Linda received two heart transplants: 'I am living on borrowed time'

'Sometimes I can barely imagine that it happened,' says Linda. 'I’m living on borrowed time. Otherwise, I would have turned 38; now I’m 53. That feels like a gift. It can also be stressful at times. Then I ask myself: what is the purpose of my existence? But then I know that I can be there for my children and the people around me.'

In 2009, Linda underwent two heart transplants in a short period of time, followed by many serious complications. Afterwards, she could no longer do everything she had hoped for. "That was a disappointment, but now I can be grateful for the little things. When the sun shines, for example, I enjoy it to the fullest. I can see beauty in the small things. That way, I experience many moments of happiness in a day. Going for a short bike ride, feeling the wind in my hair—wonderful!"

Straight to bed

Linda always thought she was healthy, until she developed a rapid heartbeat halfway through her second pregnancy. When she saw the cardiologist, she was immediately put on bed rest. "I had to be put on a defibrillator to regulate my heart. My heart wasn't pumping properly and was enlarged. I was given medication, and while it wasn't clear what it would do to the baby, there was no other choice." Near the end of the pregnancy, Linda ended up in the ICU with heart rhythm disorders. "Because the baby's heart rate wasn't right either, I had a C-section. After that, my heart pumped better. By then, it was clear that I had dilated cardiomyopathy, an enlarged heart."

Hereditary condition

Three years later, Linda’s father developed heart problems. ‘It turned out he had the same condition, and so did my younger sister. It’s hereditary; we have a mutation in the PLN gene. All three of us were fitted with an internal defibrillator, or ICD for short, which resets the heart rhythm with shocks. It has saved my life several times.’ Her sister was about to start screening for a heart transplant. ‘But she passed away very unexpectedly. That was a huge blow. I was already anxious before, but then I became terrified.’

Support

Linda’s condition kept deteriorating. ‘I just lay on the couch and slept a lot. After an accelerated evaluation for a transplant, I ended up on thewaiting list‘After two months, a heart became available.’ But what was supposed to be progress turned into an ordeal. ‘When I woke up a few weeks later, it turned out the transplant had failed. The donor heart was rejected immediately. They left the wound open and kept me in a coma, and I was kept alive on a heart-lung machine while waiting for a new heart. They were searching for one all over Europe.’

During that anxious time, the family found great support in their faith. "We are Christians, and they heard God speak to them, saying that I would not die, but live. That I would receive a second transplant. In a Bible story, a sick king asks God for more time, and He says: you will have 15 more years. That story gave them confidence. And fortunately, a second heart soon arrived that worked perfectly right away."

A close call

A difficult time began with serious complications. ‘I was kept in a coma, on an ECMO machine. My other organs started to fail, so my family had to come and say goodbye. It was touch and go, but I made it. I was put on dialysis and remained on a ventilator. When I woke up, I could only move my fingertips.’

For months, Linda lay in the ICU. ‘When I was finally allowed to move to the ward, I had to relearn everything. After a total of eight months in the hospital and a rehabilitation center, I was able to continue as an outpatient until I recovered. Now I can do more than before, but working is no longer possible. And I still have heart rhythm disorders. It took years to learn how to deal with that.’

Photo of children

After all that adversity, she found her balance. ‘God spared my life. I am grateful that I can be there for my daughters, although it remains difficult that I can no longer work or play sports. Sometimes I struggle with being grateful. I have also said: I can't go on. But the support of family and friends helped. They would point me to the photo of my children by my bed, which gave me courage again. And if I didn't survive, I would go to God in heaven. People sometimes had to remind me of that.’

Missed

All of this cost Linda her marriage. ‘Very disappointing, but we have a good bond and still do a lot together, including with the children.’ And they are the most important thing to her. ‘It’s fantastic that I’ve seen them grow up. We came out of it well, but with scars. They often had to take care of me and I had to accept that. But I was always there for them and could listen to their stories. We talk about it often, also about things they had to do or things they missed out on with me. For example, when the eldest started secondary school. You can't erase that; they missed out.’

Joy

Now things are going relatively well and Linda can enjoy many things. ‘Crocheting, making cards, printing T-shirts, I get a lot of joy from that. I can also do fun things with my daughters because I no longer have to sleep during the day. The first time going abroad was also special. That feeling of freedom! I never thought that would be possible again.’ Moments with friends are also valuable. ‘I love deep connections, nice heart-to-heart conversations. I started a pastoral training course to be able to talk to people in difficult situations, as an expert by experience. I can empathize well with others and those conversations give me energy.’

Two celebrations

Linda regularly reflects on her donors. ‘I think about my donor heart daily, if only when I see the scars. And in the ICU, I had dreams about the second donor; I wondered what kind of person they were. The second transplant day is also my birthday, so I celebrate two parties. I always celebrate it with friends, then we eat cake. I have someone else's heart, for which I am grateful. I realize that someone died and that I am alive because of that.’