Follow up, Progress and FRUSTRATION

and eventually acquiescing.

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Here are a few updates:

CARDIOLOGIST - I had a follow up appointment with my cardiologist last week. Jeff went with me so that he could help me ask good questions. But my cardiologist beat us to the punch and answered all our questions before we could even ask them. She spent a lot of time with us explaining the adjustments she made to my medication, how the aortic valve works, and how my heart function is being monitored. She also emphasized that there is no further medical intervention that they can provide for my valve, only surgical intervention. She also reiterated the risks involved with my current dose of steroids and the risks that would cause during surgery and recovery. It was a good FOLLOW UP appointment.

EYE - I had steroids injected into my eye on March 3rd. I have been dealing with inflammation in my eye since October. My eye was red and painful despite multiple attempts to calm it down. Historically my eye did respond to oral steroids, but raising the dose of my steroids is not feasible right now. A steroid injection in the eye comes with risks, so I had to follow up one week later. Guess what - my eye has improved!!! It doesn't hurt anymore and is much less red. PROGRESS.

STEROID TAPERING - I had blood work done at the end of last week. The results showed that both of my inflammatory markers had gone up. Alot. Not exactly the results I wanted. I had been alternating my dose of steroids between 16mg and 20mg every other day with the hopes of tapering down at the start of the week. So - instead I will be staying at 20mg for now. This puts me even further and further away from surgery. FRUSTRATION.

LIFE - I have ACQUIESED on several things over the past weeks:

1- Not working.

2- Not driving.

3- Using Winnie the wheelchair for anything that requires a lot of walking.

4-Being mostly home bound, with occasional outings and visitors.

5 - (Almost) always having someone home with me. (Because of my near passing out and dizziness).

6 - I am no longer trying to determine a timeline for my aortic valve replacement surgery. I

have to let it go. It is fruitless to try to predict the length of time before I am able to taper my

steroids to a low/maintenance dose. I will take each day at a time, and focus on staying as healthy as

possible.

Meal Train - provide a meal on a Wednesday.

SignUp Genius- no current appointments, errands, or rides needed.

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