That didn't go according as planned.

A bump on the road to having valve replacement surgery.

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My aortic valve needs replaced. But the surgeons will not preform my surgery until I taper my steroid dose to a much lower dose. (One of the side effects of steroids is that they thin out everything - skin, tissue, etc. The surgeons have said that at a high dose of steroids, it is like stitching together wet tissue paper.) My rheumatologist is managing my steroid taper. We had a plan. Taper by 4mg each week and monitor my inflammation markers every two weeks. Once we tapered the steroids down to a maintenance dose, I would have my valve replacement surgery. My body did not follow the plan.

Takayasu's Arteritis is inflammation of the aorta and its branches. My inflammation is controlled by steroids, and a biologic drug. For the last ten years my biologic drug has been Actemra. Over the past year, as my pain and inflammation increased, it was decided that Actemra was probably not controlling the inflammation anymore. So, my steroid dose was increased, and my biologic drug was changed to Humira. I just injected my 4th dose of Humira last night. I have been told that it takes 4-6 doses for the drug to kick-in and see results. Currently I inject Humira every two weeks. So, I have another couple weeks to see if Humira can get the inflammation under control. *fingers crossed* SED rate and CRP, which are blood tests that indicate the amount of inflammation in your body, help determine if we can taper the steroids. For reference, a normal SED rate is between 0 and 27. Thursday's blood work showed my SED rate to be 136. Two weeks ago it was 48. A normal CRP is between 0 and 5.0. My CRP from my blood test on Thursday is 66.2. Two weeks ago it was 10. Because there was such a huge jump in my SED and CRP there was concern about my red blood cells. My blood work revealed that my red blood cells have been affected by the high levels of inflammation in my body. This is called polychromasia.

So, what does all of this mean? Well - in a nutshell, we cannot taper my steroids as planned. In fact, we had to increase the dose of steroids back up a bit. My rheumatologist is trying to get our insurance company to approve weekly Humira instead of biweekly. Hematology is being consulted about the polychromasia. The really frustrating thing is that I feel okay. I am not in pain and don't have any new symptoms.

I am MAD, and SAD, and FRUSTRATED. The symptoms from my aortic insufficiency severely impact my quality of life. I am dizzy and almost pass out often. I cannot walk very far without being short of breath. I can only climb about 7 stairs at a time. Taking a shower is exhausting. I do not drive. I am not working. I spent lots of time sitting - in my favorite chair, in bed, on the couch. Having my aortic valve replaced sooner than later was the plan. And now that has been pushed even further away.

Please pray or send a good thought my way as I try to wrap my head around this set back, as the doctors try to figure out next steps, and for my current treatment to kick in and reduce the inflammation in my body and aorta.