Mac with Bronchiectasis and collapsed middle lobe

Posted by sharisse68 @sharisse68, Nov 25, 2022

I was recently confirmed to have Mac lung disease and bronchiectasis in the middle lobe of my right lung which is also collapsed. I have done the percussion vest and the nebulizer with no sputum results. My infectious disease doctor is referring me to National Jewish Health in Denver, Colorado in hopes that they will be able to offer some advice or treatment as to doing some sort of medication or, my preferred choice is removing that collapsed lobe. The collapsed lobe from what I have been told is nothing but a harboring place for recurrent infections. So if I did the treatment and possibly killed the infection, it is very very possible and highly likely that the infection will come back. I am in my late 60s and don't want to wait several years for that to happen and then have to do the surgery. Does anyone have any experience or input on this?

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Sharisse — I have no experience with this, but am so sorry you are dealing with something so complex. What in the world made part of your lung collapse? I think you are probably making the right decision on surgery, but I would do as much research and get surgeons opinions as possible. You seem on top of it already — wishing you the best outcome!!!

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@cate123456

Sharisse — I have no experience with this, but am so sorry you are dealing with something so complex. What in the world made part of your lung collapse? I think you are probably making the right decision on surgery, but I would do as much research and get surgeons opinions as possible. You seem on top of it already — wishing you the best outcome!!!

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Thank you very much for your reply and your kind words. They think that I have had the collapsed lung for a very long time. I have had four bouts of pneumonia with the first at 4 years old which caused the bronchiectasis and damage which made the lung collapse. On my CT scan in May, the radiologist that read the scan commented that it served no respiratory purpose and was actually a harboring place for recurrent infections. My infectious disease doctor said that the National Jewish Health in Denver, Colorado is the world's leading respiratory foundation and is the only place that he would send me.

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I visited National two times this year; they are top notch. I think your strategy of having the treatment/surgery now versus later is a wise one.

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Hi, I have the very same problem. I’ve been dealing with this for 10yrs now. My next step is like you go to Denver. I’m 75. I also have the MAC in the lingual my left upper lobe is getting bad. I was just diagnosed with Tracheobronchomalacia last year. That’s caused from all the steroids I’ve taken through the years for MAC. It’s collapsed trachea, bronchial the flapper doesn’t always open. So you struggle to get air in. I can breath out but not in. I have to use a PEP connected to oxygen setting on 8 to force air in to open the flapper then I’m okay. There is nothing they can do for that. There is a surgery but it’s experimental and the success is not good. My doctor and myself say no. Some days I’m fine others I may use it 3-5 times. The cold air bothers me
I wish you the best success. Prayers be with you. Gloria.

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I've been a patient at NJH since 2011 and have always received exemplary care. I have cleared 5 strains of NTM with airway clearance and am now left with Kansasii and Bronchiectasis. I have tried and failed the Big 3 twice. On my last visit in June, my doctor recommended trying the Big 3 again as well as robotic removal of my deflated right middle lobe (where MAC is probably brewing and the cause of my hemoptysis) to be done in Denver. When I returned to my hometown, I sought the opinion of both an Infectious Disease specialist (re: the Big 3) and a pulmonologist (re: surgery). The ID doctor said my body would not tolerate the drugs so he wouldn't prescribe them. Two days later the pulmonologist said surgery would be an absolute last resort as the ramifications can be quite difficult to recover from. I am not on O2; I walk 3-4 miles a day; and I have a O2 of around 93-94. As a 70 year old woman, I am not – at least not at this point – willing to undergo surgery. I have researched this endlessly and have come to the conclusion that for ME surgery is not in my best interest. I've hesitated to share this but this website is about sharing our own experience. I am not in any way suggesting this is what anyone else should do. I'll be praying for you. This is a difficult road we travel.

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Thank you, it’s very helpful to hear from someone else who has the same medical conditions. I had a sister who passed away 5 years ago from MAC, Bronchietasis and Emphysema it was an awful death. She was on oxygen for about 4 years until she died. Very strange we both had the same diseases except I never had Emphysema I never smoked. I lived in California sense I was 20 and she lived in Ohio all her life which was 67. I go to Pulmonary Rehabilitation three times a week and work out 1 1/2 hr every day. I feel great after I get out of class. No surgery for me. Prayers for you and keep the walking up. I believe that helps us a lot. Gloria. 🙏🙏

