Day 1234. Whenever I think that I don’t really have much to write about here, something health related will pop up. Fair warning: today’s post is less about hearts and more about going to the toilet. I have an upcoming colonoscopy appointment this week. Why? My bowel movements have become unusual over the last few months. Some constipation, but also some diarrhoea. There are a few days of preparation before the procedure with its own special diet and also medication to be tak

Day 1222. I am what you in medical terms would call “a hard stick”. I never knew this until I got sick. Every time I need to have a blood...

Day 1185. On Saturday I felt terribly run down. At 10 AM I could hardly keep my eyes open. This lasted all day. By 6 PM I was feeling quite anxious about it. I was worried it might be linked to the VT episode from the Thursday evening. I decided to head to the hospital to have it checked out. I drove myself to the emergency department and parked the car in the paid public parking area. In hindsight, this was a mistake. Once I was admitted to ED, there was no way for me to mov

Day 1179. The trouble with cardiac sarcoidosis in my case is: the damage is already done. Tonight I found myself slouched over the bonnet of my car getting paced out of a VT by my ICD. It was quite unexpected. I guess it always is. But I have been feeling great. I have been mentally noting how good I am feeling now compared to last year, and been soooo thankful. On Saturday I went for a 20 km cycle, and in general had a really active weekend. I have been walking more during

Day 1155. The last few weeks I feel like my brain is made of cotton candy. The school run Monday mornings we normally plan who is picking up our son on which days. Lately I have really been struggling with keeping my schedule straight. I end up asking the husband 4 or 5 times before we leave the house: so, who is doing pickup again? He probably thinks I am losing my marbles. He is definitely noticing. Last Monday I left to go and pickup my son from school in the afternoon. As

Day 1141. I had a noticeable increase in vivid dreams since I started taking Amiodarone. Last year that escalated to some pretty intense...

Day 1087. It’s getting cold now in Wellington. Normally this means I feel like snuggling under a cosy blanket, but I have felt very productive and energetic recently. I have tackled 2 new DIY projects in 3 weeks. I unexpectedly got a call from the radiology service two weeks ago. My cardiologist referred me for a PET scan through the hospital. Here in New Zealand this was fully covered by the public health system. The scan itself was not unexpected - my cardiologist mentione

Day 1074. Last week was my annual cardiology appointment. This time I had a repeat echo, followed by an ECG and then a chat with the...

Day 1014. I had never had any major medical issues before this. When I used to go to a doctor and they would ask me if I had any...

Day 986. It's been a while since I have given a proper update. I have had some family and work things to deal with and also had some...

Day 974. I have been a little quieter than usual at the end of last year. I had some family and professional things to work through. ...

Day 857. This week it was time for my Infliximab infusion. Sometimes that's also called a Remicade infusion. I have mine every 6 weeks,...

Day 840. Looking back, there were a few signs that something was wrong before I was diagnosed and before my first big heart event....

Day 835. When I got the call to schedule the MRI for my back I wasn't sure if I should cancel it. My back has been much better this year...

Day 828. Work has been quite busy and a bit stressful, to be honest. And I have been dealing with some personal things. I am sure that...

Day 791. Last year I had an abdominal scan ordered by the rheumatologist to check my liver. I ended up having two of these scans, as the...

At my request I was referred to a sarcoidosis specialist by my GP. The specialist happens to be a pulmonologist who typically focuses on...

Day 618 (retrospectively) I just realised that I never gave an update of my appointment with the cardiologist in February about what I...

Day 759. I have been having really vivid dreams ever since I started taking Amiodarone back in December 2022. It is so vivid that I have...

Day 726. What’s the word again? What do you call it when? What was I talking about again? What’s that person’s name again? I know brain...