Six months have passed

and I still need my aortic valve replaced.

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Here is what has happened in the last six months:

12.9.22

Last day of work before taking a "pause" to deal with my health concerns.

12.13.22

Started 64mg of Medrol (steroids).

12.23.22

Had a MRI: Cardiac Morphology & Function test.

12.25.22

My cardiologist let me know that my aortic insufficiency had become severe and would require surgical intervention.

12.30.22

Started Humira for my vascular inflammation.

01.02.23

Decreased my Beta blocker dose by half, which in turn raised my resting heart rate into the 90 bpm range.

01.09.23

Cardiovascular Surgery confirmed that my aortic valve would need to be replaced via open heart surgery. BUT - my steroid dose would need to be at 5mg before they would perform surgery.

01.10.23

Quit my job.

01.19.23

Had my pre-surgery Angiogram.

02.17.23

Started semaglutide to regulate my blood suger and A1C.

03.01.23

Started weekly methotrexate injections to help control my vascular inflammation.

04.04.23

Had a PET scan, which confirmed that there was inflammation in my aorta, but no other inflammation in my body.

05.06.23

Replaced Humira with Xeljanz to control my vascular inflammation.

06.01.23

Graduated to appointments in the eye center every 3 months.

TODAY, 06.06.23

Medrol (steroid) dose 14mg/16mg on alternating days.

Additionally:

• I have had appointments with the Eye Center at Rush every 2-5 weeks since October to monitor and treat the scleritis (inflammation) in my left eye.

• I have had blood work done just about every two weeks for months.

• I have continued to have appointments with rheumatology and cardiology.

• Winnie the Wheelchair is back in action. She helps me when it is a "long" walk (more than 15 ft.) and has provided me the opportunity to do more things - like go to Chicago Fire games.

It has been a long six months since it was confirmed that I would need aortic valve replacement surgery. Initially we thought that I would be headed to surgery within two months. But that has not been the case. I haven' t been able to taper my steroids as quickly as we had hoped. In fact, I have been stalled at my current dose of steroids for almost two months as we try to figure out how to get my vasculitis, Takayasu's Arteritis, under control.

I spend most of my days sitting - either upstairs in our bedroom or in the living room in my favorite chair. I spend my time knitting, working on Sudoku puzzles, working on puzzles, reading, napping and binge watch Gordon Ramsey shows. I seem to be having more bad days than good days - both mentally and physically. I am dizzy, unsteady and shaky throughout the day. I sometimes have headaches and upper back pain. And I am fatigued.

HOWEVER- we are so appreciative of YOU! All of you have provided support, love, hope, good thoughts, care and compassion. I am not sure how we would have gotten through the last six months without all of you.

• 15+ meals have been provided for us.

• Countless cards, texts, gifts, gift cards, flowers, etc. have been given to us.

• Numerous people have provided rides to and from medical appointments in Oak Brook and at the downtown Rush Campus.

• Lots of people have come by to visit and spend time with me.

I would be remiss if I didn't mention how well my hubby and son take care of me - from filling my water, getting me snacks, sitting with me, checking on my physical pain and mental state, putting up with all things Gordon Ramsey, taking care of the dogs, taking care of the house, doing laundry, running errands, grocery shopping, and the list goes on and on.

Mealtrain - provide a meal on Wednesdays or Thursdays

Signup Genius - rides to/from medical appointments or keep Melissa company on a Thursday

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