Chapter 20: A customer of the Health System

In the past few weeks I have been a customer of the Health System.  This is the way things have gone.

Every disease varies from person to person and within the same person from time to time. The disease will constantly alters its appearance. It will not always appear typical or classic.  It will not always appear as described in the text books.

Management also depends on another person who is continuously changing and evolving: the clinician.  Clinicians all vary. They are not machines and some days they are feeling better than other days. Their emotional and physical state depends on both home and work, What happens at home and at work affects their work. In other words the work they do will affect their other work.Their knowledge about a particular topic varies for a multitude of reasons and may influence management.

The quality of your care depends on more than just you and the clinician. It depends on other people. Many times I have sat silently as the clinician has attempted to understand x-ray reports or lab results. The clinician has never told me what a good job these other people are doing.  He has never looked at the lab results and said, “We should be very grateful for these people. They are doing a great job and have come up with great results which make our job easier.”  They never say such things.  They always look at the results warily with a look of trepidation and fear. They are always suspicious. From this we can conclude one thing. Good care depends on a team working together. Another thing we can say is that good care depends on equipment that is understood and that works.

One of my favorite days was the day I had ultrasound on my arm. We argued and fought with people and their cars in order to get a suitable parking spot. We finally parked the car and sat in the waiting area downcast and wondering about a lot of things.  I was called for my scan which was done incredibly efficiently and effectively. I sat there overwhelmed by the quality of the machine and the pictures of my arm. I sat there thinking how far the medical system had come.  I was stunned. After the scan we exited the building in order to recommence our battles with the underwhelming parking system.

Sometimes my care has been diverted. It has lost sight of the ball game. Sometimes because of me. Sometimes the clinician. Sometimes for obscure nebulous reasons. At the moment the main issue is what happened on the 7/10/15. It is now five months later. Why did I collapse? Why did I become unconscious for two weeks? How do I prevent this happening again? According to the neurologist there are two possibilities.

Number I: I fell, hit my head (involving damage to several blood vessels) and suffered an acute traumatic brain injury.

Number 2: Cerebral Amyloid Angiopathy had weakened some cerebral blood vessels causing several blood vessels to haemorrhage causing me to fall. 

He doesn’t mention the third possibility which is the most likely.

Number 3:  Both Number 1 and 2 combined and occurring together.

I may have completely misquoted him for which I apologize. It is now five months since the beginning of my illness and he has ordered some MRI’s and lumbar punctures to try and diagnose the cause of my illness.

The last 5 months has taught me one thing (actually it is more than one thing). It is up to me to manage myself. This means I work with the professional staff where possible and where necessary. It is a collaborative effort involving a multitude of people but I am the one who needs to know everything.

My next task is to look over my lumbar puncture test results and see what I can deduce.  I have finally obtained copies of my test results (it was a long story). The main tests are for levels of TAU in my CSF.

I will go into more detail about TAU proteins in my next posts.  They are very interesting.