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More complications and saline/neb

MAC & Bronchiectasis | Last Active: Mar 22 10:14am | Replies (5)

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@doberdoo

Thank you for your response Lilliana. I live in Indiana so it is usually over an hour and a half to get to the downtown campus. I started out in their Lung Nodule Clinic. Dr. Sean Smith did a bronchoscope which cultured MAC. Bronchiectasis has not been confirmed. I do like Dr, Smith but he is an Interventional Pulmonologist and therefore cannot treat. He told me to schedule with a regular pulmonologist and ID specialist, who also have to consult with my cardiologist due to a severe heart condition which prohibits me from taking the Big3. I kid you not, it took over 3 WEEKS to get the Pulmonary Clinic to call me back JUST to schedule an appointment with ANY pulmonologist. I had to go to the hospital's Patient Advocate to intervene. I am working with three very incompetent doctors and don't know what to do next. And no, their nurses are just as bad. They do not respond. One that did screwed up big time. She showed a CT scan from months ago to the doctor for goodness sakes. Do I ask for new doctors there? I am being left to my own devices with no contact or credible help from them. The nurse forwarding a very old CT is an example. I am trying to keep myself alive as long as I can but their Nodule Clinic is deplorable. I guess I will have to get Patient Advocacy Involved again.

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Replies to "Thank you for your response Lilliana. I live in Indiana so it is usually over an..."

I am terribly sorry you are going through this as am I. This morning, as I brace to write a very long letter to the ombudsman at Kaiser Permanente in San Rafael, CA, I was reminded that I need to stay calm in the midst of the ordeal ahead with intentional stress release, meditation, deep breathing, bodily relaxation techniques and also prayer in my case. It is so demoralizing when doctors don’t do their job, but we need to stay strong to maintain clarity of mind and emotional health as we navigate ignorance that directly impacts our disease progression. Know that you are not alone, and that advocating for oneself requires a foundation of equanimity. And bravery that comes from accessing that reservoir of well-being within us and the support of kind and generous people like our community here.