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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.
Replies to "I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day..."
@tamela.....was there any consideration to a closed lobectomy? You poor dear! I Apache for you. Tdrell
@tamela I'm so sorry you have gone through what you have! I hope the pain stops soon and you get your life back. Do you mind sharing where you had your surgery. I went to National Jewish last year and they talked about surgery because of lesions in my lungs but I feel fine so said I will wait and see if I get reinfected (MAC eradicated for now). Best to you and I hope you feel better soon!
@tamela, Hi Tamela, and welcome to our group. Gosh, I am so sorry to hear about you needing surgery and still suffering with pain. I amsure I can speak for all of us in sending you a great big cyber hug. When you are feeling up to it, I'd like to know more about your circumstances with this disease. Surgery in less than a year after diagnosis sounds unusual. Do you think you had been sick with MAC for quite some time prior to March of 2017, and were just never properly diagnosed?
Thank you, Tamela, will do. Very glad you have someone to help with your care...imagine being by yourself...one blessing at least.
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Did they tell you what type of MAC Bacteria you had? That sounds like you have been through allot. Had you been coughing or had lung issues for some time before your were diagnosed? Are you from a prone areal of the country?