The Beginning.

How I came in contact with Hemianopia.

(Revised/Updated on July 26, 2020)

(First an introduction.)
When I was 9 months old, during a regular checkup, they discovered a noise around the heart.
Every year or every other year, I had to go for a checkup.
Just to keep an eye on it.
Only when I was 12 they discovered it was a leaky heart valve.

Because I was still young and growing they did not want to do anything about it.
I just had to listen to my body and rest when I was tired.
And every year I had to have a checkup.
In 2005, at that time I was 39, I had an open heart operation and they replaced the leaking heart valve with a mechanical artificial valve.

This was because they had discovered that the valve started to leak more.
As a result of this, the heart had to work harder to be able to still pump the right amount of blood through the body.
This also caused the aorta to be stretched wider.

To prevent the aorta from bursting, they had to replace the leaking valve and a part of the aorta.

The operation was successful and I got the warning to be careful and try to prevent infections.
If I got a wound or something had to be done that would involve blood, then I had to take antibiotics.
Bacteria in the blood would be dangerous.
I also got a list of medications I had to take every day.

Things went ok, until 2012
Just a few months after the summer holiday, I start to cough a lot.
Sometimes I only could say a few words before I burst out in coughing.The doctor did not pay much attention to it.
She said that it could be the whopping cough and not much could be done about it.
This went on for 3 to 4 months.
Can you imagine how tired you can get for this?

Mid-December 2012 I went back again because I was getting tired of it and I was sent to the hospital for a blood check.
They told me it would be maybe after Christmas before they would have the results.
Then suddenly on December 22 in the morning, I got a call from the hospital.

They told me to report at their first aid desk in the hospital.
When I arrived in the hospital, they told me that they had discovered a bacteria in my blood and that was the cause of my coughing.
They had counted the bacteria and it was very high.
It was so high, that they did not allow me to leave.

They had put me on an intravenous drip with antibiotics.
I was told that this would take 6 weeks.
Can you imagine, just 3 days before Christmas, and being admitted to the hospital?
This also meant that for New Year, I had to stay in the hospital.

Very annoying, but what else can you do.
I received a new dose every four hours.
When this bottle was empty, then they switched back to a salt and water solution.
This was to keep me hydrated.
Even in the middle of the night, they came to switch bottles.

January 1, 2013

This was the month that started the change my life.

My wife had celebrated New Year with me in the hospital and left around 1:00 am.
I know I had fallen asleep but I woke up because of pain behind my left eye.
It was terrible.
I tried to go back to sleep but it was impossible.
I also tried to sleep in a bit of upright position and I think I slept for a few minutes.
When I woke up, the pain suddenly moved from behind my eye upwards and I got a terrible headache.
By now it was maybe around 3:00 or 4:00 am.

Because of this terrible pain, I called for a nurse.
When she came she saw I was in pain and called for a standby doctor.

The doctor asked me several questions and I was rushed off for an MRI scan.
When the scan was done, they told me that I just had a brain hemorrhage.
I was in shock and unbelief.

After this, I was placed on a different floor in a single room.
The pain I had was so much, it was something you wish you would never go through again.
To ease the pain, they gave me morphine.
This was helping a little bit.

During the day, I could not stand for any noise, sounds, or light.
It was like having a migraine.
Only after maybe two to three days, it was slowly getting better.

I was in observation for a total of 14 days.
After this, I was brought back to the floor where I was before.

January 16, 2013.

Two days after that, I think it was around 10 in the evening, again I suddenly had the same pain.
First behind my left eye and after that, it had shot up.
So I called for a nurse and she called the doctors.

And maybe you guessed it, I was rushed off for an MRI scan.
Brain hemorrhage number 2
Maybe there was some kind of luck in it because it was on the same spot as last time.
So there was no extra damage done.

The next day, they were talking about that maybe they would move me to a different hospital.
Because the pressure in the brain was increasing.
If it would not decrease, they would have to do some kind of brain surgery and try to release the pressure.
But by luck, the pressure dropped slowly.

I had to go through the whole circle of pain again.
And again I was in observation for around 14 days.
During this time they had tried to figure out what could have been the cause of this.
And they discovered that a small piece of bacteria that had been growing on my mechanical heart valve, had come lose and ended up in my brain.
Causing this headache and damage to the brain.
But the damage was only discovered later.

During the first 14 days in observation, I noticed that I had a strange problem with looking at things and reading.
Or even looking at people.
For example, if I looked at someone, I only saw the left side of their face.
Only when I looked further to the right, I could see their whole face.

It was very strange.
Also if I was looking at some writing, I only saw the first two to three letters of a word.
I was not able to see the whole word in one go.
Very strange.

During my second observation, they came for therapy. 
I told them about the things that I noticed.
They tried to see what I could see and what not and how I was able to handle the situation.
After this, they told me what it was that I had.
It was a very difficult word and it took me quite a while before I finally understood the word.

They called it Hemianopia.

February 2013.

Because of the two times brain hemorrhage, the doctor decided that they had to do a heart operation.
The bacteria infected the valve, so it had to be replaced.
On February 18, 2013, I had my second heart operation.

Normally this would take 4 hours, but for me, it took them 8 to 9 hours.
They had to remove the old valve and clean the area around it.
Because of the bacteria.
The part of the aorta they had replaced the first time, they also had to replace that.

After the operation, they noticed that the heart was not coming back to its normal rhythm/speed. They thought that maybe during the operation, that may be the sinus knot got damaged.
So they had placed an external pacemaker.
It was a box that I had to carry around me in a small bag, hanging around my neck.

Because the heart did not come back to its normal speed, I was tired very quickly.
If I just walked maybe 50 to 100 meters, I was tired.
They told me, that sometimes within 7 to 9 days, the heart will recover and go back to its normal speed.
But for now, my heartbeat was only around 40.

Even if I walked, it did not go any higher.
If this would not change within 7 to 9 days, then I needed a pacemaker.
Another shock for me.
I am too young for this.
A pacemaker is for old people.

March 2013.

After 9 days, there still was no change.
On March 1, they had placed the pacemaker.
And during my first walk, after they had placed the pacemaker, I already noticed the difference.

Then on March 7, 2013, I was finally going home.
But this was short-lived.
Two days later, I did not feel well.
Heavy heartbeat and fever.

I checked with the hospital and told them about the previous 3 months.
They requested me to come back so they could check my blood.
And what do you think, I had a urinary tract infection.
The doctor thought that maybe it was caused by the urine catheter that they had placed after the heart operation.

I had to stay in the hospital again and got antibiotics again.
And was told that I had to stay for one week.
In total, I spend 3 months in the hospital.