On Tuesday of this week, I was invited down to the hospital where I was having Nasal Surgery for a CT Scan. The CT Scan was successfully undertaken.
Two weeks before the surgery they did a blood test that indicates if vasculitis is a possibility and it was positive.
Today, after a sleepless night, filled with worry and which resulting in me writing a very short For The Unlikely Event of My Death letter, I had nasal surgery.
You may be pleased to read that I survived the general anesthetic. I’m counting this as just about the only win of the day.
They completed a nasal wash out and took several biopsies. They are 99% sure the damage has vasculitis, which is a rare and particularly aggressive autoimmune disease.
The nasal damage, vasculitis, the worry and stress are all having a negative impact on my diabetes.
So the current plan is:
- An urgent referral to a vasculitis Consultant that will see me with 2 weeks.
- A Chest X-Ray completed today to check for signs of vasculitis in my lungs.
- A review by ENT Consultant in 3-4 weeks, to look at biopsy results and with a view to repairing the damage once the vasculitis is well managed.
- Long term steroids (Prednisolone) to help manage the vasculitis.
- An urgent referral to Dieticians to go through Carb Counting, in preparation for looking at getting an insulin pump to better manage my diabetes. Vasculitis, steroids, nasal damage, stress and anxiety will make managing my diabetes more difficult as they all increase blood sugar levels. So an insulin pump linked to a blood sugar sensor seems the way to go with this.
- To have a telephone review by the Diabetes Specialist Nurse in 2 weeks and to look at getting a preparation for pump appointment.
- A review by the Mental Health Team in a few weeks to look at the possibility of starting lithium as my bipolar symptoms are getting worse and other medications I’ve tried have too severe side effects.
- Anything else I may have missed off this list.
Thank you from the bottom of my heart for the influx of very kind messages, wishing me well and enquiring how surgery went. I have been overwhelmed from the responses on both social media and private messages. Please forgive me if I have not replied to you individually yet.
I’m mentally and emotionally exhausted right now and there’s obviously a lot of information to process, a lot going on and a lot to do.
Write soon,
Antony
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