New CT Scan shows MAI, Bronchietasis, Centrilobular Emphysema

Hello karissy. I am sorry to hear that you got that diagnosis. I am in the same boat. I know what a blow it is to hear that kind of news. How are you handling it?

No, I'm not.

No I am not.

Hoping you can get some treatment for ur anxiety and depression. They seem to go together and then add lung issues….. my mom was on a low dose of generic Ativan. Dr suggested she bite a little corner of pill when she’d start to feel anxious…… so that it wouldn’t sedate her but take the edge off. My daughter does this too, esp since she’s had covid and they said she now has pulmonary fibrosis. She still hasn’t had initial appt with pulmonologist. She’s getting anxious as she’s feeling pressure from work to return. She is a dental hygienist. Is there a post covid pulmonary fibrosis group. She has already weaned herself off home 02, but wants to know how much of the lungs are involved, so what kind of activity can be expected.

Hi Terri Well not taking it very good. Right now leaning on my faith because that is the only thing I have. I thought being diagnosed with bronchietasis and MAI were bad but never saw the emphysema coming. Of course I get on the internet and read and it seems to have the worst fatal outcome. I know the doctor tells me to stay off the internet but that’s hard to do. Mentally my mind just keeps thinking the worst . I wish someone could tell me how the heck you can deal with this. I thought I was a really strong person but now I know differently. I know that God is in control. When you have been so healthy and never going to a doctor this just knocks you for a loop. I will admit I have had some bad thoughts but trying to stay grounded. Karissy

Karissy, I'm sorry you have to deal with all this. I've had bronchiectasis and pseudomonas in my lungs and sinuses for over 10 years. Two sinus surgeries helped some with that area. Now I've been diagnosed with MAC, which is a whole new ball game, as I'm sure you know. I've had numerous health issues over the years but this is the first one that comes with a survival rate. It felt like a punch in the gut.
Like you, my trust is in God and I know that He knows the number of my days. In addition to leaning on Him for grace and strength, I started thinking about what I want and need to do with whatever time I have left. Since my husband turned 70 three years ago (I'm 67), we started "cross-training." He's teaching me how to deal with stuff around the house, like changing the furnace filter, and I'm teaching him the things I usually handle, like paying the bills online. We did our wills, too. Now that I'm staring at MAC, I'm beginning to think about things like giving a special bracelet to my granddaughter or going through some files no one would understand like me. It's given me some concrete things to do that will have to be done someday by someone and checking things off my list has bolstered my mood. I'm not being fatalistic and I have every intention of fighting this disease, but I'm also trying to be realistic that I can make things easier on my kids later if I take care of some things. Not sure if that helps but may the Prince of Peace touch your heart and mind this day.

Karissy, I'm sorry you have to deal with all this. I've had bronchiectasis and pseudomonas in my lungs and sinuses for over 10 years. Two sinus surgeries helped some with that area. Now I've been diagnosed with MAC, which is a whole new ball game, as I'm sure you know. I've had numerous health issues over the years but this is the first one that comes with a survival rate. It felt like a punch in the gut.
Like you, my trust is in God and I know that He knows the number of my days. In addition to leaning on Him for grace and strength, I started thinking about what I want and need to do with whatever time I have left. Since my husband turned 70 three years ago (I'm 67), we started "cross-training." He's teaching me how to deal with stuff around the house, like changing the furnace filter, and I'm teaching him the things I usually handle, like paying the bills online. We did our wills, too. Now that I'm staring at MAC, I'm beginning to think about things like giving a special bracelet to my granddaughter or going through some files no one would understand like me. It's given me some concrete things to do that will have to be done someday by someone and checking things off my list has bolstered my mood. I'm not being fatalistic and I have every intention of fighting this disease, but I'm also trying to be realistic that I can make things easier on my kids later if I take care of some things. Not sure if that helps but may the Prince of Peace touch your heart and mind this day.

Hi, I'm not sure what you mean about "coming with a survival rate"? True, MAC is usually not cured, but it sure can be both treated and managed, as many people in this group can confirm.

I know a lot of the published info sounds dire, but my ID doc assures me that one can live for a long time with Bronchiectasis and the recurring infections.

Treatment is no fun, but it got me back on track to travel, hang with my kids and grands, volunteer and pursue my hobbies. I do them all more slowly, but I plan to hang around for a long time...

I do agree though, that as we get older it's a good idea to cross-train and clean up our affairs. But to me, that is part of simplifying and decluttering my life and home to make life simpler.

I say all of this while feeling a bit fragile tonight because I lost my quirky, indestructible 94 year old cousin today - from a fall, not any of her assorted age related ills. I don't have details yet, but I bet she was hurrying because she was late for one of her many activities! I plan to be just like her.

Do you have any unanswered questions about MAC treatment?
Sue

Karissy, I'm sorry you have to deal with all this. I've had bronchiectasis and pseudomonas in my lungs and sinuses for over 10 years. Two sinus surgeries helped some with that area. Now I've been diagnosed with MAC, which is a whole new ball game, as I'm sure you know. I've had numerous health issues over the years but this is the first one that comes with a survival rate. It felt like a punch in the gut.
Like you, my trust is in God and I know that He knows the number of my days. In addition to leaning on Him for grace and strength, I started thinking about what I want and need to do with whatever time I have left. Since my husband turned 70 three years ago (I'm 67), we started "cross-training." He's teaching me how to deal with stuff around the house, like changing the furnace filter, and I'm teaching him the things I usually handle, like paying the bills online. We did our wills, too. Now that I'm staring at MAC, I'm beginning to think about things like giving a special bracelet to my granddaughter or going through some files no one would understand like me. It's given me some concrete things to do that will have to be done someday by someone and checking things off my list has bolstered my mood. I'm not being fatalistic and I have every intention of fighting this disease, but I'm also trying to be realistic that I can make things easier on my kids later if I take care of some things. Not sure if that helps but may the Prince of Peace touch your heart and mind this day.

Hi, I'm not sure what you mean about "coming with a survival rate"? True, MAC is usually not cured, but it sure can be both treated and managed, as many people in this group can confirm.

I know a lot of the published info sounds dire, but my ID doc assures me that one can live for a long time with Bronchiectasis and the recurring infections.

Treatment is no fun, but it got me back on track to travel, hang with my kids and grands, volunteer and pursue my hobbies. I do them all more slowly, but I plan to hang around for a long time...

I do agree though, that as we get older it's a good idea to cross-train and clean up our affairs. But to me, that is part of simplifying and decluttering my life and home to make life simpler.

I say all of this while feeling a bit fragile tonight because I lost my quirky, indestructible 94 year old cousin today - from a fall, not any of her assorted age related ills. I don't have details yet, but I bet she was hurrying because she was late for one of her many activities! I plan to be just like her.

Do you have any unanswered questions about MAC treatment?
Sue