It’s been a busy week

Day 592.

I have had a few medical appointments this week. This is on top of returning to work on Wednesday and solo-parenting my son while my husband is overseas.

Physio

On Monday I met with my physio therapist. I have been seeing the physio for lower back pain since the end of last year (2023).

My lower back pain has been really good over the Christmas break. The physio added one new exercise to my regime.

I have to monitor how my back pain goes with my return to work, and find a new routine that includes doing exercises at the office. I will also continue cycling to the office.

Rheumatologist

On Wednesday I met my rheumatologist at my regular out-patient clinic.

He is happy with my last PET scan, as the inflammation in my heart was much reduced. Based on that, he asked me if I am happy to reduce my prednisone dosage to 5 mg a day. I have been feeling well from a fatigue perspective. Fatigue has been my barometer for evaluating active inflammation. So I said yes - that's fine.

He was a little concerned that I had another VT in December. But that got overshadowed a bit by my new symptom: pitting edema. He checked my legs and also my jugular vein in my neck, and requested a new appointment with my cardiologist.

I was worried about some of my liver function blood test numbers being higher for a few months. He didn't seem concerned at all saying that it is only slightly elevated.

Infliximab infusion

On Thursday I went to hospital for day clinic to receive another Infliximab infusion. It was pretty uneventful.

I told the nurse I was generally well. I did inform her of the VT and the edema since my last infusion. This lead to having a short wait for the rheumatology registrar to come out and see me before I could start my infusion.

I felt the registrar was a bit dismissive of my potential heart failure symptoms, but she did discuss my symptoms very thoroughly.

I felt a bit dizzy during the infusion, but it didn't last very long. As per usual my blood pressure was quite low after the infusion.

Edema

The rest of the week I spent freaking out about the newly discovered pitting edema symptoms. I did way too much Google research, listened to Podcasts and watched YouTube videos about heart failure.

I have reached out to the cardiac nurse to ask if there is anything I should do while waiting for a cardiology appointment. She emailed the cardiology team, and awaiting their feedback. There was no reply by the weekend.

I will try and calm down over the weekend.