Ok! Lots to update here! Been a busy health week.
Monday – had my weekly blood work done.
Tuesday – regular psychotherapist appointment. I was assured I am not a psychopath, so that is good!
Wednesday – had an afternoon of testing in preparation of seeing a new lung specialist the following day. I saw this lung specialist while I was in the hospital and I really liked her. But with how admissions and discharges work, since she didn’t technically admit me to the hospital, she wouldn’t be my attending physician once I was discharged. But she still agreed to see me. So that afternoon I first did the lung capacity testing, the same as when I see my other lung doc, and then I did a 6 minute walk test. I had to walk for 6 minutes as fast a I could, without running, and they monitored my oxygen levels and heart rate, and how far I could walk. I walked 619 m, and was told that was pretty darn good. And my overall lung capacity tests show that I am back in normal ranges. Although my small airways still show some signs of damage, but it is unclear if this is from my illness or some other previous damage. But the good news, is the capacity for the small airways are still showing improvement with each test.
Thursday – saw the second lung specialist, Dr. K. She doesn’t have any concerns with my lungs, and from a lung perspective, said she would recommend reducing my prednisone. So going forward, I won’t see her again, unless I want to. Because otherwise she would just be doubling up on what my other lung doc would be doing. She did talk to me about GERD though. Because I am off of the pantaloc for my heartburn that the prednisone causes (due to it potential affecting my kidneys), my heart burn has returned. She explained that GERD can actually be harmful to your lungs, if the acid comes up and then gets into your lungs, causing scaring of the lungs. So because of this, I am to avoid all possible irritants, such as food triggers, dust and second hand smoke, for example.
I also spoke with a dietician, as I have concerns with my weight gain. Before when I was training, I could just eat what I wanted to eat, well, almost. Now, that is not the case. The prednisone consumes my existing muscle, decreases my metabolism and increases my appetite. So I needed to be educated with what I needed for calories and protein and everything else, to be healthy, but not continue gaining unwanted weight. I only want to gain my muscle mass back. So we had a great chat and she calculated what I need to be doing and now I am going to do it. Let’s fire up the bbq for steaks!
Friday – I saw my rheumatologist and got some promising news. For the last two weeks of my blood testing, my creatinine levels have began to decrease again. December 15th – 152; December 18th – 120; December 28th – 94; and January 4th – 82. I will keep going weekly though, to continue monitoring it. Because of this decrease, I have not received a call from the kidney specialist, which is a good thing too. Now, here is a lesson in always being in tune with your body and aware of things going on. All of my previous urine tests have come back negative for blood or protein, which is why the elevated levels of creatinine are so confusing. But my last urine test did come back testing positive for blood, so everyone was getting all excited about that. Until I explained that I noted I was menstruating during that particular day, and then everyone was like, “Ohhhhh. Ok. No biggie.”
So now what? Well, I am still such a confusing case! If it was obvious that I had ONLY the organized pneumonia, then I would just come off the prednisone and be done with it. But because of the potential of vasculitis (yes, this is my official diagnosis, but there is still uncertainty surrounding this), there is the concern that as we decrease the prednisone, my symptoms return and I have a flare up. That could be even worse than before. If it was confirmed confirmed I had vasculitis, they would be adding another medication to suppress my immune system, that is not as harsh as the prednisone. And the idea is to reduce the prednisone, then add the new drug so there is overlap, allowing the new drug time to start working (it can take 6-12 weeks to really be doing its job), and the be off the prednisone. But if we do this, this new drug still has negative side effects, and I would be on it for at least a couple of years. Hence the hesitation.
SO. The plan is to wait 4 more weeks. We are going to decrease my prednisone by 5 mg to 25 mg for two weeks, and then another 5 mg to 20 mg for another two weeks, and then I will see the doc again. I will also continue with my weekly blood work to test all my levels. Definitely if I start to see symptoms as I had before, then it will be obvious that we need to add the second medication. If I still feel “ok”, then I have no idea what we will do next.
There. How’s that for an update?