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Looking for advice for my mother about NTM

Home Forums NTM Support Forum Looking for advice for my mother about NTM

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    Joshua UnderwoodJoshua Underwood
    Participant

    I am very worried about my mother’s condition, and I need some help and advice. Thank you all so much for taking the time to read this.

    In the 90’s, my mother (~50) began having chronic lung issues which worsened for over a year. Eventually, she developed tightness and pain around her chest, which lead her to see a very bright orthopedic surgeon because her doctor suggested the pain was possibly from a pulled muscle or something similar. The orthopedic surgeon was from our church, and had a hunch that it was actually from fluid around her heart. He confirmed this with a chest CT just a week before she wound up in the hospital due to her worsening condition. Even the doctors at the hospital said she was only a few days away from dying, but they saved her life by draining the fluid and treating her briefly for a NTM infection with an IV antibiotic for a few days (which was probably pretty standard practice then). Testing for the NTM was literally a last minute Hail Mary by the pathologist, as NTM was believed to be extremely rare at the time.
    My mother has struggled with COPD for the last 5-10 years. Her father also had COPD, and he died due to the stress put on his body due to dealing with breathing problems for 20-30 years.
    Her condition has slowly worsened, and she also developed recurring fungal infections over the last year that were likely due to standard antibiotics and steroids which she would take nearly every month or two for possible lung infections and breathing difficulties.
    Recently, her condition has worsened to the point where her pulmonologist is recommending Lung Volume Reduction surgery or Endobronchial Valve procedure.
    I do a lot of work for labs and healthcare as a Health Informatics Consultant, and I have always had an interest in healthcare. My family and friends have often asked me to look into certain serious issues because I tend to be well informed, and I’ve had some luck in the past with overcoming diagnostic or treatment difficulties. In this case, my mother asked me for advice on the surgery and her condition.
    I told her to make sure that they had looked into and tested for NTM because I know my mother never received appropriate treatment, and that is in addition to the fact that she is a slender Caucasian women with weight loss, COPD, chest pain, fatigue, and also appears to have infections often due to low grade fevers and other symptoms.

    I had honestly assumed, up until last week, that the pulmonologist had looked into NTM as possibly being related to my mom’s slowly worsening condition. I was, of course, wrong about this. I asked her to mention it to the pulmonologist, since it seems like testing for it would be a pretty reasonable thing to do before deciding to have surgery (even if she still needed the surgery, for that matter).

    The pulmonologist told my mother today that she didn’t need to be tested, and he apparently made it sound as if NTM wasn’t a real possibility (just like the 90’s when they said it was super rare if you didn’t have HIV).
    Now this next part is why I’m taking the time to write to you about this.

    The pulmonologist told my mother that she wouldn’t need a culture anyway, since NTM is diagnosed and confirmed by standard x-rays. She has not had a CT scan, but she has had chest x-rays done in his office. So he blew it off as something not really worth looking into, and she was left with the impression that it would’ve been obvious from regular chest x-rays. Now she isn’t sure whether it is worth bothering with a second opinion, since she (like many people) is feeling vulnerable about everything right now. She wants to trust her doctor fully, which I know many of you will understand why that’s so important before surgery.

    My wife and I have tried communicating some of the facts regarding this issue with her, but she is really on the line right now concerning whether to even bring it up to any doctor again.

    My mom is a very loving and compassionate person who loves people. She loves talking with everyone, and she always seems to wind up having conversations with strangers every time she’s at the grocery store. In other words, she is a people person. She tends to listen to personal stories and experiences more than anything else, which is why I am writing this now. She is very open to talking or reading about this, and I want to make sure that she gets the best care possible. I’m obviously very concerned about her health, but I’m not a doctor and I may be wrong about whether or not this is something that she should possibly have checked out. Furthermore, I want my mom to feel confident about any decision she makes, and that’s why I’m asking for any opinions, experiences, or other helpful advice.

    I would rather ask and be wrong, than to wonder later on if I was wrong not to ask.

    Thank you for your time and consideration reading/responding to this, and I would greatly appreciate any help or advice on this matter.

    #225800
    Amy Leitmanadmin2
    Keymaster

    Hi Joshua,

    I’d be happy to talk with you further about this. Please feel free to email me directly at amy@ntminfo.org.

    Best regards,
    Amy Leitman
    Director of Policy & Research
    NTM Info & Research

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