When I reached the QE yesterday after a horrible journey through 6 large roadworks, Selly Oak one large building site my anxiety levels were sky high. I always ask to be put on my consultant’s pile because registrars have no idea about me and are always shocked when they compare the person who walks into the room with the data on their computer.
Nobody told me that the consultant is on holiday. I discovered this after sitting for an hour chatting to long time patients from our days back at the General Hospital in the 1980s and also the chief lab tecnitian who had arrived there whilst doing her PhD in 1982 and is still chasing the bugs.
I was really fed up when I realised that I would see the registrar but thought it rude to leave. The nurse scurried in before me to explain why I would probably be difficult.
Well, he looked at me, he listened to my chest. He said my sputum didn’t look good and I told him that was very good for me and that I am cautiously giving the ceftazidime a neb again and that so far no adverse reaction. I tell him that I am not so worried about my chest or heart but that I am fed up with my GPs who refuse to take seriously the fact that blood tests indicating platelet problems and anaemia keep coming back abnormal and I am constantly exhausted
Then he looks at my last scan from 2015 after I had the empyema. He rubs his face with his hands. He asks have I been tested for cf - yes several times. Then he launches into an explanation of the scan and what inflamation does to the body - yes sir I could have told you that.
Then he tells me that my scan is worse than many cf patients. Yes I could have told him that.
Did you come here by yourself?
How far can you walk?
Do you manage to cook for yourself
The registrar confusion has taken over
Anyway, in an attempt to find something that his boss or the GPs have missed he orders 5 different sputum tests in 5 diff pots ( he offered the physio to help me fill them, I told him that a visit to the loo will suffice) and a total if 23 blood investigations and I had to trot around for an xray.
Sadly for him he won’t find anything new with the bronch but maybe the blood tests will begin to show what is giving me the classic symptoms of anaemia or vit B12 deficiency.
These experiences depress me beyond measure because I have spent every day of my life striving to be ‘normal’ and when I am looked at almost as though that attitude makes me a fraud because I am, in fact, a sick invalid, it makes it even more difficult.
My consultant has known me 20 years, she knows the vicissitudes of bronch in our every day existence and is guided by me as to how I feel, not how a scan says I should feel.
Then I just had to negotiate a person who had dropped dead in the doorway of the hospital, the roadworks in rush hour, a young lady who came dashing down the outside of a line of cars and would have crashed into me if I didn’t have good breaks and amazing reactions and pouring rain.
How happy I was to reach my dear little bungalow and Twinkle demanding his tea.
So hopefully doctors finished with for me until I tackle the GP about the results of the blood tests and it is just supporting my two closest friends who are suddenly both undergoing tests for life threatening conditions.
Onwards and upwards. Thankyou for plodding through this.
Pneumonia and pseudomonas
Not a good day
I have joined this forum because my Husband has lung disease he was diagnosed some years ago with Pleural Plaques due to asbestos exposure
what to do?
