This patient's story is out of the ordinary. He came to the Lausanne University Hospital at the age of three, in the early summer of 2022, to be treated for cancer. A few weeks after his hospitalization, he developed severe heart failure as a result of an infection. Due to his oncological treatment, the child could not be put on the waiting list for a heart transplant. As his heart was no longer supplying his body with sufficient blood, the boy received a biventricular heart assist device (BVAD) - Berlin Heart EXCOR^®.

Multidisciplinary care

The pediatric cardiac surgery team at the Lausanne University Hospital implanted EXCOR^® as a BVAD to support the heart with a potential transplant in mind.

This little boy was hospitalized on our unit for a year," says Dr. Maria-Helena Perez, Head Physician of the Lausanne University Hospital's Pediatric Intensive and Intermediate Care Units. “Over time, we developed a strong bond with him and his family. To give them more freedom, we taught the parents how to familiarize themselves with the machine. Thanks to this, they could leave the unit while remaining within the perimeter of the Lausanne University Hospital."

Signs that the heart was recovering

A few months after the EXCOR^® implantation, the team and the parents saw signs that the heart was recovering. "During a check-up ultrasound, I saw that a competition was developing between the heart and the machine. That's when the idea of weaning the child off life support, without the need for a transplant, began to germinate," explains Dr. Stefano Di Bernardo, pediatric cardiologist and head physician of the Woman-Mother-Child Department at Lausanne University Hospital. The parents agreed to try to wean the BIVAD support.

CHUV activates its network for a challenging operation

“We decided to remove the machine and keep the native heart," explains Prof. Reza Hosseinpour, chief physician and pediatric cardiac surgeon at Lausanne University Hospital.

To carry out the bi-ventricular weaning operation in the Lausanne University Hospital's operating theatre, Prof. Hosseinpour was accompanied by surgeon Fabrizio De Rita, a specialist from Newcastle (England) who is very familiar with the procedure. "His presence was a great help. He accompanied me and showed me the pitfalls to avoid, but none of this would have been possible without the help of the whole OR team, the anesthetists, perfusionists, instrument technicians and ward assistants", says Prof. Hosseinpour.

The operation lasted an entire morning and was a success. The child was able to leave intensive care just a few days after the operation and return home a month later. In remission from his cancer, he is now being treated as an outpatient at the Lausanne University Hospital. “We went through a terrible rollercoaster, but we kept our faith and fought through it all," says his dad. When we got home, our son went straight to his room and started playing with his train, as if he'd left it the day before."

If you would like to read the complete original article, please click on this link to the homepage of the Lausanne University Hospital:

https://www.chuv.ch/fr/chuv-home/espace-pro/journalistes/communiques-de-presse/detail/une-premiere-au-chuv-un-enfant-place-sous-assistance-cardiaque-bi-ventriculaire-a-pu-etre-sevre-de-la-machine-sans-greffe-cardiaque

From left to right: Dr Sylvain Mauron (Associate Pediatric Anesthesiologist), M. Guillaume Besse (Berlin Heart Clinical Specialist), Dr. Maria-Helena Perez (Head Physician Pediatric Intensive and Intermediate Care Units), Dr Fabrizio De Rita (Pediatric Cardiac Surgeon), Prof. Reza Hosseinpour (Senior Physician, Head of Pediatric Cardiac Surgery), Dr Stefano Di Bernardo (pediatric cardiologist and head physician of the Woman-Mother-Child Department) and Mr Philipp Zrunek (Berlin Heart Clinical Specialist).

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.

When asked what my quality of life was like with the EXCOR® BVAD, I often reply: "I once had to walk with crutches for 12 weeks, which meant I was more restricted in my daily activities than with the EXCOR". In other words: 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.

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, over 3 years later, I am doing extremely well. I'm back to a normal life. Of course I had to make some changes here too, especially due to the immunosuppression, but I feel fit and healthy. Or as I often say: "If I didn't know about my transplant, I wouldn't feel it".  Looking back, the path via the "Berlin Heart" was absolutely the right one.

Many thanks to the whole Berlin Heart team for their support and the great technology.

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.

Romina's life began in 2012 with a turning point. Two weeks after her birth, she showed the first signs of oxygen deficiency, turned blue and was given oxygen. 

The family was referred to the Munich Heart Centre. There it was discovered that Romina's little heart was not pumping hard enough. The cause: an extremely rare genetic defect. However, her condition improved significantly for a long time thanks to medical treatment.

The years passed, but Romina's condition deteriorated significantly in spring 2021. Even her beloved cycling was no longer possible. She lost weight, became increasingly pale, and had to be admitted to the pediatric cardiology department, at Ludwig-Maximilians-Universität in Munich.

After extensive examinations, it became clear that Romina urgently needed a donor heart.

Together with the family, it was decided to implant an EXCOR® Pediatric System to bridge the gap until a donor heart could be found. The EXCOR® pump supports the heart and helps to ensure that the body is supplied with sufficient oxygen again. With this support, Romina regained her strength and quality of life. Thanks to the new EXCOR® Active drive, she was able to spend hours walking around the hospital grounds with her parents soon after the implantation. She often bounced happily around the hospital with her EXCOR® Active, delighting the nursing staff and other patients. The mobile drive gave her more freedom of movement and therefore more self-determination. She was able to have fun and pursue her interests again.

The waiting time for a donor heart is long in Germany and Romina and her family also needed a lot of patience until a suitable donor heart could be found. In July 2022, after 388 days, the time had finally come! Romina received a new heart transplant. No one in the family will ever forget this date!

Romina recovered quickly from the effects of the heart transplant, partly because Romina prepared for the moment of the transplant with a lot of exercise and activity with the nursing staff and her family. After a few weeks, Romina was discharged home with her new heart.

Today Romina lives the normal everyday life of a teenager with school, sports and hobbies and she is growing strong - and she is full of joy!

"Actually, any child is able to make it," Romina, a former patient, answers hopefully when asked if she has a message for all Berlin Heart patients.

At the age of 12 she was supported by an EXCOR^® Pediatric. “This mechanical heart has played a major role in my life and I have many memories of that time. I am very grateful that this technology exists and that the therapy was so successful".

