Does anyone know interpretation? Just got this on my portal from NJH

Posted by healthybon @healthybon, Jul 11, 2023

RPOB GENE SEQUENCING - IDENTIFICATION (NJH) - DetailsPrinter friendly page--New window will open
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rpoB Gene Sequencing Identification Mycobacterium avium
Mycobacterium avium

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@wabashacabin aka another Bon, I am sorry to hear that you are positive for MAI. It sounds like you have a good plan to keep it to a manageable level. For many that is all is needed, and I hope that remains the case for you. Thank you for your kind words and your expression of faith builds mine up. Thank you for it as well. God bless you, too.

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@mdf

Bon,

Yes, I do take antibiotics, I nebulize 7%, use the vest, and exercise. I agree, it can be overwhelming at times, and I went into it with my heals dug in a bit. I had difficulty coming to terms with the fact that my otherwise healthy body could be as sick as it is. I really did not want to take the antibiotics, but unfortunately I do have cavities in my lungs, and if I understand correctly the disease is throughout my lungs, so surgically removing the cavities is not an option because I would just be leaving diseased lungs behind. It seems that the disease has taken over my life in terms of time devoted to lessen the effects of it. In addition to MAC and bronchiectasis, I also have severe COPD. This is one of those times in life when I just had to put my big girl panties on and realize that life has indeed changed. I may or may not get rid of the MAC, but the bronchietasis and COPD are with me forever. My goal at this point is to slow down any progression of the damage of the two conditions, so hopefully, I can have a longer earthly forever. The only way I know to do that is with the tools that I have been given and choosing those I can possibly tolerate, trying all things but being willing to weigh the risk/benefit and stopping things where the risk is greater than the benefit. Unfortunately, that also means continuing things where the benefit is greater than the risk/adverse effects. There is at times difficulty is in knowing where that line is.

You asked how I cope. For me, I wouldn't be able to cope if I didn't have faith in a God who loves me unconditionally and knows exactly what is going on in my life. He has known it from the beginning, he knows how I got here, he knows where I am, and he knows my future, and he's got this. Ultimately, by his Son's stripes, I am healed. I do not know whether that healing will culminate while here on earth or when I am at home with him, but I know that I will once again be whole. Spending time in his word and in prayer are even more important than the tools that I have been given at NJH, here, and other chat boards. Without that time in his presence, I become afraid, because I tend to forget when I am not in communion with him that he created me, he knows me, he loves me, and he knows the plans he has for me. When I forget these things or they aren't in the forefront of my mind, then I feel alone and in a freefall with a safety net under me that has a hole, and I see the time in a small temporal picture rather than a big eternal picture. As you know, this same God has you in the palm of his hand. I highly recommend curling up in his arms of love, and letting him hold you as you share all of your fears with him. Our God who went to such great lengths to have a relationship with us is intensely interested in our well-being and tells us if we ask we will receive, if we seek we will find. I take him at his word on that. His word is true. I have found that what I receive and what I find is always far greater than what I was asking for and seeking in the first place.

Lifting you up in prayer on this journey. You are a beautiful and gifted soul, Bon, and a blessing to all of us as you share your heart.

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Thank you for your statements of faith. I live alone and God is my companion.. I do not know how people without that solid sn hor in Jesus name it through this and other long term diseases that change our lives. I have to ask for His Help several times a day. I don't have beautiful prayers. He understands my heart. Frequently I just say please help because I do not know what to do. I also recognize all the blessings and thank him through out the day

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@raney

Thank you for your statements of faith. I live alone and God is my companion.. I do not know how people without that solid sn hor in Jesus name it through this and other long term diseases that change our lives. I have to ask for His Help several times a day. I don't have beautiful prayers. He understands my heart. Frequently I just say please help because I do not know what to do. I also recognize all the blessings and thank him through out the day

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Love this: "I don't have beautiful prayers. He understands my heart." He IS so faithful and worthy of trust.

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