CT Scan Shows End Stage Bronchiectasis In One Lobe

Posted by Echo R @coco1970, Oct 27, 2020

I just turned 50 and have lead an active and healthy life other than being hospitalized twice when I was very young with pneumonia. In March I started having trouble with chest heaviness and just a general “not right” feeling in my chest. I recently had a CT scan and the findings were end-stage bronchiectasis in my right middle lobe. I will admit that I lead a busy life and have maybe not been so in tune in the last 5 years with subtle symptoms. My follow-up appointment with my pulmonologist is over a month away and I am terrified. Has anyone else been diagnosed with end-stage bronchiectasis? I know there is going to be no repairing this but will it mean a lobectomy?

@poodledoc

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

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Hi Bill. Do you still need help locating a good pulmonologist? If so, what city do you live in? Perhaps I can help.

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@coco1970

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.

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Coco1970, If you do not already own one; you may consider ordering a pulse oxometer online. No prescription needed, cost about $21.00. That way you can measure your breath and heartrate. You can measure these things while exercising and also at sitting. It is a good idea to keep tabs on these things when you have a serious lung disease. My oxygen level would drop so severely when I was doing aerobics, so needed a portable oxygen concentrator (oxygen machine).

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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!

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@shooei

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!

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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.

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@coco1970

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.

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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

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Hi, Sue. I have a pulse oximeter. I will make sure I take it with me next time I go out and will try to not go on such a long walk. It has been chilly here and the wind was blowing both days I went out so maybe that caused extra irritation. My readings, that I have measured have never been below 92. They did see some fluid in my ears and thought I might have some sort of an upper respiratory virus but it is like nothing I have experienced before. I am scheduled for a sleep study on Dec 1 and I think that was why they scheduled the appointment out so far. Although, originally I was supposed to have a virtual appointment with a nurse on Dec 15 and then after my CT scan results the appointment was scheduled in person with the doctor on the 9th so I am assuming they are extremely busy and he must have thought it could wait. I just feel so different than I did prior to the middle of October.

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@sueinmn

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

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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.

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@macjane

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.

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Hi, Jane. Were you fairly active before?

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@coco1970

Hi, Jane. Were you fairly active before?

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Yes but went through depression for 2 years.

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@coco1970

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.

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Echo1970, It sounds like you need to be seen sooner. What if it is pneumonia?

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@baz10

ling123–I, too have not heard of bronchiectasis being described in stages. I was diagnosed with it 5 years ago, but nothing has ever been said about it being in stages. Glad that you mentioned this! Thanks. Baz 10

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What are the stages can you share

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