Already as a child, Chantal was very athletic, and played a lot of tennis and hockey. But at the age of 11, she suddenly was becoming no air just climbing the stairs. The cardiologist sent her straight to the hospital in Bremen. Her left ventricle was found to be inflamed and she was put into an artificial coma. The situation was very dramatic, and the doctors did not believe that she would survive the next night, and told this also her parents. Chantal survived, but she did not feel well. "I often suffered a lot of pain so that I had to spend days in bed motionless and almost completely devoid of energy" she recalls. After six months of treatment in Bremen, she became progressively worse and was transferred to the German Heart Center in Berlin (DHZB). “On the very first evening I suffered ventricular fibrillation after which a mechanical heart was implanted in an emergency surgery" says Chantal.

"Apart from the regular visits of a technician, who checked the mechanical heart, at first all I noticed was the clicking sound of the device. After transfer to the normal ward, I began to get more mobile. After three and a half months of waiting, I finally received a heart transplant. As I slowly regained my consciousness, it was strange for me to live without my mechanical heart. I almost felt empty without my device and that steady clicking. At night, no alarm woke me because I accidentally bent the hose while sleeping. I really had to get used to it.”

After her release, Chantal was educated at home for half a year because of her increased risk of infection, before she could then return to her normal school. Today she is an athletic young woman who, time permitting, enthusiastically plays golf and tennis or goes skiing. In addition, she also likes to play golf and not only skies enthusiastically in winter, but also works as a ski instructor. “I've been taking part in transplant patient competitions for six years" says the 26 years old. “My greatest achievements were the World Championship title in Golf 2013 in South Africa and 2015 in Argentina, as well as the gold medal in Parallel Slalom at the Winter World Championship 2015 in France.” Most recently, she participated in the World Transplant Games in Perth, Australia and is already looking forward to the World Championships in Dresden 2025.

Her involvement in organ donation support has also been important, for which she has already appeared in the TV shows "Markus Lanz" (ZDF), "3 to 9" (NDR) and "Good morning Germany" (RTL). “I want to show people that this can happen to anyone and that your life might suddenly depend on a donor organ, just as happened with me. An organ donor can save up to seven lives! I want to use my fate to help save the lives of as many people as possible through donor organ support."

On our Youtube channel, you will find an exclusive video interview in which Chantal talks about her remarkable experience after heart transplantation with the help of the EXCOR® Pediatric: www.youtube.com/channel/UCWjvfgzjFW_w4sz5505jRNA

Andreas coped his everyday life with a prosthetic leg, but his heart performance was severely limited as a result of the chemotherapy. At the age of 18, his cardiac output was still only about 30 percent. Not much, but enough to live on.

In the following years, Andreas initially did not notice the rapid decline in his cardiac output. 

March 2019: Andreas is writing the intermediate exam for his training as an IT systems electronics technician and feels increasing shortness of breath. The doctors diagnosed pneumonia and a cardiologist examined Andreas' heart. The heart failure became acute and the pumping capacity had already dropped to about 10 percent.

This is too little for normal everyday life. Andreas suffers from an inflammation of the heart muscle, a so-called myocarditis.

At first, Andreas was treated with medication - but without success. To prevent sudden cardiac death, a defibrillator was implanted. Even for this form of therapy, Andreas' heart was already too weakened and his organs failed. 

Andreas was connected to a heart-lung machine (ECMO = Extracorporeal Membrane Oxygenation) and transferred to the University Hospital of Munich (LMU) the same night, where further therapy options were discussed. The doctors decided to implant a biventricular EXCOR^® ventricular assist device to support his heart. 

The operation went very well and Andreas regained his strength. His health improved visibly.

Andreas spent a total of 10 months on the EXCOR^®. During this time, he was even able to pursue his hobbies again. Andreas takes photographs and makes videos in which he records his everyday life in the clinic. Andreas starts his own YouTube channel: happy2Balive. 

In his videos, Andreas describes his everyday life with the EXCOR^® very vividly and thus gives courage and hope to many heart patients in a similar situation.

He gains mobility and can prepare himself for a future heart transplant through targeted training.

In February 2020, Andreas finally receives the long-awaited news. A suitable donor heart is available. 

The heart transplantation goes without complications. Due to his disability, the recovery process was more difficult than it would have been for patients with two healthy legs. Andreas first had to learn to walk again. But after a few months of daily training, he was fit enough to be transferred to a rehabilitation clinic. 

Now Andreas is back home and doing well. He enjoys meeting friends and continues to pursue photography. 

Dear Andreas, we wish you all the very best for your future!  
 

For the past 199 days, Greta had survived with the support of Berlin Heart’s EXCOR^® Pediatric Ventricular Assist Device while she waited for a heart transplant. 

Just one month earlier, her big brother had asked Santa for a heart for his sister. Those sirens meant he was finally getting his wish.

According to her mother, Greta was so excited to say hello to the world that she was born a little more than 12 weeks early. 
During her first days in the hospital, she was diagnosed with cardiomyopathy, a condition that affects the heart. In September of 2019, she was stable enough to go home with her family for the first time. 

For 9 months, Greta watched the world through her big, bright eyes as she grew and absorbed the world around her. She was a happy baby who brought joy to every person she touched, especially her big brother, Liam. 

But by June 2020, her mother noticed that she wasn’t her usual cheerful self. She returned to the hospital by ambulance in heart failure.

After a week of unsuccessful medical treatment, it became clear that a heart transplant was Greta’s best chance for survival. With no immediate availability of a donor heart, her medical team quickly made the decision to implant the Berlin Heart to support her while waiting on the transplant list.

“It gave her a great quality of life while she waited,” said her mother, Jaime. “Greta loves to be social and explore. She’s very into details. She loves books and going on walks.”
With the Berlin Heart, Greta was able to enjoy her favorite things again. She did so well, her mother said, that they were often asked questions by other families with children with heart problems.

“This experience has been the hardest of our lives,” her mother said. “But it made me so happy to see her so well taken care of. I’ve learned so much! My advice to other parents in this difficult situation is to ask a lot of questions. If you don’t understand, ask again.”

