Wednesday, May 04, 2011

Health Update - "Roid-Weird"

Enough people read and expressed interest in the last blog post that I figured I'd give a new update.  Because a lot happened after I wrote that last one.  For one, I had to go back to the hospital for another 8-day stay.  This time, I was experiencing shortness of breath because there was fluid around my lung and it couldn't expand and I was basically suffocating.  So, I called an ambulance and was brought back in.  After more tests, including a CT scan that is still affecting my kidneys because of the dye they inject, and probably a record number of chest x-rays, it was determined that it wasn't an infection and the fluid was caused by the Wegener's.  At least they didn't collapse it this time.

They did, however, insert another chest tube (even more painful than the first one) and drain about 3 liters of fluid from in and around my lung.  That's a lot of crap to be in there.

The good news first is that I have finished my treatments of rituxan (the chemo-drug that is supposed to prevent remission) for at least six months.  Unfortunately, since they haven't been using this treatment for Wegener's that long, the doctors really aren't sure of what any long-term effects may be.  Still, they have said that you don't start seeing results until you finish the treatments, so hopefully now we will see something.  The other piece of good news is that my lung appears "stable," which at least isn't worse, as my doctor originally thought when looking at my latest chest x-ray (He didn't have access to the hospital ones.  Don't you love the way this system works?)  There are still some pockets of fluid around my lung that my body is supposed to handle, but it will take some time, and that still makes me a little short of breath when walking up stairs or any real distance.  It's definitely something we're keeping an eye on.

The rest of the news is that I am still very anemic, which also leads to being rather weak.  My blood cell count is very close to the level where they would like to schedule a transfusion, which I will consider if they do not go up (I have to go in for more and more bloodwork to see if there is any change.)  However, there is also concern that I am bleeding *somewhere*, so a transfusion might only temporarily solve the problem.  Because we don't know why the blood count continues to be low, they also want me to schedule a colonoscopy to see if I am bleeding in my intestine, which I am certainly not looking forward to.

Beyond all that, I am still on a very high dose of steroids, which does all kinds of crazy things to me (I've started calling it "roid-weird."  Like roid-rage, but different), and my kidneys are still being affected.  And there is some concern over how the hole from the chest tube is healing (or not healing).  So, the bottom line is I still have a long way to go here.  A lot of uncertainty.  Hopefully, it will all come together as we go along, and hopefully the tapering off of the steroids will be the first step.  At this point, I'm still lounging around the apartment, looking bloated and going to a seemingly endless line of doctor's appointments.  I guess it could be worse, though.  At least I am home, hopefully for awhile this time. 

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