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Treating My Vasculitis

By HealthNo Comments

Last week I was feeling a bit lost. My blood tests had come back positive for vasculitis. My ENT Consultant stated she had referred me to a vasculitis centre and started me on some steroids. She said that I wouldn’t need to be seen again by her, unless the Vasculitis Specialist requested it.

But instead of an appointment to see the Vasculitis Specialist, I got a letter through for another ENT appointment in a month’s time. Having checked this week, apparently the appointment is with a Vasculitis Specialist.

I didn’t know how to navigate the world of vasculitis. I didn’t really know much about what the diagnosis meant. I needed help. So I telephoned the Vasculitis UK’s helpline.

The volunteer who answered the phone was fantastic. But she didn’t have good news. The steroids just mask the symptoms and are not the treatment. The treatment is chemotherapy medications and immunosuppressant medications, with the aim of getting the vasculitis in remission (under control). I could be on this treatment for some time. As once the disease is under control, it will be about maintenance (keeping it under control).

The volunteer gave me some excellent advice around my local specialist treatment centre, which I have followed. Unfortunately, the centre hasn’t yet received a referral for me so I am following this up.

I have no idea what this means for me and my life at the moment. Right now, I’m just having to take it day by day.

Take Care,

Antony

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Vasculitis Facts

By HealthNo Comments

Vasculitis Facts

Vasculitis is a rare inflammatory disease which affects about 2-3000 new people each year in the UK.


Vasculitis means inflammation of the blood vessels. Any vessels in any part of the body can be affected.

Vasculitis UK – The Facts, last accessed: 07/05/24.

Vasculitis is an aggressive autoimmune disease where your white blood cells attack the small veins and arteries in a person’s eyes, nose, lungs and kidneys. The exact cause is unknown but a person is at higher risk of getting vasculitis if they have other autoimmune diseases such as diabetes.

There are different types of vasculitis including:

  • Granulomatosis with Polyangiitis (GPA), previously known as Wegener’s Granulomatosis,
  • Microscopic polyangiitis (MPA)
  • Eosinophilic Granulomatosis with Polyangiitis (EGPA), previously known as Churg-Strauss syndrome.

My ENT Consultant has referred me to a Vasculitis Specialist urgently as she is 99% sure that this is what I’ve got. I remember reading somewhere online that with one type of vasculitis the average life expectancy is 20 years from diagnosis. I’m 37 years old, which would mean my average life expectancy would be 57 years old if I have that type. Unfortunately I don’t know what type of vasculitis Doctors think I’ve got and the diagnosis isn’t yet confirmed.

Hope to have answers soon,

Antony

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Nasal Surgery Update – The Dreaded ‘V’ Word

By Health, LifeNo Comments

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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Preparing for Surgery

By Health, Life, PaganismNo Comments

Do what you can, with what you have, where you are.

Theodore Roosevelt

I love this quote, so with this quote in mind: I have done a candle magic spell and set up a crystal grid:

The crystal grid (photo above) includes a Lapis Lazuli point, two red Tiger’s Eye crystals, two regular Tiger’s Eye Crystals and three Carnelian crystals. Centre is a blue candle for healing.

I need upcoming nasal surgery to be successful. I need to feel healthy again, in order to be happy and return to normality.

My very best wishes,

Antony

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