Greta is recovering well after her transplant and now, after 225 days in the hospital, she is back home with a new heart.
 

Camilo was born in Buenos Aires on November 25, 2015. Even before his birth, in the 5^th month of pregnancy, he was diagnosed with heart failure. 

Due to dilated cardiomyopathy, a pathological enlargement of his heart muscle, Camilo's physical performance was limited. Camilo could not run, jump and romp like other children his age. He preferred to play with his building blocks, toy cars and trains. 

Despite his severe diagnosis, Camilo could be treated with medication on an ambulatory basis for almost 5 years. However, in April 2020, Camilo's health worsened, he was always tired and increasingly weak. Camilo had to go to the hospital and the doctors there did not have good news. Camilo's small heart was too weak and he urgently needed a donor heart. 

In fact, he soon got better and Camilo was even allowed to go home with his parents. But then his condition suddenly became acute, Camilo could no longer breathe. In the emergency room of the hospital, Camilo suffered a cardiac arrest. Doctors were able to resuscitate Camilo and he was placed on ECMO for stabilization.

Camilo's family does not leave his side in the hospital. Mom Leslie gives hope and strength to her little Camilo: "Camilo stayed on ECMO for 20 days until we received the wonderful news that a ventricular assist device would be placed. The Berlin Heart would allow Camilo to wait for a donor heart, which he so desperately needs."

The implantation of the EXCOR^® Pediatric was without complications and quite fast. When Camilo woke up, his parents explained the unfamiliar system to him. They told him that the EXCOR^® is a machine that keeps him alive. And it will do so until he gets a donor heart.

Camilo understood this and got used to the device very quickly. He accepted it as a given and was careful not to twist the cannulae when he sat down. At night, when he went to sleep, the first thing he did was put the pumps in a position that was comfortable for him.  

The nurses always had fun with Camilo, and when it was time for dressing changes or daily pump checks, they played his favorite music. 

Camilo's parents made him understand that he won't need the EXCOR^® forever. But it will help him recover while they wait for the heart. 

Exactly 5 days before Camilo's 5^th birthday, Camilo received a donor heart. 

The transplantation lasted about 6 hours and went without complications. Shortly after Camilo woke up from the anesthesia, he was already calling for his mom.

For Camilo's family, it has been an emotional journey with ups and downs until this point. Mama Leslie would like to share Camilo's story to encourage other parents:
"We must not lose hope, we must fight side by side with our children. We have to support our children. Then they will have a chance to get through these bad times in their lives. We have to be by their side and stay positive to make their wait for a donor heart easier. We are incredibly grateful that Berlin Heart exists. Camilo would not have survived the wait for a heart transplant otherwise. Through all these experiences, I have realized that I am stronger than I ever expected."

Dear Leslie, we are working on the continuous development of our systems and want to give many children with heart disease the chance of a happy future. Thank you very much for your great trust. We wish Camilo all the best, you are an incredibly strong family!

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^® venous cannulas with grafts, Excor mobile and EXCOR^® Active is not FDA-approved and not available for commer¬cial use in the US.
 

Scarlett is a healthy girl. She attends kindergarten twice a week, she goes to pre-school gymnastics classes and she spends hours playing with her siblings. Scarlett is full of energy and joy of life. 

Suddenly Scarlett got sick and I thought of a viral infection, maybe a normal cold. However, as the day went on, it turned out that it must be something more than just a small influenza virus. But I couldn't imagine what was yet to come. 

Scarlett was taken to our local hospital in Hull. The doctors examined Scarlett's heart, which was beating in her chest at over 180 beats per minute. Scarlett was monitored all night and then had to be transferred to the nearest hospital with a pediatric cardiac unit for further examination the next day. 

On arrival at the children's ward, Scarlett suffered a cardiac arrest. Emergency open heart surgery was performed and Scarlett was connected to the heart-lung machine (ECMO). During this time we learned that Scarlett's heart was greatly enlarged and that there were two possible causes: dilated cardiomyopathy or myocarditis. 

After a few days, the doctors concluded that Scarlett needed longer-term care, so she was transferred to the Newcastle Freeman Hospital. Scarlett spent almost two weeks on ECMO before the doctors decided to give her own heart a chance. 

Unfortunately Scarlett's condition worsened and her heart failed again. The doctors in Newcastle told me that Scarlett's only chance was to get a Berlin Heart implant. The Berlin Heart was intended to help Scarlett bridge the waiting time for a donor heart. I was absolutely devastated. I had only heard about Berlin Heart a few days earlier and all I could think about were the risks and the reduced quality of life with a ventricular assist device.  

Scarlett received the Berlin Heart and the doctors performed a biopsy. This confirmed that Scarlett has myocarditis. 

A week after the Berlin Heart implantation, Scarlett sat in bed talking, playing with her toys and even drawing a picture. At this moment I realized how much the Berlin Heart had helped us. I had my daughter back after weeks of suffering!

Scarlett's state of health stabilized with the Berlin Heart and she was finally allowed to leave the children's intensive care unit. The new ward offered much better opportunities for children and Scarlett was able to do so many things that children of her age should be able to do.

I thought Scarlett was tied to a bed until she got a new heart, but that wasn't the case at all. She could visit the playroom, sit at a table, do puzzles and play. 

After a few weeks with the Berlin Heart, we received a message that we hadn't even dreamed of: Scarlett's heart had recovered thanks to the support of the Berlin Heart! It had healed itself and was able to take over its function on its own again! Scarlett was allowed to come back home to us with her own heart!

I cannot express how grateful I am for this remarkable device.
Without the Berlin Heart Scarlett would not be here today, it gave her a second chance!
 

However, at the age of 1.5 years her condition worsens and the dilated cardiomyopathy becomes acute. As a result, Ichika's heart is no longer able to supply the body with oxygen-rich blood.

Initially, Ichika receives medication at the University Hospital in Hokkaido, but her blood pressure drops. Ichika has to be connected to an ECMO (extracorporeal membrane oxygenation). ECMO is a quasi-modified and miniaturized heart-lung machine, which was necessary for her to support heart and lung function.

