Chapter 7 : Putting It All Together

“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.

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Chapter 14 : The Answer

I have decided to include an extra commentary on this chapter as I feel its important to remind the reader that the decision I came to is based on personal experience and the surroundings I had at the time. There is no definitive answer to the question ‘which valve would you choose?’ as the choice will always be personal. My wish is not to influence someone else’s decision, only depict the struggles and questions I was facing at the time and how I came to a peaceful resolution. 

No one was willing to give me their answer. What would they do?  Which valve would they choose?

I guess they felt their opinion may influence my judgement and they couldn’t accept the responsibility of that.  The entire medical world was pushing me towards the mechanical valve on the basis that an operation of that severity would only ever be given as a last resort, so the possibility of two should be avoided at all costs, which I did agree with.

I had three options as I saw it; I could have the mechanical valve, the tissue valve or no valve at all and simply see how long I survived.  Even if I had the operation there was no guarantee of surviving.  So in fact the part I had to make peace with was that in any scenario I would either wake up or I wouldn’t, and that I could be happy with.

It was something I meditated on daily.  I allowed this sense of calm to come over me and carried it on through my activities as best I could.  I couldn’t get my head around the idea of Warfarin and the restrictions I felt it would put on life.  The mechanical valve seemed like a great idea but nothing else surrounding it did. It was as if I was fixing one problem and creating another one.

I thought ahead in life as best I could, hoping to be able to go snowboarding again as I missed the mountains. I wanted to ride my bike and live life not feeling burdened by monthly hospital appointments with daily medication and injections.  Having just turned thirty I still felt the need to embrace a life of living.

The people I communicated with online who had a mechanical valve said it was fine and something they quickly got used to, life changes all the time and you adapt.  I felt as though the mechanical valve was like resigning yourself to a certain fate; a definite circumstance that could be avoided.

Medical advances are being made all the time in huge leaps. In ten or twenty years who knew where we would be and what the possibilities could have become?  Perhaps by then they would be able to grow my own valve, I thought.

My sister has type one diabetes so she constantly injects herself regularly to balance the levels of insulin in her body. A daily log is kept of her levels and the dose is altered accordingly.  Every now and then she goes to hospital or the doctor for check-ups.  We lived together for four and a half years so I was very familiar with the disease and how she had to change things because of it. It wasn’t something she was born with; she was diagnosed in her early twenties. Living with a type one diabetic brought the decision I had to make home to me, about what it meant to be continuously beholden to medication, and I imagined how it might be for me in a similar situation.

I had a choice about the future I wanted to have, and she never did. I could have the mechanical valve and be like that or not.

I kept thinking that it wasn’t just about the heart. There was all this emphasis on the heart and the valve but the body is a whole organism, all connected, not one part is separate from the other. It’s about a healthy whole, not just the heart. 

It was about two weeks before the operation date and I came to the conclusion I would rather have quality of life over quantity, so I decided to have the tissue valve.

Chapter 30 : Feeling Good

“All the decisions I had faced and torment over the procedure, the questions, doubts, uncertainty had now been realised and vanished.  A huge sense of relief came over me and I took great satisfaction in my own beliefs and way of thinking.”

 

It had been just over a year since the operation. I was feeling well, strong and active, living a good life.

The first annual check up scan was around the corner.  It seemed a long time since I had been to a hospital and the operation was a familiar but distant memory.  I was confident about my overall health although the appointment made me question it. What if things underneath weren’t as they seemed?  What would happen if the results came back with bad news?  I pondered this more and more as the appointment got nearer and reassured myself that I was in tune with my body.

The date arrived and I went back to hospital for an ECG scan. It was in the same part of Bart’s where I had my first scan after the operation. This time it was much further down the corridor, which seemed strangely dark and very long, like a tunnel with no end.  This old part of the hospital was slowly being renovated and it was clear things were being moved around to accommodate the changes.

I sat in a makeshift waiting room which was equally dark, with a few chairs in it and not much else. It wasn’t long before I got called through by a young female nurse who was very chatty. It was the first time in a while I had heard someone say: “you’re a lot younger than most of the people we get in here!” and I remembered how accustomed I had become to that phrase. We started talking and she told me she had been doing this for a while having moved around within her field of expertise from role to role and was now contemplating a change.

I sat down on the bed which was tucked up close to the wall in a corner, took off my T-shirt and she placed the wire patches on me. I then lay down with my back to her staring at the pale green wall right in front of me.

“The gel’s cold,’’ she said, and placing the scanning instrument on my chest the examination began.

I stared at the wall which was cold and bare with small bumps of rough plaster on its surface reminding me of a barren wasteland. It seemed to reflect how I was feeling as I lay on the bed; alone, sad and empty.

I was transported back to the time just before the operation and remembered things I had forgotten. Emotions rushed out from my gut and head and tears gently made their way to the corners of my eyes and drifted down my cheeks, leaving a sense of sadness in their wake. A trail of history was etched on my face in the form of two clear, lonely roads.  It wasn’t pleasant to be here again.

