Complications arose during the operation. Matthias’ heart was stopped in order to perform the surgery, and a heart-lung machine was used to keep his circulation going. After the procedure, his heart is no longer capable of pumping enough blood on its own - the doctors aren’t able to wean Matthias from the heart-lung machine. It’s a life-threatening situation.
In order to stabilize Matthias’ circulation after the operation, he’s put into an artificial coma and connected to ECMO (Extracorporeal Membrane Oxygenation), which is a modified, miniaturized heart-lung machine that can be used to support heart and/or lung function for a few weeks so doctors have time to determine how to save his life.
Unfortunately, the prognosis that the doctors give Matthias’ family isn’t good. Since Matthias’ heart is unable to recover from the surgery, he’ll need a donor heart. It’s a shock for everyone involved. The average waiting period for a donor heart in Germany is several months* - And in the condition he’s in, Matthias may not have that kind of time left. Matthias is transferred to the Regensburg University Hospital. The Regensburg facility has many years of experience with mechanical circulatory support systems.
Implantable continuous-flow systems only approved for left ventricular support were not an option for Matthias, because neither side of his heart was capable of pumping sufficient blood through his body. Instead, Prof. Schmid, Director of the Department of Cardiac, Thoracic, and Coronary Vascular Surgery at Regensburg University Hospital, recommends implanting the EXCOR® Adult system. The paracorporeal, pulsatile system is especially designed and approved for biventricular circulatory support. In this situation, it is the only option for keeping Matthias alive while he waits for a donor heart.
Below, Matthias describes this time and his experience with EXCOR® Adult.
My health status looked pretty hopeless back in May 2019. The doctors said I could either stay on the ECMO and wait for a donor heart, although its use here is limited to a certain period, or use the Berlin Heart EXCOR® and bridge the waiting time in a tolerable condition.
Then the EXCOR® was explained to me and presented in a few images. It was a great shock at first. I thought, how can someone have a decent quality of life with two blood pumps on their abdominal wall? However, I still decided to go for it. The shock really set in after I woke up from the anaesthetic. At first, a "reasonable" quality of life like this was unthinkable.
However, my condition improved with each day. After just a few days I was able to go for my first short walk, which would have been unthinkable on the ECMO. My condition continued to improve over the next few days.
After six weeks, I was able to leave the hospital. My condition also improved during the subsequent period of rehabilitation and in my home environment. It improved so much that, two months later, I was able to return to work (office work only) for four hours a day.
My quality of life was considerably better than I ever expected. It was even better than I ever would have dreamed of before. The EXCOR® not only allowed me to work, but also to go for short walks with my family. Of course, you always need to have the driving unit with you and always be connected to it with tubes, but it is possible to do some things within this radius of about two meters, such as playing darts or playing table football with the children, everyday things such as emptying the dishwasher, laying the table or similar tasks, and even minor physical activities are not a problem.
Years ago I had to walk on crutches for 12 weeks. I found the limitation to my quality of life considerably worse back then. You can't do anything while using crutches. With the EXCOR® you have at least one hand free at all times, which makes doing everyday activities much easier.
It has to be said that life with the EXCOR® is certainly not easy: regular dressing changes, climbing stairs and many other things make everyday life much more difficult. Having said that, it's nowhere near as bad as you first imagine. In your usual environment, you can wait for a donor heart while retaining a moderate level of mobility. On top of this, the body has a chance to recover and regain some strength, so you are in a stronger starting position when you undergo the serious heart transplantation surgery.
In retrospect, using the Berlin Heart device was definitely the right decision. Firstly, it gave me my life back and then it also gave me a degree of quality of life that made it possible for me to do many things again. Also, you know all the while that it is only a "bridge" until the transplantation takes place.
How am I doing today?
After almost nine months with the EXCOR®, in February 2020 a suitable donor heart became available. The transplantation was largely problem-free and I quickly regained my strength. Just three weeks after the surgery, I was able to go back home.
Today (May 2020), I am doing pretty well. I go for long walks almost daily, sometimes covering five or more kilometers. I haven't had any problems with the new heart so far, it works brilliantly. Of course, the routine tests are still very frequent and the medications haven't been stopped 100%, but my condition is improving week on week. Living with a donor organ does of course mean a huge change in lifestyle, but it allows you to lead a relatively normal life again.
I hope my condition continues to stabilize so that perhaps I can return to work in a couple of months.
You can find a video showing Matthias' life on EXCOR here. Please note, that the video is in German, but you can add the english subtitles via the setting button on YouTube.
The access to some or all shown products may be restricted by country-specific regulatory approvals. The use of EXCOR® VAD for adults, RVAD-support, Excor mobile and EXCOR® Active is not FDA-approved.
* See www.organspende-info.de