At this time, the medical team in Hokkaido is already planning her transport to the National Cerebral and Cardiovascular Center in Osaka, 1600 kilometers away. But in Hokkaido there is a huge snowstorm and the airport will be closed. The journey becomes an odyssey.

Finally, the Japanese Coast Guard brings Ichika to Osaka by propeller plane.

At night at 2:00 am the team reaches the airport in Osaka together with Ichika. The doctors in Osaka react with great determination and carry out a computer tomography immediately after landing. Ichika suffered a stroke during the transport.

A few days later Ichika is implanted with the EXCOR^® Pediatric as a left-ventricular assist device (LVAD). The EXCOR^® gives Ichika the chance to bridge the waiting time for a donor heart.

The parents and the medical team breathe a sigh of relief, Ichika's state of health stabilizes. She also recovers well from her stroke and fortunately remains free of any consequential damage.

Ichika's parents are relieved: "I feel nothing but gratitude for the life-saving support of our daughter through EXCOR^® Pediatric. Ichika's condition is improving daily, she jumps on her bed, she learns to speak and is developing very well",
says Ichika's mother.

Ichika is just as lively and curious again as she was before her stay in hospital.

We wish Ichika and her family all the best for the future, lots of strength on her way and of course, that a suitable donor heart for Ichika will be found quickly.

One of these heart defects is narrowing of the aorta, known as coarctation. Sheima was operated for the first time when she was just three weeks old.

In addition, Sheima suffered from Ebstein anomaly, a very rare malformation of the tricuspid valve, the heart valve of the right ventricle. Furthermore she had a congenitally corrected transposition of the great arteries. The left atrium was connected to the right ventricle, that pumps blood to her body and the right atrium was connected to the left ventricle, that pumps blood to the lungs. This very rare malformation combination leads, over the years, to a weakening of the right heart ventricle and the oxygen-rich blood cannot be pumped properly into the body.

Fortunately Sheima was able to lead a relatively normal life until the age of 14. She went to school and met friends. Sheima has a many friends and she loves painting.

In the spring of 2019, Sheima's condition deteriorated further and a cardiac pacemaker was implanted to treat cardiac dysrhythmias. The surgery that was supposed to counteract a further worsening of her heart failure, did not yield the desired outcome.

The situation became acute when her heart stopped beating due to severe cardiac insufficiency. Sheima had to be resuscitated and was treated in the intensive care unit to achieve a more stable condition.

Sheima was connected to a so-called ECMO (extracorporeal membrane oxygenation). A modified and miniaturized heart lung machine that was necessary to support her heart and lung function. At this point, Sheima, who was 14 years old at the time, only weighed 29 kilograms: a threatening condition. In addition, help via the ECMO was not a long-term solution and a donor heart was not available.

„All procedures, surgeries and medical treatments did not improve her condition and she developed progressive heart failure. Due to her complex anatomy, Berlin Heart was the only optional mechanical support for her.“ so Dr. Tal Tirosh, Sheba Medical Center.

In November 2019, after careful planning, Sheima received the EXCOR^® Pediatric ventricular assist device, which took over the function of her right systemic heart ventricle. Sheima's health improved under the EXCOR^® therapy. Physiotherapy helped her to improve her strength.

Sheima bridged seven months with EXCOR^® until the long-awaited news finally arrived in June 2020: A donor heart had been found.

The transplantation was a great challenge for the medical team due to the complicated anatomical malformations. But then came a wave of relief when the new heart began to beat!

"Sheima woke up the day after the surgery and was able to be quickly weaned from the ventilator. The new heart is working very well. Now her real journey back to life begins." (Dr. Amir Vardi, Sheba Medical Center)

From Berlin Heart we also wish Sheima and her parents all the best!
Sheima, we are deeply impressed by you, your story and your unbroken will to live.

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 mobil and EXCOR® Active is not FDA-approved.

Even so, they were concerned and took Ben to see their pediatrician. The pediatrician examined Ben thoroughly. He was breathing too fast and not deeply enough; the pediatrician was also concerned about abnormal heart murmurs. So, she immediately referred Ben to the pediatric cardiology department at the DONAUISAR hospital in Deggendorf (Germany).

With the help of an ultrasound, the doctors there determined that Ben had a serious heart condition and, in the worst case, would need a heart transplantation. The diagnosis came as a shock to Ben's parents, who just the day before believed they were a completely normal and, above all, healthy family. And things got worse: the doctors failed to stabilize Ben's heart function with the help of medications. Just two days later, Ben was so sick that he was flown by helicopter to the Munich University Hospital, Großhadern Campus, more than 160 km away.

Here, Ben's parents found out that Ben's left atrium was much too big. The diagnosis was restrictive cardiomyopathy, a cardiac muscle disease in which the cardiac muscle hardens and is no longer able to properly expand and allow blood to flow in. In this rare condition, blood flow from the heart is reduced and the blood builds up in front of the ventricle. At this point it became certain that a donor heart was the only chance for their son to go on living.

While Ben was still in the intensive care unit, for the first time his parents saw a child who was being supported by the EXCOR^® ventricular assist device on ward G9 of the Department of Pediatric Cardiology and Pediatric Intensive Care Medicine. However, they initially suppressed the idea that their son could also be dependent on it.
At the beginning of November his condition had stabilized to such an extent that he could be listed for an organ donation at Eurotransplant. Still dependent on medication, he was even discharged a few days later in order to be able to spend the waiting period at home.

But in mid-January Ben struggled with an inflammation of the gallbladder and had to be admitted to the Munich University Hospital again. His heart was not able to cope with this strain, so the doctors decided to operate to reconstruct the mitral valve at the beginning of February 2020. Ben's parents were informed in advance that if complications arose during the operation, implantation of the EXCOR^® Pediatric ventricular assist device would be Ben's last chance.

In fact, Ben left the operating room with an EXCOR^® pump to support his left ventricle. What initially came as a shock to Ben's parents turned out to be a relief after a few days. "Our son would not have survived without the Berlin Heart device. What's more, he made a great recovery on the system and fought his way back. Despite the prospect of now having to spend the long wait for a donor heart in the hospital, his regained smile was a blessing for us," said Ben's father.

