A Bacteria Changed My Life.
December 22, 2012, until March 16, 2013, a time I cannot forget/ignore.
December 22, 2012.
There are some dates in your life, you will never forget. The day you got married. The day your first baby was born. But for me, there is one more date. The date that changed my life. A starting date that would have a big impact on my life. Or maybe say our lives.
Already for three months, I was coughing the whole day. Only when I did not say anything, I was not coughing. But as soon as I started to talk I burst out coughing. Also in the evenings, I was very tired. And at night, in bed, I was sweating like crazy. Like I was having a fever. At first, the doctor told me that it could be whooping cough and there was nothing she could do for it.
In the beginning, you just think that it will go away. But after a few weeks, you get annoyed with it. You cannot talk normally or have a good sleep. It also looked like it was getting worse by the week.
So after insisting at the doctor that things are really not good, I finally got a note to go for some checkups in the hospital. This was around December 19, 2012. At first, they only took some blood and urine samples and an x-ray. It would take maybe a week before they would have the result, so it would be after Christmas before they would call me.
Then in the early morning of December 22, 2012, I got a call from the hospital. If I could come to the hospital and report at the emergency desk. Okay? We just got dressed and had a quick breakfast, before we left for the hospital. We did not prepare anything because we had no idea what it was all about. I just thought that maybe they just wanted to do more testest or maybe they already had some results.
Once at the hospital, immediately I was admitted and they told me that they had discovered bacteria in my blood. Because I have a mechanical heart valve, this was dangerous for me. They gave me an antibiotic intravenous drip. I needed this for six weeks, 24/7. I was not allowed to leave anymore. Panic. What now? How about Christmas and the family plans and dinners we had? And how about New Year? Everything was On-Hold.
In the following days, they did more tests, and x-rays, and echos. Just so they had some idea of what possible damage there could be. It was discovered that the bacteria already had attacked my mechanical heart valve and started to grow on it. The hope was that the antibiotics would stop it.
January 1, 2013.
I spend Christmas in the hospital, while the family was at home. Not a nice situation but there was nothing much to do about it. This also meant that I would celebrate the New Year in the hospital. The nurses already informed everyone that it was possible to have one visitor over to celebrate the New Year. I was a little bit lucky because I was in a one-person room, so we had some privacy. My wife had come and stayed until maybe 1:00 am and then left for home.
Maybe around 4:00 am, I woke up with a terrible pain behind my left eye. It was like someone was sticking needles in there. I still tried to go back to sleep again and hoped that the pain would go away. Suddenly the pain had shot up and I got a really terrible headache. The pain was unbearable. It got so bad, that finally, I decided to call for a nurse. When she came, she saw that something was not right. After some questions, she called for the standby doctors. After a few more questions and a very quick check, I was rushed to the MRI room.
After the MRI, the blow came. I just had a cerebral hemorrhage. It felt like my world collapsed. I remembered my grandmother who also had this and half of her face was paralyzed. I was hoping that this would not happen to me.
I spend maybe around 4–5 days in a close observation room. After that, I was brought to a regular room. During these days I discovered something strange. It was like I had problems reading. I could not see words in one go. Normally, if you look at a word, you can see what it is. For me, every word, I only saw the first two to three letters. Only after looking a little bit further to the right, I could see the word and I knew what it was. Also, if I looked at people, I only saw their right side of their faces. I did not see the whole face. It was all very confusing. They told me that I had hemianopia. Or in simple words, half sight blindness. I had this in both eyes.
A small piece of bacteria had come loose from the mechanical heart valve and traveled through my blood veins, to my brain. There it had caused the hemorrhage and damaged the part that is taking care of the right side of my vision. They were hoping that with enough rest, things could heal.
January 16, 2013.
14 days after the hemorrhage, they brought me back to the cardio department. Only two days after that, I got the same pain again. First, behind my left eye, and a few minutes after that, it had shot up again. This all was around 10:00–11:00 pm.
I called for the nurse and immediately I was rushed off to the MRI, again. I was just hoping that it would not be the same again. But, what else could it be? And it was the same again. The same spot again. But luckily, not more damage was done.
The next day, they were also talking about that maybe they would send me to a different hospital. The pressure was building up in the brain and this was a bad sign. If it would build up further, then they would have to open the skull and see how they could relieve some of the pressure before it could do any further harm. But I was in luck. In the following days, the pressure had dropped.
Again, hemorrhage, they brought me back to the cardio department. They did several tests to see how the heart valve is and if it could be the cause of the hemorrhage. During the tests and checkups, it was found out that the bacteria was heavily growing on the heart valve. And they suspect that a small piece of bacteria got loose and ended up in my brain.
After this discovery, it also was decided that the best thing they could do, was to replace the damaged heart valve.
February 18, 2013.
All this time I stayed in the hospital. At one point they had mentioned that if I wanted, I could go home and come back when it was time for the operation. My wife and I decided that it was better to just stay in the hospital. Just in case something would happen again. Then at least I was already there and immediate action could be taken.
