Patient No. 794
Exactly 6 month ago I had my successful Pears surgery and today I will take some minutes to summarize my experience.
In May 2021 during a health check-up it was found that my aortic valve is bicuspid and also there was generalised dilation (4.6 cm) of my ascending aorta. I was quite surprised as I had very regular heart checks in my early years due to an open heart surgery at age 5 years to fix a patent ductus arterious Botalli. The bicuspid valve was neither mentioned then nor in the regular health-checks I had in my 40s.
However, the guidance was to check this with a cardiologist on a yearly basis and I was not too worried as the first check in December 2021 confirmed the 4.6 cm aortic diameter and I only should take care of my blood pressure. Unfortunately the follow-up in mid December 2022 showed a growth to 5.1 cm which was confirmed also through a CT and I was told now to get an appointment at the heart centre.
I realized that this is now getting serious and over the (far too) long Christmas break I was reading tons of material about my disease and possible treatments. In one German forum where people are discussing their heart valve issues I found an encouraging contribution from a guy who went through the PEARS procedure and I put it on my list of questions for the heart centre.
Early January I finally got an appointment at the heart centre with a clear indication for a timely surgery. I raised some questions regarding the risk of surgery (as there is heart-lung machine required…) but all my concerns were not seriously answered. I finally ask for PEARS and the only reaction was that there is no alternative to the standard Root Replacement treatment and if there would be one he would be aware.
Back at home I looked again for the article I had found and a surgeon in Vienna was mentioned who performed the first PEARS surgery in 2022 in Austria. After sending him an eMail Prof. Dr. Kocher called me back only an hour later. He confirmed that in principle PEARS would work for me but we would need a second CT which also could be used to create the required data for the 3D printed Aorta model. Therefore I went at the end of January from Berlin to Vienna for the CT and also for a discussion on a peer to peer basis to answer all my questions. After the appointment I was convinced that I had found the right procedure and even more important the right surgeon for my problem.
The surgery was finally confirmed for end of April and the time until then was mentally quite challenging. I assume I was a pain in the neck for Prof. Dr. Kocher and his team.
The weekend before the surgery I went with my wife to Vienna und we spent a nice weekend in one of this most beautiful of cities. Two days before my birthday I checked in at AKH in Vienna and on April 25th at 15:09 the surgery finally started. With Prof. Dr Laufer, Prof. Dr Kocher, Dr. Conal Austin joining from the UK and Dr. Osorio I had the best team I can imagine in the OR on my case. At 18:22 the surgery was over and I was quite happy to wake up at 19:00 with having the respirator tube already out. I spent the night and the morning of my 54th birthday in intensive care and was released onto the ward at lunchtime. Overall I felt good apart from some very serious pain in the back. This pain lasted for two weeks as I was only allowed to sleep on my back. Day by day various tubes were removed from my body and I was also able to walk with my wife around the ward. On Saturday I got some fever which continued for some days. The fever always came for some hours in the afternoon and was away when I was ready for sleep in the evening.
On the Sunday I was released from hospital and stayed with my wife for two days in the hotel before moving back to Germany on a night train. Back in Germany I started my post-operative Rehab. The initial check showed a pericardial and pleural effusion. I got quite a mix of medicine to work on various problems. It was good to have a daily dose of exercises combined with some “education” about health, life and how to avoid further heart problems. What I realized is that my recovery was faster than other patients. I assume it was a mixture of being fit going into the surgery, having a planned surgery, and taking the rehab seriously. A check after two weeks showed that the pleural effusion had disappeared and the pericardial effusion was reduced. As a huge pushback I got a Covid-19 infection. As the rehab clinic is not a hospital I had to leave for home care. As this was already my second Covid-19 infection my symptoms were not as bad as the first time (which was in May 2022). However, the test was negative after a very few days but my recovery was more or less back to square one. My local cardiologist took over then and a month later I started a second Rehab locally in Berlin. This 4 weeks really helped me to get my strength back.
Since mid July I’m back to work full time. I had a nice 2 week vacation with my wife on Mallorca and managed to move one of my daughters from Berlin to Passau to start University, I also arranged a 6 month exchange program to New Zealand starting early next year for my other daughter. As a positive effect of changing my lifestyle my blood pressure has come down to an optimal level and I’m off all medicine weeks now. I’m also maintaining my level of exercise using my ergometer as often as possible and going regularly to the gym. I also restarted running. Last weekend I ran 18 kilometre @ 6.3kph, so far the maximum I have done after surgery. Therefore back to business as usual.
I look forward for my first post op CT next week but I’m very confident that everything will be positive. I will also have a full health check the week afterwards somehow closed the loop with the check where everything started with. A big thanks to Tal and the rest of his team. Even PEARS is now already successfully done since 19 years it is still innovative. I’m proud to be number 794 of the family and 100% convinced that I have taken for me and my family the right decision.
As a personal summary I can only recommend the following:
- The diagnosis might be scary but there are several ways to fix it – there is no one size fits all approach
- Try to find a cardiologist and surgeon which you can trust – I was always scared of surgery but was very relaxed and comfortable in this one (thanks to Prof. Dr. Kocher and his team)
- Go into forums where people with similar symptoms are discussing their problems (there are several groups on Facebook) – sometimes it helps to exchange with people who went through a similar disease
- Get fit before your surgery: it will help your recovery, if possible start promptly with a rehab course and keep up with your exercises
- The recovery will include some ups and downs but there is a lot of light in the end of the tunnel
Year of operation: 2023