Nevertheless, the situation was a great burden for Ben's parents. During the week, Ben's mother was there for him around the clock and spent the nights in the Ronald McDonald house near the hospital. At home, his father took care of Ben's big brother, Tim, in addition to working and was more than grateful for the support of the entire family. He spent the weekends at the hospital while Tim was looked after by his grandparents.

In addition, the measures that were being taken as part of the COVID-19 pandemic were troubling them. Ben was moved to a smaller room at the end of the ward and thus isolated even more. His brother and the rest of the family were no longer allowed to visit him either. His freedom of movement was more restricted than before.

So everyone was happier when Ben's ventricular assist device received the new mobile driving unit EXCOR^® Active in May 2020. “The change to the new driving unit was a huge relief for us. We were finally able to leave the ward room for a while. During our first long walks around the hospital grounds, Ben looked around wide-eyed. He was enormously happy to see his big brother again on these occasions,” reports Ben's father.

"In addition, the new driving unit made the situation in the ward room more bearable due to the lower volume and heat radiation," added Ben's father.

While Ben and his family were making good use of their new-found freedom, Ben's father received the redeeming call on the evening of June 3, 2020 - a donor heart had become available. That night, Ben was being prepared for the operation and after it had been determined that the donor organ was suitable, he would be given the transplantation on the morning of June 4, 2020.

When his parents saw Ben in the intensive care unit after the operation, they were overwhelmed. The pump and cannulae were gone and a new heart was beating independently in Ben's chest. Just eight days later, he was transferred from the intensive care unit to the normal ward. He returned home just 23 days after the heart transplantation.

"Ben's case confirms our experience in therapy with the EXCOR^® Pediatric. By relieving the strain on their own heart, the system enables children with severe heart conditions to recover and creates the best conditions for a transplantation and a rapid discharge home after surgery" explains Prof. Dr. med. Robert Dalla-Pozza, Senior Consultant in the Department of Pediatric Cardiology and Pediatric Intensive Care Medicine, Munich University Hospital, Großhadern Campus.

"Ben will now have to rely on medication for the rest of his life to prevent his body from rejecting the donor heart. But he's alive and has been given a second chance. We are so grateful for this gift, for the great care of the doctors and nurses in the entire Department of Pediatric Cardiology and Pediatric Intensive Care Medicine at the Munich University Hospital and for the "Berlin Heart" device, which enabled Ben to recover and survive the waiting period until transplantation. However, we would especially like to thank the parents of the organ donor who, in their most difficult hours, allowed their child's heart to be donated” says Ben's father.

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 mobil and EXCOR^® Active is not FDA-approved.

Daniel’s journey begins in September 2018, when his pediatrician diagnoses him with bronchitis; he is expected to recover within 17 days, but after three weeks his condition has worsened rather than improved.

Daniel is admitted to Ward G9 of the Pediatric Cardiology and Pediatric Intensive Care at the University Hospital of Munich, where his parents receive the shocking diagnosis: without a donor heart, their son will not survive.  

Until February 2019, doctors at the University Hospital of Munich attempt to stabilize Daniel’s condition using medications. However, in the night of February 10-11, 2019, Daniel undergoes emergency surgery to implant an EXCOR® Pediatric Pump in order to support his left ventricle.  

After the operation, Daniel’s condition begins gradually improving. He recovers his appetite, puts on weight, and wants to be actively part of the world around him again. For Daniel’s mother, Diana, who is always by his side, it’s a glimmer of hope after many anxious moments.  

“For me, the Berlin Heart is both a blessing and a curse”, she says. “A curse because it keeps us ‘trapped’ at the hospital. A blessing because Daniel is alive. The machine has saved his life. Thanks to it, he has recovered well and regained his strength.”  

Day after day, she tries to make the best out of her time at the hospital and looks for new ways to keep Daniel occupied. Fortunately, Daniel makes things easy for her: He’s a quiet, easy child, and despite how much he’s suffered, he’s a real sunshine. If you forget the ventricular assist device for a moment, you might think you are looking at a perfectly healthy little boy.  

And like any other child, he loves discovering the world as he plays, laughs, and learns to walk. Since March 2020, the new EXCOR® Active driving unit has given him more independence and mobility.  

The driving unit is easier to operate and has a longer battery life, which means Daniel and his family can go outside for a walk on the hospital grounds. Thanks to EXCOR® Active, his world has become a few significant steps larger.

In total, Daniel waited 943 days in the Munich hospital for a donor heart. Almost three years of hoping, fearing, and waiting until the long-awaited news. One night in June 2021, Daniel receives a donor heart. Today, Daniel and his family enjoy life to the fullest and are more than grateful for the wonderful gift they have received.

Daniel’s mother works actively to promote organ donation, and blogs on Facebook and Instagram about her and Daniel’s lives.

Find out more under:

# herzbubedaniel
Facebook
Instagram

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}

The expectant parents were referred to the Heart and Diabetes Center NRW in Bad Oeynhausen to undergo further treatment and intensive care. Elias was born there on December 15^th 2006. His birth was supervised by many physicians, and proceeded completely normally. For a short while, Elias lay in his mother's arms, but sadly a bluish color in his lips quickly became apparent.

The examinations then revealed the sad certainty that Elias was suffering from a hypoplastic left heart syndrome (HLHS), with his left ventricle being underdeveloped and not being able to supply the systemic circulation with sufficient blood.

Just four days after his birth he had to undergo his first major surgery. While undergoing the Norwood operation, the trunk of his pulmonary artery was severed and the excessively narrow aorta was widened with a patch. The aorta was then sutured into the trunk of the pulmonary artery so that both vessels were then connected. In addition, the lungs were supplied with blood via an artificially created connection, also known as a shunt, from the aorta via the pulmonary artery. In this way, the right ventricle could now serve both the lung and the systemic circulation with blood.

