“My ribcage had to be cut down the middle and pushed aside so the lungs could be deflated to allow access to the heart.”
The official medical term for the condition was ‘bicuspid aortic valve’, which meant that my aortic valve had only two cusps or ‘flaps’ to pump the blood through the heart and around the body whereas a normal aortic valve has three – ‘tricuspid’.
This meant that my heart was constantly overworking itself to make up for the lack of parts. As a result blood was now leaking back into my heart the wrong way as the cusps had worn out and weren’t closing properly. Essentially they were flapping backwards.
As my heart wasn’t fully operational each pump was adding more pressure to it and requiring more strength to work, constantly over stressing it, and like any overworked muscle, making it bigger. It was a constant and dangerous cycle so the main reason for the urgency of the operation was that the heart had reached a critically large size and could stop at any moment.
I started to research online, seeking out forums to find as much information as I could about the different operations. There were many websites, forums and discussions but none of them felt relevant. They were talking and asking questions that I wasn’t interested in, it all felt too obvious. I wanted to question everything I was being told, not simply accept the diagnosis with no real idea of what it all meant.
I felt that some of the comments I found were from people who had given up and resigned themselves to what they had been told without wanting to know anymore. I also wanted to connect with someone who was going through the same thing or had been through it but I either found that people weren’t having the same heart procedure as me, didn’t think like me, were a lot older than me, or all of those things combined.
The trickiest part of the operation was getting to the heart. My ribcage had to be cut down the middle and pushed aside so the lungs could be deflated to allow access to the heart. The heartbeat would then be slowed down through cooling and medication so that it eventually stopped, with ice packs placed next to it so they could then cut into it and the whole valve could be removed and replaced.
The body needed to be prevented from starving of oxygen so a cardiopulmonary bypass machine (heart and lung machine) would be used to act in place of the organs. The machine would provide a constant pumping motion and push oxygenated blood through the body, much like the heart does, preventing any damage to organs.
Whilst all this would be going on I would, naturally, be dead with no heartbeat and not breathing. Only kept alive in a heavily sedated state by machines.
I found a few different operations for the procedure online. The first going in through the side of the body just under the ribcage to prevent opening the chest, but this wasn’t possible in my case. Another way was through a main artery in the leg by inserting a valve and pushing it up to the heart to crush the existing valve and replace it, again this wasn’t possible because it would only provide a temporary fix.
I was left to decide between a tissue or mechanical valve with a recovery time of six to twelve months.
The tissue valve would come from either a pig or cow’s heart (depending on the hospital you go to) or possibly a human heart if one was available. Once the valve was removed the tissue replacement would be sewn into place and start working just like a normal valve. After all the follow up appointments to make sure everything is going well I would be signed off with yearly check up scans (ECGs) to monitor the new valve, with no medication other than aspirin to be taken everyday as a precaution to help thin the blood. I would be free to carry on with activities as I wished, being aware not to over stress the heart too much. It seemed that life after the operation would be good and I’d be able to continue without any major restrictions.
The main reason for not having a tissue valve replacement is that it wouldn’t last and there would be no way of knowing how long it could be before it wore out, at which point another operation would be needed and the whole process repeated. However, I would be less likely to survive the operation the second time around. That valve may also not last long and so the same process is again repeated with much lower chances of making it through the operation. It would only be done a maximum of three times, with most people just the once.
I tried to get as much information as I could on the life span of a tissue valve, it seemed it could be anything from three to thirty years.
The mechanical valve however would be made from titanium and would outlast me, so only the one operation would be needed. The procedure is exactly the same. Due to the valve being made of metal however, there is a high chance that blood would get stuck to it as time went on, and form a clot which would either lodge itself to the value or break off and get stuck somewhere in the body resulting in a stroke amongst other things. To prevent this from happening I would take a blood thinning drug, the main one of which is Warfarin. This would be taken daily to control the blood clotting (production of vitamin K in the blood) with monthly hospital appointments for blood to be taken and the dosage altered if needed.
As the blood would be prevented from clotting I would not be allowed to do any contact activities as the risk of internal bleeding and damage to the body is high if not guaranteed (I’d bruise more easily and a small cut would take a long time to heal).
For example, that would mean no running due to the impact of the foot on the ground causing bruising, riding a bike because of the risk of coming off, and so on. There were some dietary restrictions as well; due to the medication I wouldn’t be able to eat cabbage or other green vegetables which are high in Vitamin K.