Wednesday 28th July 2021
In May 2021 Christian Nielsen's murmur was detected at a routine medical check up for a visa application. After just welcoming their second child into the world, Christian's life was turned on it's head, and after receiving further tests it was found that he required urgent surgical intervention. With the support of his family, his medical team, and Heart Valve Voice, Christian faced the challenge head on, and is now recovering at home with his family.
This is his story:
"It was a beautiful sunny day, 6th May 2021, when I biked to a routine medical check for a visa application where the doctor picked up my heart murmur. We had just had our second child only two weeks earlier and I was still on parental leave. We had scheduled and arranged to move to Canada in early October and take a three-month sabbatical to drive through Europe in a converted van and see my family and friends in Denmark ahead of our move.
Even though the doctor needed to explain to me several times what a heart murmur is, and it wasn’t clear at the time what was causing it, I was shocked. I am only 38 and have lived a very active and healthy life and have never experienced any symptoms. Surely the doctor had to be wrong.
Soon after I found myself biking to a cardiologist and after a quick examination, he was quite certain that my murmur was caused by a faulty aortic valve. I of course needed to have an ECG and echocardiogram done to confirm his diagnosis, which happened the week after. I was still shocked and honestly in denial. I felt fine.
14th May my cardiologist took me through the results on a video call. The case was clear - my heart murmur was caused by a faulty aortic heart valve, which was leaking severely. In medical terms, it’s called aortic regurgitation, but I prefer to call it backflow. The fact was that the freshly aired blood entering my heart from my lungs was flowing back into my heart as it was trying to pump the blood out to my entire system. As a result, my left heart chamber had grown in size to compensate, which in combination with my good health and active lifestyle was the only reason why I didn’t experience any symptoms. The cardiologist and his colleagues were quite sure I needed preventative surgery right away to take the strain off my heart and avoid any future complications and irreversible damage. A CT scan was needed to diagnose further, but a consultation was already arranged with a renowned heart surgeon. I still struggled to accept my condition.
It was a rainy day, 20th May, when I biked to my CT scan. The ride helped me take my thoughts off the fact that I had a bit of anxiety around the scan and having to have a contrast dye injected into my blood. It was luckily quite straightforward, and I was glad to learn that the dye only made me feel as if I had peed myself.
21st May my wife and I finally got to meet with the surgeon who took us through all of my results and explained in great detail why a heart valve replacement was highly advised. A tentative date for surgery on 10th June had already been assigned to me at London Bridge Hospital and all we needed ahead of it was for me to have my dentist ensure the absence of any infections (complete x-ray) and my second COVID jab. In the meantime, I also needed to choose between a mechanical or a tissue valve, and which one in particular. This meeting was a turning point in my mind, as I started to accept reality.
May had been such an emotional rollercoaster for us at home with the great arrival of our second lovely child and then the sudden reveal of my heart valve disease. Not only did it throw a huge spanner in our lives practically having scheduled to move out of our apartment to start our camper van adventure in late June, but we didn’t know whether surgery would go ahead. Our lives were on hold until the green light was given on 29th May and we finally had certainty and even though everything fell perfectly into place, it was still really hard for us to be dealing with the fact that it had all happened so quickly. On top of that, it was hard for me to accept my own mortality and we had to accept all surgery comes with risks.
It was immensely helpful to be able to speak to someone through Heart Valve Voice who had recently been through the surgery himself, because before my surgery I had never been hospitalized, had never had anaesthesia or any form of surgery. I had tremendous support from my dear wife, family and friends, but I needed to talk to someone who had been through this themselves because it was difficult to understand what recovery would in fact look like for me and how such an event would change my life. The conversation I had with Derrick Johns was so much more than “just” a chat with a fellow ‘valver’, because it helped me accept my new reality and prepare mentally.
I was admitted to the hospital in the afternoon on 9th June for tests and preparation for an early morning surgery on 10th June. It was tough to leave home knowing what was going to happen, as well as knowing that my wife and children wouldn’t be allowed to visit me due to COVID restrictions. All preparations and tests went well, and I actually felt ready at that point.
The next day I had a lovely call with my wife and children as I was sitting in the window of my room, watching people walking around London Bridge St. on a beautiful sunny day. I was then picked up at 8:30 am for the surgery. After arriving at the theatre suite, I drifted away calmly shortly after having a needle inserted in the back of my hand.
At about 1 pm the surgeon called my wife to inform her that everything went well and at about 6:30 pm I woke up by myself at the intensive care unit. Even though it was a bit scary to wake up in ICU with monitors, lights, hoses, etc., I only remember feeling very relieved and happy that everything had gone well. To my great surprise, the team had been able to perform my valve replacement minimally invasively. This means that only part of my sternum had to be opened, which makes recovery easier and faster. That evening I was able to have a short call with my wife but struggled trying to keep awake. I spent the next two days in the ICU and was then moved to my own room free to move around. A really great day even though I felt a bit down on this third day, which I had luckily been warned about in advance because it’s when the main drugs wear off.
Only a week after my surgery I found myself driving home in an Uber on a gorgeous sunny day after what the hospital described as an “uneventful recovery”, which I was really grateful for. It had of course not been without challenges for me personally having just gone through major surgery and not being allowed visitors due to COVID restrictions, but support from my dear wife and children, family, friends and the lovely staff at London Bridge Hospital helped me get through.
To this day, I’m amazed at how well the whole thing was managed and especially how well the care teams operated. And I don’t just mean doing their job well. I mean how heart warm and caring people have been throughout, which can only come from people with a genuine interest in the well-being of their patients. I cannot thank the lovely staff at London Bridge Hospital enough for their support and true empathy. It’s something I don’t take for granted, along with a lot of other great things in life now that I’ve been given a second chance since being found out, then fixed and now recovering with my loved ones at home.
It’s only been three weeks since my surgery and to my great surprise, I’m recovering better than I had dared to expect. I can easily walk more than 60 min at pace and while hills do make me short of breath, it feels good and I can see I’m progressing. Sleeping has been challenging due to soreness and stiffness in my upper back and shoulders, but every day has brought improvement, because of time and my daily arm/shoulder exercises. It’s been so life confirming to be around my wife and children again, playing with them and holding them. The perfect remedy for me.
Life is so precious when we learn to appreciate its gift. I’m so thankful to have been found out and swiftly fixed. Every day the little ticking from my mechanical valve (my heart valve voice) reminds me not to take life for granted and to live life to the fullest. I’m not going to waste my second chance!"
Thank you, Christian, for sharing your story with us. If you have been treated for heart valve disease and would like to share your story, email firstname.lastname@example.org
The more we listen, the more lives we save.