DOOMED! & My Vasculitis Tongue

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DOOMED!

At a recent clinic appointment with a Renal Consultant, I asked the above questions. The Consultant stirred more intensely at his computer screen, avoiding eye contact. I waited. I wanted some answers. But instead he ignored my questions and moved on to asking about something else.

This wasn’t the first time this had happened to me. A few weeks before, I had seen the Specialist Nurse in her clinic and asked the same questions. She had looked down at her hands and given practically no answers or useful information – instead offering to refer me to a Psychologist.

Months before, I had asked the same questions to my Vasculitis Consultant, who had also avoided eye contact and gave some vague information about Rituximab infusions.

But being a Registered Nurse, I have seen this reaction by Doctors and Nurses to these sort of questions before. When I worked in an A&E Department, patients who were doomed!, destined to die, usually pretty soon, who asked these questions got the same reaction. Eye contact avoided by the Doctors and Nurses. No answers to the questions asked or useful information given.

I do understand the two Consultant’s and the Specialist Nurse’s reactions to my questions. Most Doctors and Nurses go into their professions to heal; to either make people better or to keep people alive for as long a time as possible. We live in a time where all people, including Doctors and Nurses have high expectations of healthcare. Good healthcare has made the occurrences of young deaths very rare.

So imagine being a Doctor or a Nurse and knowing that you could do very little to meaningfully extend a patient’s life due to a disease. That at best, you might minimally slow down its progression. This is sadly the case with Vasculitis.

Now imagine that this patient asks the questions above. These questions are uncomfortable for Doctors and Nurses, because of the wide array of thoughts and emotions they trigger within them. Doctors and Nurses generally don’t want to lie to their patients. Nor do they want their patients to become hopeless, sad, angry or upset.

It takes a great deal of courage, skill, awareness of the patient and themselves for any Doctor or Nurse to have this sort of extremely uncomfortable conversation.

Given all of the above, it is understandable that the two Consultants and the Specialist Nurse have reacted in the ways in which they have. However, in my case, I would prefer we navigate this uncomfortable conversation, so I have answers, know what to expect and have more information.

How You React

There is this very famous quote:

I can’t remember where I first heard this quote, but it is very true statement and the quote has always stayed with me. Everyone reacts to what happens to us through our thoughts, emotions and behaviours (what we say and what we do).

Here are my thoughts regarding the way the two Consultants and the Specialist Nurse have reacted to my questions:

A Note About Legacy

A legacy is essentially what you leave behind when you die. It can be physical things such as possessions/property/money, or less tangible things like memories/values/impacts on others or a combination of both. After a great deal of thought, I realised something:

My legacy will be decided by those that carry on living after I’m gone.
It is not something for me to decide on and certainly nothing I need to influence.

Realising this was a great relief, as I realised that there is nothing I need to say or do around this.

Emotionally, I feel:

Behaviour-wise, I am taking each day as it comes, one day at a time. Vasculitis symptoms fluctuate, meaning that the severity of symptoms and what I am able to say and do varies greatly. I’m currently doing what I can, when I can.

My Vasculitis Tongue

Vasculitis is a rare disease and as such information available online is limited. There are also a number of different types of Vasculitis, each having slightly differing symptoms. Vasculitis can also vary in severity from person to person and at different points during the diseases’ progression. A great source of information is the charity Vasculitis UK.

I’m documenting my experiences living with Vasculitis on this blog for two reasons. The first reason is that it helps me. The second reason is that it might potentially inform or help other people experiencing the same.

With this second reason in mind, I want to share with you this AI generated image (based on a photo of my own tongue) to illustrate what a tongue affected by Vasculitis can look like:

I have chosen to use an AI generated image, rather than an actual photo due to embarrassment about how my tongue currently looks. I do appreciate that I have no valid reason to feel this way, but nevertheless it is how I feel. I can assure you that although it is AI generated it is an accurate representation. The signs of Vasculitis being present in both the centre top of the tongue (deep red lines) and either sider of the tongue (lighter red lines).

Initially, I noticed the lines, but there wasn’t any real swelling or pain. However more recently, pain has started to be present and it does make it more challenging to eat hot foods and drink hot drinks.

What’s Next?

I am informed that my recent blood results did not indicate that my Vasculitis is currently active, however I am having flare ups of symptoms very regularly, indicating that the blood results may not be giving a fully accurate picture, or that there maybe something else going on.

So I have had an MRI scan with contrast, am for an urgent ENT Review and in the meantime I continue to take photos of the facial swelling and state of my tongue and report my symptoms to both the Vasculitis Specialists and my GP.

Write soon,

Antony

Other Content

If you liked this post, you might like:

• All Vasculitis Content page.
• Post: Vasculitis Fatigue.
• Post: Vasculitis Treatment: Rituximab.
• Post: Vasculitis Facts.