Connect
← Return to Newly diagnosed and scared
Discussion
Comment receiving replies
Mary- How do you know your 'bacterial load was reduced"? Do you see it yourself on the paperwork test results...... and how is it stated? How do they show on the sputum test paperwork results your bacterial load...as X amount of colonies or like 1+???
Does your doctor specifically tell you that your bacterial load has reduced?
I ask because I am somewhat disappointed with the type of communication I got during my office visit(s). If it weren't for my being able to read the test results on MyChart I would not have known I had improvement as shown on the last C Scan. I was only told, while the doctor was looking at the C Scan, that I had a new area with plugging, lower left lobe. She did not tell me of any improvement(s) be it with the submitted sputum test results or the C Scan when I had my last visit. No mention of what is or is not happening with my bacterial load, just that I still have MAI.
We need all the encouragement we can get and knowing I was doing something right to have improvement showing on the results of the C Scan would have been nice to hear from the doctor verses my needed due diligence I had to do by pulling up the MyChart to find out at home, after my office, that I had improvement.
I can't imagine fully why she would not tell me also the positive, as she looked at the C Scan results. I wonder if she has reasons not to tell of the positive results along with the negative as she was observing it all. I guess there could be a dozen reasons. Oh well, I may have my expectations set to high also. Then again next time my question will be "Is there any improvement showing on the C Scan or with the sputum test results related to the bacterial load.?
Barbara
Replies to "Mary- How do you know your 'bacterial load was reduced"? Do you see it yourself on..."
Hi Barbara,
My ID doctor is very good so he did tell me about the improvements, however, I do read my results as soon as they are available from either Quest for the cultures or Advent Health for the CTs. It is always best, I think to look at the results and have questions ready before your next visit with the doctor. Quest results show a number like you mentioned. I went from 4+ to 1+. The CT, shows multiple cavities that have shrunk and no new ones. I always go to the same place so they add a comparison from the last scan.
We learn as we go so you are correct about knowing what to ask next time.
I am fortunate with my ID doc but ready to fire my pulmonologist. Although I had very good news, I do still have a collapsed upper left lobe which the pulmonologist doesn't even address. My ID doc is frustrated with him also for various reasons. He has referred me to IDC in Orlando because they have a team of doctors specializing in MAC and I could get in with a good pulmonologist. Also, he said that he is unable to prescribe clofazamine (must be a university dr) and he wants me on that if the next culture is still positive.
It is so important to have good doctors, familiar with treating MAC and willing to openly communicate with us.
Connect
Doctors have tunnel vision, and some do. I was frustrated with the information I was getting on my first visit, so I went with a list of questions and things I wanted the next time. As soon as I started asking him, he gave great answers, and I came away with enough information that I knew things were on the right track. As a last choice, if you continue not to like the communication you are getting from your doctor, find another one. You do not have to stay with them; if you upset them by leaving, they may look at how they practice. I have done this before. When my primary changed her practice, and I needed to find a new doctor, I spent a year going from one doctor to another until I found one I liked. Even with where I am, I can choose any doctor I want. This is for primary care. I could also do it in the pulmonologist group as well.