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I am just so sad that Pulmonologist let my lungs get the point they are before recommending treatment. I reacted to the Rifabutin so now for week I am on 2 of the 3 before he will replace it with something else. He doesn't talk much to me and it makes me feel very isolated. He did no baseline labs and said no when I asked for them. I am pretty frustrated.
Replies to "I am just so sad that Pulmonologist let my lungs get the point they are before..."
@jkiemen, Did you ask your dr why he would not have the baseline tests done? I can hear Katherine right now; INSIST on them! Can you get a different pulmonolgist? and do you have an infectious Disease dr also?
@heathert You are absolutely right. WE are our own BEST advocate in this. People, it is very important to Google this disease and learn ALL that you can. My doctor was impressed at the amount of knowledge that I had and was asking very important questions. I have found that when your doctor sees how involved and serious you are about getting your health back on track; they tend to work harder for you. You would be sursprised how many people go to the dr and have no interest in knowing exactly what is going on with them and how they can be a part of the team in the healing process. Many people just want to be given pills and go on their merry way. Knowlege is power!
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@jkiemen I know how you feel, I wasn't told much either by my dr, I dont think she knew alot, now she has been to a few conferences and is much better. I just did my own research which took a lot of time, time I guess my dr did not have time, so if you have time become a google dr, its a great help, and this site is a great help also. Alot of people cannot tolerate Rifabutin. You are your own best advocate, stick up for yourself with him. I hope you get sorted soon.