Is your blood in that white cable?
Can you take a bath?
What is inside of your black bag?
I have received many questions about my artificial heart ‘Heart mate Ⅱ‘ since I had the operation 4 month ago. Someone even asked me; ‘ Where is your heart now? Is it in your black back?’ haha
No wonder people have questions, the artificial heart was only introduced a few years ago in Japan. Not many operations have been performed so information about artificial hearts compared to western countries is limited. Before I got this rare heart disease ‘Dilated Cardiomyopathy‘, I never knew anything about it or about LVADs (Left Ventricular Assist Device=Artificial heart).Therefore, I would like everyone, who reads this blog, to know about my everyday with this devices.
Firstly, this is what an artificial heart looks like. Oh I can’t believe such a huge thing is in my body…
This is what inside of the black bag which I have to always carry with.
The white elliptic is called a System Controller and the 2 grey squares things are batteries. These all weigh about 3 kg. The white cable, is called the Drive Line. It goes inside my stomach and sends power to the device which is stitched to my heart.
The picture below is my battery charger and Power Module and Display Module.
This is my average daily routine.
Getting up in the morning.
When I get up, I have to check the monitor on the machine first. I must check all figures are within safe guidelines. Next, I have to push the ‘self test’ buttons, to check the Power Module and System Controller are working properly. During this time a very loud alarm will ring and lights will flash. If something is wrong, I must call the hospital immediately.
Then, I have to change my cables to the batteries from the Power Module which is connected to the mains. This allows me to become mobile. Again, loud alarms will ring to warn me that I am disconnected to a power supply. Failure to connect the power cables efficiently will result in the alarms to continue to ring. No power, no life. Sometimes I feel like an iPhone which needs to be charged.
↓During the day
I have to carry this black with me all the time during the day. The white drive line is very short so that I have to be careful to avoid it touching any obstacles or catching on things. When I go out, I use a different type of bag. This bag is like a gun holster. I use it for going on long walks as the weight is distributed evenly. Because of Osaka University hospital’s rule I must carry 2 spare batteries and a spare System Controller with me at all times. This is another 3kg.
In Japan, it is common that people have baths or go to hot springs to relax in winter. However, I am not allowed to do that. I am not allowed to submerg my drive line or chest under water. I can take a shower but I have to put the devices and batteries into a waterproof bag and I have to cover my stomach with a waterproof seal. During the shower, I always have to pay attention that the bag does not drop or pull my drive line and that water does not get inside… . After a shower I change to the black bag again. This process is annoying for me as it takes about 40min to have a quick shower. Now I’m starting to hate showers…haha
I have to clean my stomach every day to prevent infection. If I get a really bad infection, the worst case senario is that I would have to change the devise inside or I may even die.
Going to bed
I change the power cables back from the batteries to the mains via the Power Module. Once I connect to this device I cannot move far so I prepare everything I need before I go to bed. But, if I need anything, I always say to LIN「Please pass me that one. I can’t move, because I’m connected!!」
During the night, I can sometimes hear the beat of my heart and motor sounds of the device. Lin can hear it often and said it sounds like ‘a PC has been left on and is over heating.’ By the way, I can role only little bit to my right side while sleeping, because of the short drive line which comes from the left side of my stomach. It’s stressful..
This is the my daily order. It was difficult before but now I’m used to it. I feel that humans can live through any situations, if they have to.
Artificial hearts are for serious patients who might not be able to survive with only medicine until they have a transplant. Apparently I am one of them. But we never give up on life.
After surgery, I felt like my heart had recovered and I can go out now. I really appreciate the improvements of medical technology. However, actually, my heart has not recovered, it’s working well just because of the support of the device. The only way to cure this illness is by a heart transplantation. There many patients on the organ waiting list who don’t make it to their transplant, because of the incredibly long waiting list compared to other countries, ( I was said it would take about three to five years. )
I am trying to find out how I can make a difference to the problem of the long waiting list in Japan. And why is Japan so long and what is the difference between other countries. Lin will be addressing these questions soon in an article. In the meantime if you know something about your countries, please leave a comment.
This is a small tiny step, but I would like to introduce my illness to people. And I would be happy if this blogs helps the patients who are willing to have an artificial heart. LET’S FIGHT TOGETHER!!