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NEED YOUR HELP! Just Diagnosed & Overwhelmed

Home Forums NTM Support Forum NEED YOUR HELP! Just Diagnosed & Overwhelmed

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  • #35035
    Daphne DanzyDaphne Danzy
    Participant

    HI all! I have a lengthy history of health issues. Most pertinent to my MAC diagnosis is I’m an Acute Myeloid Leukemia survivor. A Bone Marrow Transplant was the only way to save my Life which entailed wiping out all the bone marrow from my body then giving me a donor’s stem cells that grew new bone marrow. This means I had a brand new immune system that was actually someone else’s. For example I have to get specialized vaccinations just like a newborn! I’m a year & 4 months from the transplant. My immune system is still not up to par. The past year I’ve been hospitalized 5 times with pneumonia to varying severities caused by different bacterias, viruses & even a fungus. June 26th I was flown out, incubated & among all the tests a bronchoscopy was performed. Obviously I survived & was released to home. Yesterday I received a call from the Pulmonologist that a culture grew MAC. I’m under the care of my Transplant team & Infectious diseases at Nebraska Medicine which she wanted them to handle my case. Nebraska called & said MAC is a slow growing bacterium so on my scheduled appointment in a few weeks they’ll have it’s antibiotic susceptibility & commence my treatment plan then. I’ll also have a CT done. Aside from what I’ve learned on NIH’s site that’s all I know. My unexplained weight loss has now been answered! Fatigue, nausea, pain, shortness of breath, etc… I already have from other health issues. Please help me. What questions do I ask my Doctor? The side effects of treatment sound scary! Can they see how far progressed your MAC is? What precautions do I need to focus on? Is there anyway to figure out how you got it? My home is pretty dusty & used to be worse due to me being so very sick and not able to clean. Now I get 6 hours per week help cleaning thru a program & it’s helping to get my home under control. Just please give me any suggestions or advice you believe would be beneficial. What is the usual prognosis? I’m a positive person that’s how I’ve survived all that I have been thru but honestly I’m sick & tired of being sick & tired!

    #35036
    Karen PoveyKaren Povey
    Participant

    Hi Daphne, So sorry for all you are going through and I can certainly understand being sick of being sick and tired. We all wonder how we got MAC but there doesn’t seem to be an answer to that question. As for progression that is usually seen on a CTscan. I’ve had Mac since 2005 and have had treatment 4 times. Not every one has bad side effects and I was lucky not to have them too bad.

    Go up to the Resources heading on this page and you will find a subject You and your Dr. It has a list of questions to ask your dr.

    Educating yourself is a good idea and there is a lot of information here and some videos are on Youtube about NTM from conferences.

    Good luck on your journey. We are all here to help any way we can.

    Karen

    #51243
    Brenda Rigbybrendarigby
    Participant

    @Daphne Danzy, so sorry, we know that feeling of being overwhelmed. How are you getting along?

    #51998
    Anonymous
    Inactive

    @DaphneDanzy,

    I am newly diagnosed as of Thursday. I too was hospitalized with pneumonia and treated with a variety of antibiotics however I did not get better. It has taken 5 weeks for the MAC to grow out so I’m reading as much as I can to educate myself on this bacteria. I am likely going to participate in a clinical trial on how many antibiotics are needed to treat MAC. The medication is free and likely the test are free as well.

    I am hoping to learn how long it took to get relief after taking the antibiotics to treat MAC?

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