I have been too nervous to blog for the past few days. My creatinine, the measure of my kidney function, which had been beautiful at 1.11 (normal is 0.4 – 1.2) had gradually crept up to 1.20, 1.22, then and 1.29 yesterday. I was afraid that we were heading towards another episode of rejection. Today, fortunately my Cr. was down a bit to 1.24. The doctor told me that this is not what rejection looks like and I need to relax. There are many reasons the Cr could go up. The major one is probably my ProGraf (tacrolimus) level, which was high. This is one of the anti-rejection drugs and it actually causes kidney toxicity long term or at high levels. They aim for levels in the 6-8 range and mine have been hanging in the 7’s for the past few weeks, but yesterday, for some reason, it shot up to 13. Today it was still a bit high at 10. Other reasons besides rejection for an increased creatinine could include dehydration, a bladder infection, use of the antibiotic Bactrim, or just random variation. People have told me that the Cr will just normally bounce up and down for a while.
The problem is every bounce causes my heart to stop! I really really REALLY want this kidney to work for a long long time. Not being on dialysis is SUCH a good thing! Eating a normal diet is such a good thing! So I end up going through half the day holding my breath waiting for my lab results and the other half stressed for my results the next day. It is a fine line between wanting to have enough information so that we can act on a true problem quickly but not so much that normal random variation makes you crazy.
So what would we do had it been up again today? If it had been up a little bit, they probably would have done an ultrasound of the kidney looking for problems, a urine culture to look for infection, etc. Had it been really up, they would have done a biopsy. A biopsy means they use a gun-like device to shoot a retracting needle into the kidney and get a core sample of cells to see what is really going on in the kidney, i.e. is there evidence of rejection, and if so what kind – antibody mediated or cellular-immunity mediated. I had a biopsy of my native kidneys back in February, which is what told us that my kidneys were not going to recover. A biopsy of native kidneys is a bit sticky since your kidneys are on your back side under your ribs. It is a tough place to get to and if you bleed from the biopsy, which is a rare but not unheard of complication, you cannot easily compress the kidney to stop the bleeding.
A biopsy of a transplanted kidney is much easier though. Remember the kidney is right there in my right pelvis so it is easy to access and much easier to compress if it bleeds. It would have meant an overnight stay in the hospital however, and since I have family in town for the holidays, I am very glad we don’t have to do that right now! If I had evidence of rejection, treatment would depend on what type. Treatment options are many include more high dose steroids (my face and neck are quite fat enough thank you), more plasma exchange, or other options.
But for now, we are actually dropping my prednisone to 15 mg. Hopefully this will help with the fat face, the shakiness and the hunger. Next lab check is Friday. We will probably continue to check my labs twice per week for another 4-6 weeks or so since we need to monitor for recurrence of the HUS now that I have had my last dose of eculizumab.
Happy Thanksgiving everyone – there is much to be thankful for this year. Next Tuesday is the babies 1st birthday and marks the one-year anniversary of this journey.