Six months later a second operation (Glenn operation) was carried out and in the summer of 2010 a third (Fontan) operation followed. Everything proceeded well and the family finally began to raise their hopes. Elias attended the kindergarten like any other child and was otherwise a bright and active little boy as well as a passionate fan of FC Bayern Munich. Only his surgical scars and daily medication reminded him of his serious illness at this time.  

But in early 2013, his health deteriorated dramatically. After a flu infection, his already weakened heart lacked the strength to provide his body with enough blood and oxygen. Elias was then re-examined at the Heart and Diabetes Center NRW in Bad Oeynhausen. The diagnosis. Heart failure. His only escape was to receive a donor heart. In the hospital, the doctors tried to stabilize his condition with medication. But after a short time, this therapy was no longer enough. The only way to bridge time while waiting for a donor heart and save his life was to implant a ventricular assist device.

In April 2013, an EXCOR^® Pediatric was implanted during an 8-hour operation. His weakened heart meant that this was not in any way a routine operation.  Despite this, everything went well.  After surgery, Elias slowly recovered and was relocated from intensive care to a normal ward only a few weeks later. But he was always accompanied by his IKUS driving unit. At that time, according to his mother, he had already arranged for the Berlin Heart to be his.

But for Elias and his family it still remained a case of fearing, waiting and hoping. A truly monstrous burden for everyone involved. Elias could not leave the hospital. His father took indefinite leave from work so that he could always be with Elias. His mother took part-time work and looked after Elias' little brother at home. The family received support from all sides. Even from Ronald McDonald nearby to the hospital. They were even given use of a complimentary apartment. This allowed his father to always be by his side.  

"Don't take the hearts to heaven, they are needed here on earth" were the words that often went through his mother's head at the time. The organ donation situation in Germany was alarming, with children in particular often having to wait months for a suitable organ.

But despite this, Elias and his family remained brave and after more than 3 months they were rewarded with the happy message that a heart had been found.

The transplant was successful and after only a few weeks he was finally allowed to return home with his family.

A year later he was re-enrolled into school and returned to playing soccer again. Like every other boy of his age, he kept his parents busy.

But at the start of 2016, the next shock was in the pipeline. Elias was diagnosed with cancer as a result of the transplantation and the permanent immunosuppression. This immunosuppression was designed to suppress his own immune system to avoid a rejection reaction to his donor organ. However, this can also lead to degenerate cells not being recognized, and as such, an increasing risk of cancer.

Once again he had to go to hospital to undergo a chemotherapy. Once again, Elias bravely fought it, and won. He happily celebrated his 10^th birthday in December at home in the company of his family.

Today, Elias is a bright teenager with a true fighter's heart. He and his family have overcome all the hurdles and setbacks with a great deal of courage, bravery and a never-fading smile. We would like to pay the utmost respect to them and wish them all the best for the future.

Jenny Karsberg’s story began in the summer of 2010 when she first had difficulty breathing. Her doctor assumed that she suffered from asthma and prescribed her asthma medication. However, her condition did not improve. Several weeks later the 41 year old woman began coughing so severely that she had to go to the hospital. Jenny was, however, extremely weak. For this reason the ambulance rushed her to the emergency room near the hospital. In the emergency room the doctors resuscitated her to save her life. An ultrasound of the heart clearly showed that she suffered from congestive heart failure. Additionally, an x-ray of her lungs showed an enlarged heart. Eventually she was diagnosed with idiopathic dilated cardiomyopathy. Jenny was then transferred to the Sahlgrenska University Hospital in Gothenburg, where she stayed in intensive care. In October 2010, Jenny resumed working part time as a chemical engineer and also swam and danced again.

In 2013, the Swedish woman started to feel pressure in her chest again and grew sicker over the summer. For the second time she had a pulmonary edema. As a result, Jenny underwent surgery to repair her mitral valve. Unfortunately, Jenny’s heart was very weak. The patient did not recover as expected. She then had kidney failure and was put on dialysis. After weeks of rest and a long period of physiotherapy she regained her strength; she was released to go home.

Two months later Jenny had to go back to the hospital. She was in critical condition and a thoracic surgery was necessary. Jenny received a Berlin Heart EXCOR^® on December 3rd. Since then the device has supported both of her ventricles. In early 2014 Jenny could finally return home to her husband (whom she met at a dance event 16 years ago) and two children. Her parents currently live with her and her family to support them during this time.

While Jenny was on the system she went to the hospital once a week for routine check-ups. She usually brought her laptop to watch movies and television shows. Jenny found friends on Facebook who have also had a Berlin Heart system. While she was on the waiting list for a heart transplant, Jenny said: “I'm getting stronger every day with my Berlin Heart pump and I try to stay fit and build up my body again to prepare for the big surgery.” She hoped that a matching donor heart would be found soon. What she was hoping for finally came true in late May. After almost six months on EXCOR^® System she received a donor heart in May 2014. Shortly after the transplant Jenny felt great and reported that her new heart is very strong.

Juniper was diagnosed with dilated cardiomyopathy, a disease in which the heart becomes severely enlarged. Thus, the heart does not adequately contract and therefore cannot pump enough blood to her body. In Juniper’s case the left ventricle performs only one sixth as efficiently as compared to a normal child’s heart. As her heart could not support her sufficiently, Juniper needed a new heart. Juniper was listed for a heart transplant when she was only three weeks old.

Juniper was initially able to be treated with medication and was able to go home with her family but after only about two weeks, her condition deteriorated fast. The physicians at the Children’s Hospital in Denver, Colorado decided to implant Juniper the EXCOR^® Pediatric ventricular assist device (VAD) made by Berlin Heart especially for children. The surgery took place on April 10th 2014, when Juniper was just seven weeks old. So far she is the youngest baby at Children’s Hospital Colorado to receive a Berlin Heart.

Juniper’s mother, Joni, remembers being concerned when she first heard about the Berlin Heart device as she was unsure of whether Juniper could act like a normal baby while supported by the system. Her parents soon realized that she can. Despite a complicated early course, Juniper was thriving and developing like every other child of her age while waiting for her new heart.

