More waiting

In my last post I mentioned that I am waiting for a Fibre Optic Bronchoscopy in September; as well as that appointment I have also been told I will be having a TB Blood Test a few days before it.  I'm a little confused as to why they have asked for it considering I have had a chest X-Ray and a CT scan and the NHS articles about TB indicate those are the main method of diagnosing the condition.  In my mind that means they should know whether I have that or not, so that leaves me wondering why they need to do the test.

When I found out I was having a CT scan, the articles discussing their use said that they are not used for screening, that they were only used to confirm a diagnosis not to help make one.  That has led me to wonder whether the blood test for TB will be in the same vein [no pun intended] of being a test that is done to confirm a diagnosis rather than screening.  I have no idea whether that is the case and I have had no communication with the consultant or the doctors to be able to discuss that.  Really one of the worst parts of this whole experience has been the lack of communication and the waiting.  The longer I wait the more my mind wanders, and yes, the more I Google things.

I know many people say you shouldn't Google anything or that you shouldn't read anything - I disagree with that.  Uncertainty is hard to deal with, and anxiety peaks and troughs in an inverted correlation with the amount of detail you know.  The less you know the more you worry, and the more you know and understand, the less worry the whole process evokes.

My mind will automatically go to the worst case scenario and dream up horrible visions of what you will endure; knowing more about something can eradicate much of this by providing reassurance.  There seems to be an attitude that the less a patient is told the easier it will be for them to handle the whole experience, I don't know how that works for other people but for me that's one of the worst things you can do.  If you leave me to my imagination, thinking it will be reassuring, then bitch you severely underestimate the depth and darkness my imagination can dream up.

As a general update to my condition however, there have been new symptoms that have developed which in themselves are causing me worry.  I've noticed changes to my vision which I want to discuss with my Ophthalmologist, I also want them to be aware of my diagnosis since as far as I am aware no-one has told them and Sarcoidosis can affect the eyes so I want them to keep an eye on it - again no pun intended.

It's rather disheartening to be sent for test after test, and to receive more referrals for more tests, it's making me wonder what else they will find.  I've read a bit about TB and from what I gather there's two main types of it, latent and active, the former can be treated with antibiotics, the latter however can be difficult to treat.  It also doesn't help that the latter has a 50% survival rate if it isn't treated.  The sense of urgency is creeping into my mind now and that's making me evermore anxious about how long I am waiting.  Time can't move quick enough.  I'm counting down the days, half in anxiety over what is to come, and half in anxiety over how long it has already been.