The Current State of Things - LONG POST WARNING.

A look at my current health and happenings.

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I was diagnosed with Takayasu's Arteritis (TAK) in 2004. I had open heart surgery to graft my aorta and one bypass in 2006. And then we treated the TAK and the ensuing side effects of medication over the coming years. There were bumps in the road, but the past few years were relatively calm. I was on a maintenance dose of steroids, had routine appointments with my specialists, and my biologic drug had been switched from infusion to self-injectable .

Then, 2022 happened. In June I started feeling sick - it started as an ear infection and then became a sinus infection. Three rounds of antibiotics, some steroids, two visits to the ENT and countless "MyChart" messages preceded my sinuses being declared "infection free" mid-August. (That is, until I developed another sinus infection mid-November.)

Overlapping some of the sinus drama was chronic pain in my upper back and sternum. The pain became unbearable which led to a visit to the ER. Because of my cardiac history - the did a CT scan to make sure my aorta wasn't dissecting. Prior to the CT scan they pre-medicated me with steroids. And the pain WENT AWAY. For several days. Wash, rinse, repeat and the pain reoccurs. Another trip to the ER, at which point I was "begging" for steroids. (Side note - I have a love-hate relationship with steroids. They are great for controlling inflammation, but the side effects are a big bummer. It took me years to taper down to a maintenance dose of steroids.) I hadn't been on a substantial dose of steroids in quite a while. Under normal circumstances, I would not even consider adding steroids back into my medication regimen. But.the.pain was relentless. Thus began the dance of adjusting prednisone doses, other meds and taking ibuprofen every 6 hours to manage the pain so I could attempt to carry-on with life.

After my sinuses were declared "infection free" in September there was some discussion that I may have "post-infection inflammatory syndrome", which was becoming more widely recognized after COVID infections. My rheumatologist was at a loss and was worried that we were missing an important piece of the puzzle and referred me to Infectious Disease. At this point the inflammatory marker blood tests started climbing as well. Infectious Disease ordered a head CT to check my sinuses, which was unremarkable. At this point, my rheumatologist decided to change my biologic drug. This new biologic drug, Kevzara was quickly approved. Infectious Disease also suggested an MRI of my back, which didn't provide any answers for my back pain.

While all of these tests, medication changes, and pain management were occurring I developed a red and painful left eye. Eye drops, ointments, and six appointments later I still had a Corneal Ulcer that wasn't improving. I moved my care to the Eye Center at the teaching hospital to make communication and coordination with my rheumatologist easier. Six more appointments with corneal specialists, med students, residents and fellows. So many people have looked in my eye. The team at the Eye Center worked with my rheumatologist and made a plan for some very aggressive steroid treatment. I had a three-day course of IV steroids in the hopes of knocking out all the inflammation ravaging my body (and eye). At this point, we had eliminated the pain I had been battling, and my eye showed improvement.

After starting steroids over the summer, I noticed that things were becoming very physically hard to do. Climbing stairs, bending over, anything that required physical exertion was difficult. I attributed this to the steroid side effects and assumed it would get better once the dosage was lowered. Early December I had a routine follow up appointment with my cardiologist. I mentioned my fatigue, dizziness, shortness of breath, etc. She felt that these symptoms were cardiology related and ordered a heart scan. She also suggested I take some time off work. While I waited for my heart scan appointment my dizziness increased. Almost every time I got up from sitting, I would become very dizzy. I would either have to sit back down or lean against something. Sometimes I would even shake and lose my grip on whatever I was holding in my hand/s. Due to being immunocompromised from the steroids, and my physical limitations, I stayed home and laid low.

Fast forward to Christmas Day. I received a message from my cardiologist saying that my heart scan showed severe aortic insufficiency and that I needed to see Cardiovascular surgery to discuss repairing my aortic valve. The first available appointment with the Cardiovascular Surgeons was January 9th. Waiting with ominous news hanging over your head isn't easy. We told our families but asked everyone to keep it confidential until we had more information. The appointment on January 9th confirmed that I would need aortic valve replacement. BUT I cannot have surgery until I am on a much lower dose of steroids. My rheumatologist and I are working to taper my steroid dose as quickly as possible while making sure my symptoms don't return. We switched my biologic drug again and I am now on Humira. Hopefully this change will decrease my need for the steroids. The estimate to taper and be ready for surgery is 6-8 weeks. My heart function is still good, so there isn't an imminent need to have surgery immediately. In the meantime, I am taking care of pre-op testing and other requirements. I have a lot of time to think and research, which is both good and bad. I am looking into different chairs for recovery, adjustable bed frames, button down shirts, etc. These are all things I didn't have time to do during my first open heart surgery in 2006.

Knowing the root cause of my symptoms and knowing it can be fixed is good, but I didn't think it would take so long to be able to have surgery. I let my job know I wouldn't be able to come back. So now I am not working, not driving (due to my dizziness), and not going out in an attempt to stay healthy. And now I wait.