The B Word

Sorry I've been bad about updating. There has been a lot going on that has taken a great deal of my brain space.

It's been a rough six weeks since I returned from vacation. My breathing never returned to normal and I feel really run down. At my March infusion, I discussed this with the doctor and we agreed that I should have a high-res CT scan. That scan turned up some reasons for my feeling crummy that I was not even slightly prepared for...

I have the first spots of bronchiectasis in my lungs. That's the B word. The word which scares me more than I can fully express. I know many people who have it and, just from seeing them, I have an idea of where this leads. The saddest part is that my infections have been well-controlled and reduced by proper IG replacement, so there's not any reason I should be getting this. I should be fine. My lungs should not be getting damaged. Yet, here we are. Why? Who knows!?!?! My doctors certainly haven't shared anything enlightening.

Now I must go to a pulmonologist to get further evaluation, to include investigating the "opacity" in my lung... aka what could be a fungal ball. I've had fungus and yuck in there before, and I've had a bronchoscopy before, but this time I'm really frightened and tempted to just ignore it as long as possible. As it turns out, the medical establishment is with me on that. I called to try to get a doctor's appointment with the pulmonology group I (and my PCP and my rheum) think is most qualified to treat me. I had a particular doctor in mind, so I called. They didn't want to get me in until May 1, and not with the doctor I wanted to see....

Enter my beloved primary medical group. She talked to them and let them know my situation... They will be calling to schedule me ASAP. I feel much better since she seems to be taking me seriously and doing her best to help me as she can.

The immunologist, on the other hand, is making me feel like I'm crazy right now. I know that's not the intent, but that's the result. Telling me that I just "didn't get along" with the last pulmonologist makes me realize that he really wasn't paying attention when I told him what happened and when I cried in his office. I definitely will not be using his recommendation of another "nice guy" pulmonologist. Especially since my primary cautioned me against using that doctor specifically and the rheumatologist cautioned me against his practice generally.

I hope to get in some time in the next week or two so I can find out what is going on and get whatever testing needs to be done. I just want to feel better.