I got some really great news at my kidney specialist appointment last Friday. The last two results from my bloodwork had my creatinine at normal levels again (in the low 80s) and there was no indication of vasculitis from my kidney biopsy. From a kidney perspective, there are no concerns. If we were only focused on my kidneys, my specialist said he would not add an additional immune suppressant drug. And now I will only get my levels checked again in three months and see him in 6 months. BUT, this still doesn’t provide any answers to why my levels have spiked so high. So he still considers me a “question mark”, which is why he wants to see me again. So, fingers crossed things continue to be good from a kidney perspective. Go kidneys go!!

But there are other things going on that are frustrating, and again, a reminder of how you MUST be your own health advocate. When I first questioned staring the Imuran after we agreed that was the plan with my rheumatologist, I called her office and left a message stating that I wanted to wait until I met with the kidney specialist to get his final word. No response. Ok. Fine. Then after my appointment on Friday,   I called and left another message saying, “Ok, kidneys are good. I don’t want to start this other medication. But this should probably be actually discussed.” I realize it has only been a day since that call, but still no word back. There is a possibility this delay could really mess me up. Which worries me big time. BIG. TIME.

So, related to this, are the specialists I mentioned previously who will review my medical information. Well, I went to my family doctor’s office on Thursday, February 25th to sign all the consent forms, when I was then told my doc had to review and sign off on the release first, and she would be back on Tuesday. I was super frustrated. But my nursing friend calmed me down. Ok. I can wait a couple of days. Well, I gave my doc Tuesday leeway and called on Wednesday. I was told that my doc still needed to review the request. I called on Thursday and was told the office staff was putting it together that afternoon and I would be called to confirm information. I was never called. I called on Friday. Oh! The paperwork has been misplaced. My doc was gone for the weekend so an urgent message was sent to her to try to locate it. I called Sunday and she hadn’t replied to the urgent message. I called on today. I was told hopefully she would look at it when she was done seeing patients. I asked to speak to the office manager, to which I was transferred to leave a voicemail. I have yet to be called back. I plan to camp out at the office tomorrow.

This blows. (Which I am thankful for, that my lungs can blow again.)

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