We are heading back to Mayo Clinic this Tuesday evening for a followup with the dr concerning the pyroderma gangrenosum(crohn's of the skin, called PG). Joy's appointment for labs is at 8am Wed morning, so we are driving on Tuesday. We just can't handle a middle of the night road trip any more.
The most important thing concerning this trip is Joy's kidney function. The medicine (Cyclosporine)that controls the PG is highly damaging to the kidney's and can cause kidney failure. She has been on the borderline of that a couple times with this med since March. During her first round of surgeries in 09, she had 2 acute kidney failures due to severe dehydration and a reaction to a medication. Her kidneys returned to normal function in a few weeks each time without the aid of dialysis. But each time this happens it will take longer for her kidneys to heal themselves.
The PG itself is doing well. The ulcers have begun to heal since being injected with steroids 2 weeks ago and also increasing the oral steriods. But of course this is not without side effects. With the higher dose of oral steriods (prednisone), Joy deals with high blood sugars. At times, in spite of following a close diet, taking a pill, and 2 forms of insulin, her sugar levels can be over 400. Then at other times, she wakes up and she is near insulin shock with levels being in the mid 30's. It is quite the rollercoaster for us as a family some days. But we have learned well - always keep an insulin pen with us wherever we go and also a couple packages of McDonald's jam.
Keep on praying and sending encouraging notes to Joy. You can send them to her personal email account too at IjahJoyCreations@gmail.com
Joy and Family