(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@jasmine321 and @spencersok, We can all commiserate with Spencersok's wife. But, I want to remind everybody so that you all do NOT get discouraged; these medications do help some people, and also, his wife has the added challenge of being on antirejection drugs. It is not uncommon for transplantees to get mac because the antirejection meds lowers your immune system a great deal. Spencersok, please tell your wife that I am praying for her also, and that she has this Connect community pulling for her. I bet it hasn't been easy for you either as her caregiver. It is tough to watch someone you love struggle so hard with their health. Hugs to you both. X

Thanks Irene5! Family means a lot to me and I know it the hardest thing to do. I have 4 daughters and I son and we are all 10 minutes away from each other. The good thing is we’re there for each and I know life would be empty without them. Thank you for sharing your experience it means a lot. Hugs Rita

I hope I'm not butting into a conversation that I shouldn't. I too, have MAC. This is my second go-round. I was first diagnosed in June of 2017. I took the standard 3 antibiotics for a period of 12 months and was told I was cured. When I went in for my yearly check up, my Dr. ordered a CT and it showed up in the scan. I had a Alveola Lavage and will see my dr. on the 20th for formal diagnosis. From what I'm reading, it doesn't sound very promising. This second time is so different than from the first. I can really feel it this time. I'm so sorry you all are having to go thru this. If anyone has any suggestions, I would love to hear them.
Again, this is my first attempt to join this group and I'm not sure of how to get started, and I'm sorry if I shouldn't have responded here.
ktkarenst

@jasmine321 and @irene5 I don't think my wife will entertain the thought of surgery. She is 72 years old and a recipient of a Liver Transplant. She taking antirejection meds now to preclude the liver rejection, yes after 17 years. As we all goes the suffering, there is somethings that drugs will not cure, but for those who believe, we pray that God will fill the "gap" through his healing power. Many don't realize the day we were born, we begun to die, but the last breathe is in God hand and timing. So my suggestion is that we live while we are living and death will take care of itself.

The Bible, not meaning to offend anyone, tells us that we are to be of good courage: "So we are always of good courage. We know that while we are at home in the body we are away from the Lord, for we walk by faith, not by sight. Yes, we are of good courage, and we would rather be away from the body and at home with the Lord."

Even though my wife is the one who is physically suffering from this monster of disease, as a supporter of her needs, I suffer too. We all wonder how we should respond to the pain and suffering? After all these years my wife been ailing, that not an easy answer, we will face the situation or circumstance differently, but we have one thing in common; The God that heals. One would wondered if he is the God that heals, then why are you healed. That answer is just as complicated as the other. but life is about timing. Yet while we pray, we must attend to a critical distinction; although God can heal us, we must never presume that he must. You see, death is the consequence of the fall. "For we all have sinned and fall short of the Glory of God." Therefore, "For the wages of sin is death, but the gift of God is eternal life in Christ Jesus Our Lord.". Death itself will overtake us all, and most commonly recruits illness as it vehicle. to bring us to that point. When Christ returns, no disease will blot God's creation, but for now, we wait and groan as our bodies wither.

We would like to percieve our healing to be for the greater good, but God's wisdom surpasses even the most impressive reaches of our understanding. We cannot bend God's will to resemble that of our own. May I leave you with this thoought. If we set our eyes only on a cure, rther than on the reality of our physical mortality, we ay chase after treatments that not only fail to save us, but which also rob us of our capacties to think, communicate, and pray in our final days. On other thing we forget. We made ourselves not and if healing is not within God's will, we will need fortuide, peace, and discernment to endure. and if healing doen't come, a single-minded focus on healing strands ourselves and those we love with unsettling doubts about the validity of prayer and our faith.

No matter the belief level of whoever might read this, I will continue to pray; we are to pray without ceasing. As I pen this note to all right now, no matter which side of the world you reside, you see, God is watching over us. He said it this way, "Get some rest. It's in my hands and I am able to do immeasurably more than you can ever imagine."

My Dr. hasn't mentioned bronchiectasis yet. I live in Fort Smith, Ar. and I'm seeing the only lung dr. here under my insurance plan. When I go back to see him on the 20th, I should know more. If you don't mind, I will read your treatment plan and give it to my dr.

@ktkarenst, Be sure to ask him about whether or not you have bronchiectasis, and if maybe you have GERD or acid reflux. These are two common culprits for attracting mac disease. Your CT scan is what can reveal bronchiectasis. Please take the time to read over older posts as there is a lot of info in our conversations. Check out the Discussion board too, there are pages and pages of helpful topics concerning this disease. It is located on the main Mac and Bronchiectasis home page. Let me know if you need help navigating this site, ok?

@jasmine321 and @spencersok, We can all commiserate with Spencersok's wife. But, I want to remind everybody so that you all do NOT get discouraged; these medications do help some people, and also, his wife has the added challenge of being on antirejection drugs. It is not uncommon for transplantees to get mac because the antirejection meds lowers your immune system a great deal. Spencersok, please tell your wife that I am praying for her also, and that she has this Connect community pulling for her. I bet it hasn't been easy for you either as her caregiver. It is tough to watch someone you love struggle so hard with their health. Hugs to you both. X

I do have Gerd and have been taking meds for that for years. I may be asking you for help. I am slow at getting around in here but I'm getting more used to it. Thank you so much. I feel better just knowing I'm not alone. Thanks again, and have a good evening.

@windwalker Yes, Terri that is so true about MAC and transplants and anti rejection drugs. Before I retired I had a little girl in my class with two transplants (kidney and liver). Most of us on this site are lucky to be able to use hand sanitizer before we eat at a restaurant. Transplant patients can’t use it as it can damage the transplants apparently. That was new info for me! The doctors at Boston Children’s Hospital told the little girl’s mom that so her IA stopped having her use it.