulmonologists office but the lab report looks like I have many gram positive cocci and many gram negative rods but also looks to me like it might not have been the greatest sample. At this point, I feel like I may have something else going on but I'm not sure what. I was feeling more myself at the beginning of the week and went for walks two days in a row thinking fresh air and not having to try to keep pace with the treadmill belt might be a better option for exercise and now I don't feel so great again. I would love any input you have on how you have found the pulmonologists in the area. December 9th still seems like such a long way off although I'm not sure what I am even expecting out of the appointment. I know there is no magic wand they can wave to make me feel like my old self but this sure seems to be progressing fast.

Wow, it's really hard to wait. Since your symptoms seem to be progressing, maybe ask to be seen sooner.
As for exercising, I usually take 2-3 short (10 min) walks when I don't feel my best instead of one longer walk. It seems to be less of a problem.
Also, do you have a pulse oximeter to monitor what is going on when you exercise? It might help to know what your blood oxygen levels are - and see if there is a downward trend that might indicate a worsening infection.
Sue

I am back to short walks after a year of very limited exercise. My mask sometimes interferes with the breathing but I always wear it when I am out.

Hi, Jane. Were you fairly active before?

Hi, Shooei. I am also in Boise. I feel like I am worsening, rapidly. The day after I posted this I was on the treadmill and not really walking/jogging at a speedy rate for myself and when I got off was terribly winded and had severe pressure on both sides of my chest and when I woke up the next day had a rapid heart rate, high blood pressure and shooting pain in my left arm and neck. My husband took me to the ER and they did several EKG's and rounds of bloodwork to make sure I didn't have a clot somewhere. Nothing was found and they sent me home. The only thing that I had changed recently was that I was at the two week mark on a new inhaler (Flovent). The pulmonologists office told me to quit taking it and I have not had a dose for two weeks now but still feel worse than I did before Oct 28th. I took my first sample to the lab last week and haven't heard back from the pulmonologists office but the lab report looks like I have many gram positive cocci and many gram negative rods but also looks to me like it might not have been the greatest sample. At this point, I feel like I may have something else going on but I'm not sure what. I was feeling more myself at the beginning of the week and went for walks two days in a row thinking fresh air and not having to try to keep pace with the treadmill belt might be a better option for exercise and now I don't feel so great again. I would love any input you have on how you have found the pulmonologists in the area. December 9th still seems like such a long way off although I'm not sure what I am even expecting out of the appointment. I know there is no magic wand they can wave to make me feel like my old self but this sure seems to be progressing fast.