Regarding future patients to be supported by the EXCOR^® Pediatric VAD, Juniper’s mother says: “We would love it if you shared our story so that other parents may see just how your device can not only help children reach transplant, but to have a quality of life in the meantime. We are just so grateful for your product.”

After six months of waiting, a suitable donor heart was found for Juniper and transplanted on September 17th 2014. After another eight days she was released from the clinic so that her parents could finally take her home.

A moving film from Juniper's parents to the parents of their organ donor can be found here.

Little Elena lived with the ventricular assist device EXCOR^® Pediatric for almost two and a half months. During this time, something happened which seemed so unlikely at first: her heart recovered so well that the doctors at the DHZB (German Heart Institute Berlin) were able to explant the system.

Background:

When Elena was five months old, she suddenly began to suffer from severe breathlessness. The infant had to be resuscitated while still in the helicopter on the way to Dresden University Hospital. It quickly became clear that Elena's heart was very poorly. At the German Heart Institute Berlin, Elena's parents finally received the diagnosis: dilated cardiomyopathy. Elena's left cardiac muscle had expanded so much that it could no longer pump enough blood through her body.

The little girl's condition was critical – her cardiologist estimated that there was a 95 percent chance that she would need a heart transplantation. In order for Elena to survive until a potential transplantation, the doctors implanted the EXCOR^® Pediatric.

Elena's father, David, was working for the company National Instruments at the time – a long-term partner of Berlin Heart. It supplies hardware and software for the EXCOR® drive manufacturing plants. Therefore, National Instruments contributes to the functioning of the only pediatric ventricular assist device in the world – a system which even saved the life of David's own daughter. "Since I found out what our work at National Instruments achieves, I regard it much more highly than I did before," says Elena's father, "You can count on EXCOR^® – it is a reliable, well-tested system."

Since Elena's recovery, everything has changed: the family is back at home and Elena now goes to nursery. Her father, David, is grateful for this development: "When your child's condition deteriorates so quickly and there is so little hope, it is like having a brick wall in front of you. Elena's illness was a bolt from the blue and had no clear cause. The EXCOR^® System was our last hope. We are so blessed that Elena's heart recovered."

On the x-rays, Lorena's heart is significantly enlarged and she is sent to the intensive care unit of Maceió medical center. But even after one month, the doctors cannot help Lorena and recommend a transfer to the Heart Institute of the University of São Paulo (Instituto do Coração da Universidade de São Paulo), one of the reference centers for heart treatment in Brazil.

Lorena's condition remains critical when the family sets out on the 2.500 km journey to São Paulo in early November 2017. Once there, Lorena runs through comprehensive examination. The diagnosis: dilated cardiomyopathy. The total capacity of her heart remains only at 11 percent (ejection fraction: 11 %) and the performance of her right as well as her left ventricles is severely limited. A heart transplantation seems to be unavoidable.

In order to stabilize Lorena until transplantation, the doctors try to support the native function of her heart with medication first. Unfortunately without success, Lorena suffers a heart attack and must be revived.

Her only chance: the implantation of the EXCOR^® Pediatric ventricular assist device. Five patients - three children and two adults - have already been treated with the EXCOR^® system from Berlin Heart at the Instituto do Coração.

Nevertheless, Lorena is the first pediatric patient in Brazil to have a biventricular support due to the severe dysfunction of both heart ventricles. That means one EXCOR^® pump supports each ventricle. Furthermore, her low weight of only 5.5 kg at the time of implantation, worries the doctors.

But everything goes well. Shortly after the operation, Lorena's condition improves visibly, all vital organs such as liver and kidney are properly supplied with blood again, she eats normally, interacts with her parents and smiles. A glimmer of hope for Lorenas parents. “After a short period of time Lorena had gotten used to her two little hearts and she was getting better every day," says Lorena's father Renato Luciano Torres.

During her time in hospital, not only Lorena’s parents but also the entire medical and nursing team stand by her side. In February Lorena celebrated her first birthday with her family and the whole team.

Only two months later, in April 2018, Lorena's parents receive the long-awaited message - a donor heart is available. The ensuing transplantation is successful and only a few weeks later Lorena can finally return home.

We keep our fingers crossed for Lorena and her family and wish them all the best for the future.

This ended with me being taken to the ER one night with shortness of breath. I received the diagnosis of dilated cardiomyopathy – a complete surprise to me, that someone of my age and level of physical fitness would have to deal with cardiac insufficiency.

In February 2008 I was fitted with an implantable defibrillator. In addition, medication-based therapy was adjusted to a level with which I would be able to live a rather “normal” life. I completed a vocational diploma and then successfully completed my studies in Business Administration. Next, I started working for an IT company.

In August 2013 I suffered from cardiac decompensation and had to be taken once again to Emergency at the University Hospital Homburg. Since my condition did not improve, I decided in December 2013 to check myself into the hospital in order to receive treatment. On December 13, 2013, I was added to the transplantation list with an HU (high urgency) status.

After that, everything happened very quickly. Over the Christmas holiday I experienced multiple organ failure of my heart, kidneys and liver. On December 27 I was told that I would be moved to Cardiac Surgery. I had to undergo several tests, but the end result was that I needed an EXCOR^® ventricular assist device from Berlin Heart. On this particular day I received temporary circulatory support and was placed in an artificial coma. On January 2, 2014, I was implanted with the EXCOR^® system.

At the beginning everything felt very strange, my family and I had to get used to the device. However, every single day we took one step forward and no steps back. After a three-week rehabilitation period I was able to go home. This was possible because my family, especially my wife and I, had become technically familiarized with the EXCOR^® system. Thanks to my wife, we were able to change the wound dressings at home. Her many years of experience as a doctor’s assistant at a Dermatology practice was an advantage for us.

Every four weeks I went to the hospital in Heidelberg for follow-up visits. My state of health had improved enormously. I was able to help out at home, which eased my wife's burden a bit. We went shopping together and went for walks around our neighborhood. When we had free days we enjoyed taking day trips with friends. On these occasions I was the only one who didn't want to take a break. In short, with Excor mobil a person can have a pretty normal life. It is almost like living without an EXCOR^® system, but somewhat more tedious in certain situations. But I, or rather we, were able to overcome even these situations. The EXCOR^® was simply there. And we are so grateful that something like this exists. It saved my life.