The examination was completed and as before there would be a thirty minute wait while the results were prepared and sent through to the surgeon or a member of the team.  I was directed out and into another building. This was the new, modern hospital that had recently been completed, with a big central atrium which allowed lots of light in and felt very spacious. There were plants dotted around adding an uplifting feeling; it was a hive of activity, quite the opposite of the old hospital with its dark and cramped rooms adorned with thick heavy walls.

I took in my new surroundings, trying to understand that this would now be part of life and once a year I had to come back and do it all again so they could keep a close eye on how the valve and I were doing.

I got called in to see an Italian doctor who was very welcoming. He was wearing round glasses, had short, black curly hair and a few days’ growth of stubble on his chin. He reminded me of the A&E doctor I once saw.

He asked how I was doing and how I had found the previous year. We had a pleasant conversation, chatting about life and my recovery and he then went over the scan.

‘‘Everything is fine, it’s all working perfectly,’’ he said with assurance. Immediately an internal release of tension flowed through my body in a wave of relaxation and joy.

He explained there was no need for me to come here again as this was where they fix people; it wasn’t for check ups and the medical view had changed: “we, the surgeons are like car mechanics, we fix you. We are not part of the diagnosis, treatment, aftercare or preparation. As you are well there is no need for you to come back.”

He went on to say: ‘‘you are the best doctor and the only person who really knows how you are feeling, so stay in tune with your body and you’ll know if you need to come back.”

It was music to my ears and I instantly took reassurance in how I had felt: “I knew it!” I thought.  This was exactly what I had been thinking and feeling all along, I would know if things weren’t going well.

I decided to open up to him and explain how I felt. I couldn’t see the point in all the check ups and going through this process once a year if I felt good. The experience itself wasn’t pleasant and I didn’t want to feel as though I was going through it all again every year. It would be as if I could never let go, forget or move on. It was a constant reminder of what may be around the corner.

Up to this point I had also continued to take aspirin every day to ‘thin the blood’ as a precaution and I spoke about this and whether it was still necessary.   With a confused expression he frowned at me and said: “no, you needn’t take it. Although I will refer you to the cardiology team to make sure. The cardiology department are best to advise on this, so to be certain go and see them.”

We carried on chatting and as I was preparing to leave he said: “If you don’t mind me asking, why the tissue valve?”

I looked at him, smiled and said: “way of life, the freedom to choose and live how I feel.”  He nodded his head and told me to go and do anything I wanted and live life as I saw fit.

In the space of fifteen minutes I had been told I didn’t need to go back to hospital for any check ups, take the daily medication I was on and to live life as I wanted.  What a fifteen minutes!

All the decisions I had faced and torment over the procedure, the questions, doubts, uncertainty had now been realised and vanished.  A huge sense of relief came over me and I took great satisfaction in my own beliefs and way of thinking.

I went to the cardiology department some months later after finally getting referred and spoke with a specialist doctor about everything.  He was unaware of the meeting I had a few months earlier so I explained why I was there, to just discuss if I needed to take aspirin daily.

He confirmed I shouldn’t be taking any and seemed confused about why I had been for so long.  I pressed him on this, “are you sure? I remember for certain being told that I would have to and that the surgeon himself had said so.”

“Ok let’s see if we can clear this up then,” he said.

To my complete amazement he got out his mobile phone and called up Dr Li (the surgeon) right there in front of me and explained that I was sat in the room with him and my concerns over not taking aspirin anymore.

I could hear the surgeon speaking and he said that I didn’t need to take aspirin everyday, it would have only been for a few months after the operation and it seemed there had been some confusion.

In my head I shouted: “YES!”

“Good I’m glad we cleared that up,” said the doctor. He then went on to say he was going to book an appointment for my next ECG scan in a few months.  I paused for a moment and then explained further the appointment with the Italian doctor, not only did we discuss the daily intake of aspirin but also that I wouldn’t need anymore scans. I would stay in tune with my body and come back at a later date or as and when I needed to.

This doctor was not keen on that idea and felt I should have them every year. I explained that I felt that I would know if my health was deteriorating and if this was the case I would get in touch to start having tests. I put it to him: “believe me, you know when your heart isn’t working.”

He understood although came from another perspective, explaining that it takes time to prepare for an operation.  I would need to have all the tests again and it’s best not to rush that process: “the more time we have, the better. You will also need to prepare your own life with family arrangements and we will need time too.”

He continued: “you could leave it so long that your health is in such a bad way that we only have a short time to prepare for the operation and that isn’t good. The more time we allow to do tests the more prepared we and you are so it is more likely to succeed.”

I hadn’t thought about it from this point of view; he had a valid point.  It does take time to prepare for something of this magnitude and I wouldn’t want to be rushed into hospital unprepared.

We carried on chatting, agreeing it was best he signed me off and in a couple of years I should come back for a scan, even if I felt well,  to see how things were going. If the scan results were fine I could then come back in a few years. If it wasn’t and there were signs that it needed to be monitored they would schedule yearly or six-monthly appointments.

This felt so much more manageable and made sense to me. I would come back at my own will to see how I was doing; no pressure, no build up.  I felt that this way I could forget about it and carry on with life without having the thought that every year there would be more tests. 

This gave me the sense of freedom that I had wanted, that I had fought for and had ultimately chosen to live for.