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In shock after MAC diagnosis

MAC & Bronchiectasis | Last Active: Nov 1, 2022 | Replies (136)

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@windwalker

@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?

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Replies to "@kp5450121 Hello Karen. So sorry that you are dealing with such serious lung issues. There is..."

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.

@kp5450121 Hi Karen. How are you doing today? I am sorry for the delay in getting back to you, but I have been battling the flu or some sort of bug for the past week. The good lung transplant place in Ca., is at UCSF Medical. They have exceptional long term survival rates of lung transplantees. I am still trying to connect with a man in Ca to find out exactly where he went for his. He was initially turned down by just about all hospitals to do his transplant because he would not change his lifestyle (heavy drinking) One place did agree to do it for him, and he is still doing good after 13 yrs. I do not know him personally: he is a brother to a friend of mine up in N.Y. Have you made any appointments since your last post?