Kidney Pie

Prednisone is over now.  I did the last decrease to nothing on Friday, so that I would have the weekend to suffer the effects, and so that if anything went really wrong it would be there for my Monday appointment.  I had some pretty bad joint and muscle pain, and crippling fatigue for most of the weekend. 

The pain was pretty much gone by Monday, but the fatigue is still there. The fatigue is probably caused by lack of eating as the taste buds are gone again along with the desire to eat.

Got up early for my Monday appointment, and the commute was crazy light.  The Port Man bridge was only backed up to Johnson Hill - like a holiday or early Sunday morning.  It was weird.  I got in about an hour before my appointment.  It gave me an opportunity to go to the special pharmacy to pick up some more Cyclosporin.

Got in to my appointment at LBMT, they took my blood, and since there were no fluids scheduled, the nurse was wondering if I wanted to head off right away.  We decided it would be better to hang around and wait for the results, just in case.

Hung around for the results, hemoglobin was low (88), but not enough for a transfusion.  Since everything looked status quo otherwise, I was let go.

I packed up, headed out, got about 10 minutes from the hospital and got a call.  My creatine levels were crazy high.  My kidneys are angry about something.

In short, they wanted me back for fluids, for the next three days, and then again on Friday to see how everything was doing.

Damn.  

Fortunately I am well versed in the self administration of saline, so I convinced them to let me take the saline supply home and take care of it myself.  So, I need to flush my system for the few days, and I am back in on Friday morning for another appointment.  Another $50 in gas and parking.

Headed home, and still made it back at a reasonable time just after 1pm, fluids in tow.  Got into bed, and around 8pm, got out.

My Cyclosporin has now been cut down to 50mg twice a day.  We'll be watching for GVHD to appear.

So, that's about it.  Feel like crap, in bed or on the couch most of the time.  Forcing myself to eat so that I have enough food to take the drugs, and hopefully not waste away too much.  One cold is finished, but I guess I have another new one.

Comments

Admin said…
Awesome news about the prednisone. David had to stop tapering because the GVHD hits him hard every time he tries to go down a dose. We tried to celebrate all the colds that came around day 100 - time to let the new immune system get some practice. Hang in there. It's a road so much longer than you think, but the farther you go, the more 'normal life' slowly creeps in.
2/23/2011 9:52 PM
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