The Fear

It's almost a month before my operation and I'm not scared one bit. I say this honestly, not trying to put on a brave front or with the intention of saying 'look at me, I'm tough'. It really isn't a big deal to me. People have spoke about feeling light headed when thinking of the operation, unable to stand. I wonder if more closer to the time, when I'm in my hospital room the day before the operation, maybe then I feel some of this fear. But right now it doesn't seem like a big deal to me. When I tell people I'm having a heart operation I always find myself following up with the phrase "It's really not a big deal, the risk is like 1% and it sounds worse than it actually is". Am I mad?

I will admit however, when I first found out about the operation I was in a bit of a daze. But that lasted all but 5 minutes. Why so short? A bird decided to leave it's 'white mark' on me as I walked down the street and I couldn't help but laugh.

Maybe it's me. Maybe I'm just a rather passive person...I'm not sure this is a good thing however.

P.S. Am I the only British patient who didn't have their condition fully explained to them, or is this common in our country? I was always told that my condition was not too serious and that it could be fixed with the old 'balloon in the heart' operation. The first I heard about open heart surgery was when I was told I needed the operation. I really love the NHS for many things, but the lack of involvement I've had is really frustrating. Lucky for me I'm aware of how it works in America so I'm more proactive in engaging with doctors, doing research online (finally I can put my Research degree to use and easily understand the journal articles!).

Choices, choices

It's an dilemma that many have faced - what type of valve should I have. Once you know you need a valve replacement you will be offered the following choices: tissue valve or mechanical valve. Simple right? No.

Tissue valves can come in the from an animal, a human donor or even yourself (i.e. the Ross procedure, where a person's pulmonary valve is used to replace their aortic valve). With a tissue valve you won't have to take any medication and can leave a relatively normal life assuming things go correctly. However they have the drawback of only lasting a certain amount of years, usually around 10. After that another operation would be needed. Mechanical valves on the other hand are intended to last life long meaning one operation. The drawback? Taking the drug Warfarin for the rest of your life to keep your blood thin and prevent strokes. But also continually monitoring your level of medication to make sure you don't have a hemorrhage. The other problem is increased bleeding from cuts, more bruising, and avoiding contact sports.

So, that's that (and if you're a patient I'm sure you've heard this all before many times). Now when I was first told about this my initial reaction was to go for a human valve. At 22, being on Warfarin for the rest of my life really does not seem appealing. It would mean around 60 years, touch wood, of fretting about knocks to the head, blood tests etc... But thinking about it more and more... I've read about so many people having problems with tissue valves - leaking etc. There's also the fact that tissue valves degrade quicker in young people. If a valve only lasted 8 years that could in a (excuse the pun) heart beat. I would always have it in the back of my head, counting down...

More recently I've heard about a certain type of mechanical valve - the ON-X - which is being used in America at the moment. They're running clinical trials to test how well the valve works without Warfarin, or with patients taking aspirin. The research is in its early stages and I should be very sceptical as there are no concrete results out just yet...but I can hope right? However, although the ON-X is becoming fairly common in America, the U.K. has not caught on just yet.

Americans seem to be heavily involved in choosing the type of mechanical valve they have. Which isn't surprising given that they have to pay for the surgery! But in the U.K. the process is very different. Patients don't seem to have any say at all in the choice of mechanical valve. I got in contact with my surgeon and he seems very reluctant to use the ON-X valve. We're going to have a discussion next week about it but I don't hold out much hope of convincing him.

On a lighter note I googled a picture of my surgeon and I think he looks like Mr Spock. He seems to leer at the camera in a predatory way...I wish I could post a picture but that would reveal who I am! And you never know, he may just stumble upon this blog and decide to do a botch job of my valve as revenge!

The Beginning

What's the best way to start this blog? I guess I'll sum it up nice and quickly:

• I'm 22 years old, male, from London.
  
• I have aortic stenosis (which means my aortic valve is narrowing over time). If left untouched it would eventually close up, which is not good.
  
• I'm scheduled for surgery on the 6th of May, 2009.

So, why this blog? Well for the most part I felt it was important to share the process of getting an aortic valve replaced, for future patients who just might happen to come across this (assuming this blog will get any visitors!). There's also the fact that I'm only 22 and as egotistical (is that the right word?) as it sounds, I think that's a pretty rare thing as the majority of patients are a fair bit older when they have their operation. Finally, there's a lot out there on the internet about the experience of Americans in my situation, but the experience of British patients is kind of lacking.

Well there you have it! Stick with me on my journey and hopefully somebody will find this as useful read prior to their own surgery!