In shock after MAC diagnosis

@dsilva Hi, who do you see in NY? I’ve been seeing Dr. Kamelhar assoc with NYU since 2016. That has been his approach also. I have nodules that come and go, and some shortness of breath, but no other symptoms. I also have bronchiectasis. My regular pulmonary Dr has also agreed about the wait and see approach. I have learned that even if you go on the antibiotics and get rid of it you can still become reinfected and might need to be treated again. I think that’s why they suggest waiting.
Gina K

@dsilva I have a similar situation as @ginak in that my pulmonologist didn't think drug treatment would have better outcome than wait and see option because the side effects of the drugs might do more harm than good to my body and the drug treatment would not guarantee success once and for all. Even if the treatment did manage to get rid of MAC at first, there would still be possibility that it might re-occur. I was diagnosed with MAC 5 years ago and have had bronchiectasis for many years prior to that point. I did not have any symptoms that others described, such as weight loss, fatigue, shortness of breath, etc. at the time of diagnosis except coughing up large amount of blood once out of the blue. He suggested that I schedule visits with him, first every 6 months then once a year, and make decisions at each visit whether I should go through treatment based on my lung conditions at the time of the visit. So far my lungs have not deteriorated at all and I continue to live a normal and active life without taking any medication.

@kp5450121 Hello Karen. So sorry that you are dealing with such serious lung issues. There is nothing worse than not being able to breathe. I saw my mother turn blue many times during her battle with Alpha-1 deficiency. I too was almost a candidate for a lung transplant back in 2013. Fortunately, my case was a matter of clearing out heavy infection from my air sacs. I'd like to try to guide you to to some good help if possible. I do know of a man who received a double lung transplant in Ca. He was turned down by everybody. That was over ten yrs ago, and he is still alive and well today. I will try to contact him and find out where exactly he went. There are a few 'great' lung transplant hospitals I know of. Duke Medical University in S.C, and one in San Francisco. (Will get back to you on that one) I am not saying you need a lung transplant, but at least the medical instituions that do great lung transplants would have great pulmonologists. What part of the country do you live in?

@sylvermoon8 It seems that many of us on this site with mac; have been avid gardeners. Hmmm.....

@kp5450121 Hi. May I ask why you were denied transplantation at Mayo? I wasn't denied, but put on the back burner, so to speak. They said I was on the cusp of needing one, but got the green light should I go downhill. I am aware of factors that would cause them to say no. One biggy is weight. You cannot be overweight. Old age, and other circumstancial diseases are also factors along with mental health. You have to be of sound mind and have positive attitude because it is a real fight to survive a lung transplant.

baz

@ling123 @windwalker My story is very similar to ling123 symptom wise-except my ID doc put me on the big 3-I did not tolerate rifampin which the cultures showed were specific to my MAC. After a year on the other two, cultures still positive. I cough some, but work full time, exercise daily, and can hike in the mountains! I’m going back at the end of the month to ID- I will not go back on the meds at this time.
And yes-I’m an avid gardener- now raising Monarch 🦋!

@rmason I'm glad to hear that you are leading an active and interesting life despite being tested positive for MAC. From what I have learned, people can be positive for MAC but can still live a normal life and not have symptoms without being treated with antibiotics. MAC are such ubiquitous bacteria that it is very hard to live in an environment where they don't exist. The bad news is that for those who have other health issues that cause their immune system to run down, MAC infection will make their conditions worse. If you are otherwise healthy, like myself, the important thing to do is to be vigilant and work with your doctors to make sure that your lungs stay in good shape and there are no other medical problems that may affect your immune system and your general health. Hope everything goes well with you and the monarchs are thrilling under your loving care.

Now, they want me to go on clofzimine. Has anybody been on this? The side effects are frightening!

My cousin's husband had a double lung transplant at Barnes in St. Louis. He is doing great and it's been about 5 years. Unfortunately, his wife died of colon cancer because she ignored all the signs while taking care of him.