Then came November 2, 2015. During the morning I was in the city with my wife. Once home I laid down on the sofa to rest a bit. Suddenly, I choked and started coughing. My wife noticed immediately that something was wrong and she called the ambulance. I couldn't speak clearly anymore. A short time afterwards, an emergency team arrived. My left arm and left leg were making movements that I could not control. It quickly became clear that I was suffering from a stroke. The ambulance raced to the University Hospital in Homburg. The initial tests confirmed our suspicion and my mind slowly started to clear. I took it with good humor and told myself that I could finally be placed on the donor list under high urgency status, and I would probably receive a donor organ very soon. I remained one more week in the Stroke Unit. Then came the news we had longed for. I was transferred to Heidelberg and listed as highest priority – a small possibility in Germany of receiving a donor heart on time. During the week in the Stroke Unit, almost everything normalized again. Very little remained from the stroke, and I took the following step full of optimism. It was clear to me that, from this point on, I would only leave the hospital once I had received a donor heart. How long that would take, that was impossible to say: days, weeks or even months. I tried to make the best out of the situation, there was nothing else I could do.

My family came to visit me almost every day. We always went for a short walk first, and then went for a cup of coffee in the coffee shop. During the course of the first week, they still had to run tests in order to register me as a patient with Eurotransplant HU (highly urgent). On 18 November I came back from my walk in the late afternoon, and my treating physician came into the room and told me with a smile: "As of today, you are registered with Eurotransplant HU." He showed it to me in black on white. I was so happy that I think I even cried a few tears. From this point on it was a waiting game, waiting for a phone call and good luck.

One night in February 2016, the night nurse stood suddenly before my bed: there was an offer for a donor organ. I couldn’t believe it. This moment was anxiety-ridden for me because I knew that this would be hard, but I also knew I would be OK. When I arrived in the Surgical Dept., I was received very warmly. I knew most of the Nursing personnel well, and they were happy that it was finally my turn. The doctor told me that the team was on their way to remove the organ. The operation began at around 6 o’clock. Already one day after surgery I was weaned from the mechanical ventilation and was able to breathe independently. After two days in the ICU I was transferred to the Monitoring station. Here I took the first steps with my new heart. In the course of the week I was transferred to the regular ward.

The further course of my hospital stay was fairly free of complications and went quickly, such that we soon spoke of rehabilitation. After exactly four weeks I was able to leave the hospital and was even home for a couple of days before entering rehab. After my first operation, I had promised the personnel at the rehab clinic in Bad Schönborn that I would return after my transplantation. So it was, and rehab went very well. I could feel that my new heart was doing a great job. After my official exercises, I would go outside for a walk or sit on the ergometer. I always wanted to be doing something. The three weeks flew by.

Once I was back home I was able to relax a bit. The first year after transplantation I had to return for follow-up biopsies every four weeks. I continued exercising to achieve physical fitness. My walks became longer and faster. Jogging was not a possibility due to joint pain. Then I started riding a bike. During my third bike ride on a Saturday afternoon, I was hit on a rural road by a car, took a bad fall, and broke my left hip and my left elbow. Both required surgery. Once again, I couldn't walk well for weeks. After about six months I slowly started jogging again. Next I wanted to ride a bike again.

In April 2016 I began my professional reintegration. I was able to resume my previous job. Since June I have been working again full time, and it is no problem whatsoever. Here too, I see only advantages that are good for my psyche. Almost two years after my operation I have felt ready to go on winter vacation again. I am very satisfied with how things have progressed and, most of all, I feel strong. But I also have to work for this. I regularly engage in the type of sports that I feel are good for me. In winter I go jogging up to four times per week. In summer I spend most of my free time biking – which is primarily an endurance sport – just like a normal, healthy person.

I also think very often of my donor, I look up to the sky and can only say “Thank you”. Especially for those moments that I wouldn't have been able to experience, had it not been for his/her organ donation. Everyone should reassess their personal decision for or against organ donations, and also clearly communicate their wishes. Organ donations save lives. My life was saved by an organ donation. And NO, another man DID NOT have to die for me!

Written by Mathias K.
_{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 mobil and EXCOR^® Active is not FDA-approved.}

A defibrillator was implanted and she also had to take medications regularly. All of this only helped in part, however. In the following years, Tatjana had to undergo repeated cardiac catheter examinations and continue taking medications to support her heart's total pump output. Over time her condition worsened to such an extent that only a donor heart or, provisionally, a ventricular assist device would be of help. Thus, on August 25, 2016 this young mother was implanted with an EXCOR^® system at the University Hospital Heidelberg. After approximately four months in the hospital and three weeks in rehab, she was finally able to return home to her family.

Tatjana lived with the EXCOR^® system for more than one and a half years. Two pumps and the Excor mobil driving unit were her constant companions. They continuously supported the two weakened sides of her heart and supplied her body with blood. Over time, the Saarland native was able to regain her strength and reach a normal body weight. In conversation she tells us that she has no problems with EXCOR^® and that she trusts the system. Nevertheless, the system’s driving unit is fairly heavy and she noticed it when climbing stairs or when out for a walk. Thanks to the heart support system, Tatjana was able to stay at home with her family while waiting for a donor heart. There she took care of the house and of her lively young daughter. The now 35-year-old avoided the hospital as much as possible: “Thankfully, I didn’t have to go to the clinic very often. I checked the pumps myself using my mobile phone flashlight and a mirror. My partner took care of the wound dressings.“

In order to prepare herself for the time she would be on EXCOR^®, Tatjana did some Internet research. She felt good knowing that there are other patients who live with such a system. Her VAD coordinator in Heidelberg and her family also helped her to manage the new situation.

In August 2018 it was finally time to find a suitable donor heart. The transplantation was successful and although it was a hard road for Tatjana, she is well today, with her new heart. She has been working again since February 2019. Not much, as she says, but it’s a start.

We are very happy for Tatjana and wish her and her family all the best for the future.

_{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 mobil and EXCOR^® Active is not FDA-approved.}