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New CT Scan shows MAI, Bronchietasis, Centrilobular Emphysema
MAC & Bronchiectasis | Last Active: Feb 19, 2022 | Replies (24)Comment receiving replies
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.
Replies to "Karissy, I'm sorry you have to deal with all this. I've had bronchiectasis and pseudomonas in..."
Wow we could be twins! My spouse just turned 70 and I’ll be 67 in a few weeks. I finally have energy that I’m going thru papers and being deliberate in labeling binders so the kids won’t overlook certain things. Our big project is organizing and finalizing estate planning. I need to learn to pay the bills! Some days I feel overwhelmed that I don’t do anything…. And then other times I’m a busy beaver!
I understand exactly how you feel. I also have talked about the same things with my husband. Sometimes the quality of life means more then the quantity. We all are different and deal with our diagnosis differently. I always said I have no interest in hanging around if someone has to take care of me . Do I want to die “Heck No”. I have family and grandkids too. However I know where I am headed whenever God calls me. This is not my home. This seems to be an illness that may be treatable but it sounds like it just keeps going. Once you get rid of one thing you get another. Its important to try and stay strong but like anything else that’s impossible all of the time. May God Bless you and I pray for a good outcome in your situation also. Thank you for replying to me.
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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