1. < MAC & Bronchiectasis
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My sister has MAC & can't handle treatment. How can I help?

Posted by gina2023 @gina2023, Apr 30 11:32am

My sister was just diagnosed with MAC which is a fatal disease .There is a treatment,but her body can not handle it.I am so lost and don't know what I can do.I lost my husband 3 years ago and I feel this is deja vu.Does anyone have any suggestions?.Thank you in advance

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gina2023 | @gina2023 | May 3 2:01pm
In reply to @visions63 "Gina,I understand your feelings .I had NTM presenting with the a 3 cm cavitary lesion. They..." + (show)
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Gina,I understand your feelings .I had NTM presenting with the a 3 cm cavitary lesion. They wanted me on antibiotics for two years with a pick line doing some IVs. I could barely make two weeks and decided to consult a surgeon at NYU in Manhattan. I had a robotic lung Resection on March 2 and I am totally fine now. My pulmonologist did not suggest surgery, but I went forward in finding someone who would do it. This is all dependent on how your sister’s MAC presents. Please see if she may be a candidate for surgery and therefore not have to take antibiotics anymore .

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@visions63 Thanks for the response. Unfortunately, it's not just in 1 spot so they can't do any kind of surgery for it. Appreciate your feedbank

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legacygsh1 | @legacygsh1 | May 3 2:23pm
In reply to @visions63 "I would make a televisit with Dr Cerfolio and send him a copy of your CT..." + (show)
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I would make a televisit with Dr Cerfolio and send him a copy of your CT .
If he thinks it’s doable, I would make the trip to New York!… I don’t know if your surgeon’s is capable of performing this procedure or even if he does it, but the risks are very much lessened using robotic, minimally, invasive, lung wedge resection.

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@visions63 Thanks for your response. The surgeon did mention robotic, minimally invasive surgery. Was your cavity in the right or left upper lobe? How long was your hospital stay?

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visions63 | @visions63 | May 3 8:16pm
In reply to @legacygsh1 "@visions63 Thanks for your response. The surgeon did mention robotic, minimally invasive surgery. Was your cavity..." + (show)
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@visions63 Thanks for your response. The surgeon did mention robotic, minimally invasive surgery. Was your cavity in the right or left upper lobe? How long was your hospital stay?

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@legacygsh1 …Upper left .Hospital stay is typically overnight ,although I stated a bit longer .

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ellenblythe | @ellenblythe | May 4 3:11am
In reply to @visions63 "@ellenblythe ..oh forgot to mention,only 2 surgeons in NYC do this Robotic wedge lung resection .Surgery..." + (show)
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@ellenblythe ..oh forgot to mention,only 2 surgeons in NYC do this Robotic wedge lung resection .Surgery is also dependent on the location of your cavitary mass…mine was Apical, which means upper lung ,but a tele visit with Doc would be a starting place for you .

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@visions63 Thank you. Im not ready yet! I have strange episodes of hemoptisis from time to time, but my 02 is always 98-100, and I don’t cough too much. My main complaint is fatigue which is not necessarily attributed to MAC but FMS. How did you get to the point, or what were your symptoms when you decided to surgically remove the lesion? thx

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smc17 | @smc17 | May 4 6:26am

Info for all of you. I had been diagnosed with different bacterium sincec2019. I was not feeling well, fatigued etc, I saw a nodule in my left upper lobe that I advocated to have resected . No biopsy was more risky spreading if cancer. I knew it was cancer. Weight loss on top of other symptoms . I went and advocated to get to thorasic robotic surgeon. Best thing I did. Cancer removed , and mac along with the cancer gone . . So dont be afraid of lung resection. I get side effects to most meds. I did now grow PA not good but im dealing with my next steps to live with it. Stay positive. Advocate for yourself. You are special and doctors are so busy , its lije you are a number . Unless you have dealt with these bacterium yourself its hard to grasp the concept. You can live with these. Stay positive prayers coming

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visions63 | @visions63 | May 4 8:03am

My bacteria was not MAC either,(even worse )and my only symptom was weight loss .My Cavitary mass was 3 cm and was an Incidental finding on a chest x-ray.
The pulmonologist assigned to me wanted me to treat with antibiotics for 2 years before even thinking of surgery.i I am 79 years old and certainly tried 4 antibiotics and one I,V with a PIC line .Again ,I was so sick in 2 days that I sopped 4 days in .I called the surgeon office …first he said no …I begged him to look a images …he meet me ,looked at C.T and said said yes ….easy surgery. The pulmonologist was deadly against it, but I didn’t listen and do what I wanted to do and I still have no symptoms……quality of life is important to me …!!

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westcottkm3040 | @westcottkm3040 | May 4 8:50am
In reply to @legacygsh1 "@visions63 I was diagnosed with bronchiectasis with a 3 cm cavity left upper lobe a year..." + (show)
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@visions63 I was diagnosed with bronchiectasis with a 3 cm cavity left upper lobe a year ago. I've been on the big 3, currently started on clofazamine, and nebulized amikacin, along with azithromycin and ethambutul. Will get another CT in July. I've spoken with the surgeon and he stated that due to location, it is a very risky procedure (close to pulmonary artery, heart) with comorbidity at 30%. I'm uneasy about having the procedure. Glad to hear yours went well. I live in Oregon.

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@legacygsh1 I’m on all those. Did the amakacin. Caused some hearing loss. So stopped it. But on the other 4 still. Clofazimine seems to be helping. Been on it 4 months now.

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