Cardiac Sarcoidosis & Me
Cardiac Sarcoidosis & Me shares M from New Zealand 's sarcoidosis journey.
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I am stable after 3 and a half years
I am stable after 3 and a half years
Seizure while preparing for a colonoscopy
Seizure while preparing for a colonoscopy
Emergency room madness
Emergency room madness
Very Tiresome VT
Very Tiresome VT
Where is my mind?
Where is my mind?
Day 1155.The last few weeks I feel like my brain is made of cotton candy. The school runMonday 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 the bell rings for the
Am I still Amiodarone dreaming?
Am I still Amiodarone dreaming?
Day 1141.I had a noticeable increase in vivid dreams since I started taking Amiodarone. Last year that escalated to some pretty intense nightmares.So what has happened since then?My cardiology team suggested that the nightmares might be more likely caused by taking Bisoprolol. I started taking Bisoprolol more than 6 months before starting Amiodarone. So I was not convinced.I reduced my Bisoprolol dosage on the advice of my cardiologist to see if it had any impact. It did, but not on the nightmar
I should be happy
I should be happy
First PET scan in 2 years
First PET scan in 2 years
My annual cardiology appointment
My annual cardiology appointment
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 cardiologist.My echocardiogram scan was at 08:00 AM. I had pre-ordered a taxi to make sure that I had a reliable way of getting to the hospital. I find Uber so unpredictable these days - sometimes the driver shows up and sometimes they just cancel for a better fare.I ended up being a little early and enjoyed a coffee from the Mojo at the hospital. Decaf of course.Th
Cardiac sarcoidosis changed my outlook on the medical profession
Cardiac sarcoidosis changed my outlook on the medical profession
Early menopause has arrived
Early menopause has arrived
Day 1004.Wow, it's been over a 1000 days since my life changing diagnosis of cardiac sarcoidosis. One constant has been an ongoing list of health issues - as soon as one area calms down another flares up.Symptoms of early menopause I am 41. But for the past few months I have been having daily hot flushes. Most days multiple times a day. It feels like blushing, but starts from my face and spreads to my chest, my arms and legs. And while it's happening I go bright red and sweat profusely. It last
Congratulations, you have vertebral sarcoidosis!
Congratulations, you have vertebral sarcoidosis!
Day 961.In January I had a bone scan and a follow up appointment with the orthopedic surgeon about the lesion they found on my spine last year.What is a bone scan like?This has been a pretty easy scan in terms of preparation. No special diet is required, and no fasting. That's a great start!The bone scan had two parts to it: • An injection of radio active dye. • After a period of waiting for the dye to develop, the scan itself.The injection was pretty uneventful. The nurse finds a lucky vein, an
A successful week for referrals
A successful week for referrals
Years 1 to 3 of living with cardiac sarcoidosis
Years 1 to 3 of living with cardiac sarcoidosis
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. Nothing like a bit of stress when you have sarcoidosis, hey.As a nice way to close off last year I thought I would do a summary of my sarcoidosis journey to date.Year 1 - 2022I was first diagnosed with cardiac sarcoidosis in 2022. Looking back, it was one of the most difficult periods of my life.I had some very dangerous heart arrhythmias, over which I was in com
My symptoms before I was diagnosed with cardiac sarcoidosis
My symptoms before I was diagnosed with cardiac sarcoidosis
Infliximab infusion
Infliximab infusion
Meeting with a sarcoidosis specialist for the first time
Meeting with a sarcoidosis specialist for the first time
At my request I was referred to a sarcoidosis specialist by my GP. The specialist happens to be a pulmonologist who typically focuses on lungs as a specialty. I didn't know what to expect from the meeting and didn't want to get my hopes up, but it was quite interesting.She mentioned that there is a monthly sarcoidosis meeting in New Zealand where doctors from all over New Zealand get together and discuss different patients and cases. She thought she remembered my case being presented there.We d
My story | Cardiac Sarcoidosis & Me
My story | Cardiac Sarcoidosis & Me
Cardiac Sarcoidosis & Me tells the story of M from New Zealand who was diagnosed with cardiac sarcoidosis in 2022. She shares how the disease is impacting her body and mind.
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