The date was set for February 18. I would be the first that day. The surgeon told us, that and normal operation like this would take around 4 hours.
That day, my wife stayed in the hospital, waiting for the result. It was already afternoon and she still did not hear anything. She spent some time just waiting and walking around in the hospital. When it was already late afternoon and she still did not hear anything, she went to a small chapel they have in the hospital. To find some peace and comfort.
While she was there, they finally called her and told her that I was okay and in the ICU for recovery. The surgeon was looking for her, to tell her how things went. He told her again, that this would normally take only 4 hours. But when they reached the heart valve, they discovered that it was heavily damaged. Also, the surrounding area was affected and had to be cleaned.
Once I was back in a regular room with other patients, I found out that wires were coming out of my chest. They were attached to a small case. I had to carry this with me, around my neck. I thought it was something to monitor my heart but I soon heard that it was an external pacemaker.
The reason for this, I found out very soon. After the operation, it was discovered that my heartbeat did not get back up to speed. A normal heartbeat would be around 60 beats per minute. Mine did not go higher than 50 beats per minute.
When I was able to get out of bed and tried to walk around a little or just wanted to go to the toilet, I was exhausted. It was maybe just a 10 to 20-meter walk, but it felt like I had walked several miles. The reason for this was, that my heartbeat still was not going any higher than 50 beats per minute. Normally if you walk or move, your heart rate should go up. But not in my case.
I was told that a small risk of the operation would be that they would maybe damage a small of the heart. They called this the sinus knot. This knot is sending pulses to the heart muscles to get the heartbeat going. And during the removal of all the bacteria and the surrounding area, most probably they had touched it and the sinus knot was not able to send a signal to the needed parts. The only way to fix this was to place an “internal” pacemaker.
March 1, 2013.
Before they would place an “internal” pacemaker, they just wanted to make sure that the heart would not recover by itself. According to a specialist, it was possible that within 7 to 10 days, the heart would recover and the sinus knot would work properly again. So for now, we had to wait and hope that this would be the case.
And maybe you already could guess it. This recovery did not happen. So on March 1, 2013, I would get a pacemaker. I know that this would be a good thing. Because at least my heart would work “normal”, but in the back of my mind, I had a hard time accepting it. My idea was that only old people needed a pacemaker. And I was not that old yet. I was only 47 at that time, so way too young for a pacemaker.
Several specialists and nurses in the hospital talked to me about it and gave me information booklets. Just to make sure that I knew what it was and what it would be to me. Maybe it was also the thought of going through one more operation in a short time. After all, I already had been through a lot during that time. But I realized that it would be best for me. I had to accept it. Not easy.
So March 1 was the big day. I was the last for that day. At the beginning of the day, it was not known when it would be my turn. And in preparation for it, I had to be sober. That meant, no food, no drinks. Then waiting for at least 10 hours, is a very long time. And when I am hungry, I get grumpy. But I think we all know this feeling. So I was relieved that when it was around 16:00, that it would be my turn next.
The location of the pacemaker would be in my left shoulder, at the front. I was very nervous. I was given some drugs to calm me down. I only got local anesthesia. They didn’t give full anesthesia, because, during the whole procedure, they want to check with you if things are okay. A disadvantage of this is, that you can hear and “feel” almost everything they are doing. You feel all the pushing and pulling.
After they had placed the pacemaker, I could feel the difference. I was able to walk to the toilet and not feel tired. I also could walk down the hallway without any problem. So it looked like I was almost going home.
After a few days of observation, just to make sure that the pacemaker was working okay and that I did not have any other problems, I was able to go home. Finally, after a long wait, it was time.
Once home, things felt strange. Like I was a stranger in my own house. It took a while to get a little bit of rest and peace. But this was short-lived.
After two days, I felt strange. A heavy heartbeat and my temperature went also up slightly. Just to make sure, I called the doctor and the hospital. I immediately had to report to the hospital again. After some blood tests and a urine check, they told me that I had a urinary tract infection. I had to stay again. Get antibiotics again, for at least a week.
My spirit was crushed, again.
The antibiotics did their work and after a week I could go home again.
It was several months after this all had happened, the doctor told the name of the bacteria. Things went a bit fast and I could not remember the name anymore. After many checkups and tests during my stay in the hospital, they were not able to find out how these bacteria had entered my body. Or where it could have come from. This will be a mystery that will never be solved.
So how did this bacteria changed my life?
It had damaged my artificial heart valve. It caused my hemorrhage, which led to hemianopia. As a result, I have problems reading. It also was the cause for a second heart operation, with the result that after that I needed a pacemaker. All of this resulted in that I am not able to work anymore. But there are still many after-effects. I will tell you more about them in future posts.
During those three months in the hospital, I was crushed, mangled, and spit out by life. All my hopes and visions for the future disappeared. I had to start all over again. I had to rethink my future. Life after the hospital was and is still tough. I am limited in my doings. I had to learn again how to live with some of the limitations I have. And almost every day I am confronted with it.
In another post, I will tell more about how it is for me to live with hemianopia.