I saw my pulmonologist yesterday. I have been SUPER GOOD AND COMPLIANT with my airway clearance, but I'm still not feeling great. The pulmo thus decided that it is time for me to have a bronchoscopy. I'm not thrilled with the prospect, but it makes sense given my situation. We want to see what's in there and what the best approach will be going forward.
I go in on Thursday morning to have my lungs scoped and basically washed out. I've taken to calling the lavage portion a spa appointment for my lungs. Friends tell me this can be pretty miserable feeling, but that it can help you on the road to recovery and to feeling better in the long run. I am hopeful it is that way with me, so my lungs can get rid of the gunk in them and the airway clearance can help keep them clear.
Not that I really want to have a bronchoscopy or lavage or any of this. Sometimes, we just don't get a choice. Sometimes, we just keep moving down the path because we're supposed to and because, in the end, it's what is best for us. Still, though. This stinks. Another thing to add to my list of surgical procedures. ARGH.
I am quite thankful to have a treatment team that I trust. This is one of those times that I have to remind myself of that. I would rather not need them, but I'm so glad I have them when I do.
Tuesday, April 30, 2013
Thursday, April 11, 2013
Say Hello to My Little Friend...
It's all fine and good... except I got zero training with it. Nothing. I did get an instruction sheet for how to clean it, so I guess I should be grateful for that? Sigh... It's always something. I had to track this sucker down for 2 days trying to make sure I had proper authorization or whatever I needed... and now I get to figure out how to use the darn thing.
Monday, April 8, 2013
65 Roses
No, I don't have Cystic Fibrosis. But! I do get to pretend like I have it and do their airway clearance method with hypertonic saline!
Ok, I'm not necessarily thrilled with adding a 30 minute breathing routine to my day, and I can't exactly say that I'm hopeful at this point. Frankly, I'm not. I feel kind of dejected and hopeless about owning a piece of DURABLE MEDICAL EQUIPMENT. There are reasons I am not on sub-q, and not having medical crap around is one of them. I have to figure out how to maintain sanity while feeling like a "patient" every day.
So we will just focus on the positive aspects of what is going on, leaving my mental health state out of it for the time being. I will sort that out eventually.... BUT! The good news is that this doctor is both aggressive and conservative in very smart ways. We're waiting out the bronchoscopy for another 2 weeks to see if this regimen helps my lungs clear the ball of junk. She thinks it is just mucus at this point, rather than a fungal ball. Also, the extent of the bronchiectasis is limited to the part of my lung where I feel it. That is both disturbing and oddly reassuring. I was hoping that getting rid of the mucus plug would help my lung feel better... but who knows now?
The hypertonic saline is described pretty well by the Cystic Fibrosis Foundation here. Maybe it won't be totally unpleasant or will help me unwind. I kind of doubt it, but I have to do it anyway.
Ok, I'm not necessarily thrilled with adding a 30 minute breathing routine to my day, and I can't exactly say that I'm hopeful at this point. Frankly, I'm not. I feel kind of dejected and hopeless about owning a piece of DURABLE MEDICAL EQUIPMENT. There are reasons I am not on sub-q, and not having medical crap around is one of them. I have to figure out how to maintain sanity while feeling like a "patient" every day.
So we will just focus on the positive aspects of what is going on, leaving my mental health state out of it for the time being. I will sort that out eventually.... BUT! The good news is that this doctor is both aggressive and conservative in very smart ways. We're waiting out the bronchoscopy for another 2 weeks to see if this regimen helps my lungs clear the ball of junk. She thinks it is just mucus at this point, rather than a fungal ball. Also, the extent of the bronchiectasis is limited to the part of my lung where I feel it. That is both disturbing and oddly reassuring. I was hoping that getting rid of the mucus plug would help my lung feel better... but who knows now?
The hypertonic saline is described pretty well by the Cystic Fibrosis Foundation here. Maybe it won't be totally unpleasant or will help me unwind. I kind of doubt it, but I have to do it anyway.
Wednesday, April 3, 2013
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.
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.
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