I had a lung doc appointment on Wednesday and saw my kidney specialist today. Here is what they had to say.

My lungs still look the same. This is determined by the breathing tests I do each time I see him, so once a month. However, I have been quite congested recently and have developed a cough, that started with a sore throat. Arrine has been sick, so I assume this is from her, especially now that I am off the antibiotic. But because these are similar symptoms to when this all began, he wants to ensure that this isn’t anything more serious. So he ordered that I get another chest x-ray to see. A possibility is that as the prednisone is decreased, the lung symptoms return, which we don’t want and need to stop if that really is the case. He said he would call me if the x-ray shows any concern. Otherwise the plan is to see him again in a month and do the testing like we always do. He wants to ensure that my lungs are monitored as we decrease the prednisone, to be proactive incase anything should go sideways again.

Kidney doc is like, “What zee heck?” My last four weeks of blood work showed my creatinine levels decreasing, until this past Monday, where I was back up to 100. So, we are sort of starting the cycle all over again. We will continue doing the blood work every week to continue monitoring. And if there are significant increases, then the kidney biopsy is back on the table. But if I still hover below the 100 mark (which is considered normal), then we will just carry on monitoring. His concern is that there is some more significant issue with my kidney function and does not want to let it go undiagnosed. But one thing interesting to note, is that he looked back in my history and in the 2002s, my creatine numbers fluctuated between the 70s and 93s. So he also explained that these fluctuations could just be normal for me, and with more data, we will have a better idea of what is “normal” for me.

I like this kidney doc. When he turned to his computer to pull up some data, he paused and said, “You want to know this stuff, right?” And I was like, “Heck ya!” It feels really great to have doctors recognize how much I want to really understand and be a part of the decision making with my health. And then when we were talking about possible outcomes, he said, “Well, based on probability, you have a good chance that this issue with your kidneys isn’t serious.” And I was like, “I’ll take it, probability!!” (Even though the odds were against me to begin with, but let’s not focus on that.)

Thats’s it for now. I’ll decrease down to 20 mg this weekend, then see my rheumatologist in two more weeks, then these guys in another month. And keep getting pricked once a week. MY BLOOD WORK I MEAN!!