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Thank you everyone for sharing your experience and offering your input. I love that each and every comment was gentle and kind. I want to share more of why my ID and I are hoping for the surgery. I have been fighting thyroid cancer for almost 2 years now. I had my first surgery to remove my thyroid and any cancerous lymph nodes, thankfully only 2 were cancerous. I then did a high dose of radioactive iodine treatment to kill any remaining thyroid tissue. We thought everything was good. This is normally a cancer that is easy to treat with a 98% cure rate. When I was diagnosed I was stage 4 but my doctor was still optimistic that we could kill it. Then, less than 6 months after my surgery and treatment it was back! This meant another surgery and "maybe" treatment, dependent on outcome of pathology. Well, pathology came back and they found it in the soft tissue of my neck. This now meant 6 weeks of radiation, 5 days a week! I had my last treatment on September 29, 2022. Neck radiation causes swelling of the esophagus which means it is difficult to swallow even water. It also causes lack of saliva so the mouth is very dry, and also taste changes (everything tastes either metallic or salty). Because of this, I have lost 30lbs since September. My surgeon said because my cancer has acted aggressively and fast growing, there is a very high chance that the cancer will come back within the next 5 years. They don't know when or where but feel that it will rear it's ugly head again. If I do treatment for the MAC, I know that some of the side effects are nausea, diarrhea, and weight loss. I do not want to feel bad for another 1-2 years and also cannot afford to lose any more weight. IF the cancer comes back, that means targeted drug therapy which is a type of oral chemo. I would HAVE to do treatment for the MAC at that point because of being immunocompromised. My thought, as well as my husband and my ID is to consult with NJH and push for the surgery which will give me time to fully heal and be rid of the MAC and bronchiectasis. We are still waiting for NJH to get back with my ID and possibly set-up a consult with me. Many prayers have been and are being said to get over this next hurdle.

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@busybeans

I've been a patient at NJH since 2011 and have always received exemplary care. I have cleared 5 strains of NTM with airway clearance and am now left with Kansasii and Bronchiectasis. I have tried and failed the Big 3 twice. On my last visit in June, my doctor recommended trying the Big 3 again as well as robotic removal of my deflated right middle lobe (where MAC is probably brewing and the cause of my hemoptysis) to be done in Denver. When I returned to my hometown, I sought the opinion of both an Infectious Disease specialist (re: the Big 3) and a pulmonologist (re: surgery). The ID doctor said my body would not tolerate the drugs so he wouldn't prescribe them. Two days later the pulmonologist said surgery would be an absolute last resort as the ramifications can be quite difficult to recover from. I am not on O2; I walk 3-4 miles a day; and I have a O2 of around 93-94. As a 70 year old woman, I am not – at least not at this point – willing to undergo surgery. I have researched this endlessly and have come to the conclusion that for ME surgery is not in my best interest. I've hesitated to share this but this website is about sharing our own experience. I am not in any way suggesting this is what anyone else should do. I'll be praying for you. This is a difficult road we travel.

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Looking into a surgical procedure to deal with my MAC. Wondering if anyone knows one that could just clean out my lungs from the massive amount of deep congestion activity. I'm open to all ideas!

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Hello, Bronchoscospy. You’re with the best medical group for MAC. NJH is the best for MAC. Do what ever they are suggesting.

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@sharisse68

Thank you everyone for sharing your experience and offering your input. I love that each and every comment was gentle and kind. I want to share more of why my ID and I are hoping for the surgery. I have been fighting thyroid cancer for almost 2 years now. I had my first surgery to remove my thyroid and any cancerous lymph nodes, thankfully only 2 were cancerous. I then did a high dose of radioactive iodine treatment to kill any remaining thyroid tissue. We thought everything was good. This is normally a cancer that is easy to treat with a 98% cure rate. When I was diagnosed I was stage 4 but my doctor was still optimistic that we could kill it. Then, less than 6 months after my surgery and treatment it was back! This meant another surgery and "maybe" treatment, dependent on outcome of pathology. Well, pathology came back and they found it in the soft tissue of my neck. This now meant 6 weeks of radiation, 5 days a week! I had my last treatment on September 29, 2022. Neck radiation causes swelling of the esophagus which means it is difficult to swallow even water. It also causes lack of saliva so the mouth is very dry, and also taste changes (everything tastes either metallic or salty). Because of this, I have lost 30lbs since September. My surgeon said because my cancer has acted aggressively and fast growing, there is a very high chance that the cancer will come back within the next 5 years. They don't know when or where but feel that it will rear it's ugly head again. If I do treatment for the MAC, I know that some of the side effects are nausea, diarrhea, and weight loss. I do not want to feel bad for another 1-2 years and also cannot afford to lose any more weight. IF the cancer comes back, that means targeted drug therapy which is a type of oral chemo. I would HAVE to do treatment for the MAC at that point because of being immunocompromised. My thought, as well as my husband and my ID is to consult with NJH and push for the surgery which will give me time to fully heal and be rid of the MAC and bronchiectasis. We are still waiting for NJH to get back with my ID and possibly set-up a consult with me. Many prayers have been and are being said to get over this next hurdle.

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If you don’t hear from NJH. Definitely call to f/u. They don’t always. Good luck. I will be praying for you!

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