So how did it go?
Well that is a longer answer. Read on if you want a rather detailed explanation. Think of this as a surgical race report.
The purpose of my surgery yesterday was to map the electrical activity of my heart using a catheter to see if the source of my ectopic beats could be located. If the source of the ectopic beats could be found they would then be blasted to smithereens using the catheter (gently burned away would be another way of saying it).
The way they do the surgery is that they wire you up to a whole bunch of machines that go ding. Pads on your chest and on your back to help them do the imagery and track the catheter. ECG. A bunch of other things that I had no idea what they did. A rather large TV so they can see what is happening. Quite the impressive set up. They then insert the catheter into one of the big arteries in your groin and away they go.
Once the catheter reaches your heart they start the mapping. This is the bit where they measure the electrical activity of your heart. I am not entirely across this, but this is my very basic understanding. From my ECG they have a good idea of what the electrical activity of my heart looks like when I get an ectopic beat. During the mapping I think they then probe around with the catheter measuring electrical activity of the heart during the ectopic beats. When the electrical activity being measured from the catheter matches the electrical signal on the ECG, at about the same time, then they know they have found the source of the ectopic beat. Time for blasting.
In order for this to work, you are mostly awake for this. Mildly drugged is the term I would use. You see one of the problems with this kind of procedure is that for it to work you have to be having ectopic beats during the surgery. If the ectopic beats don't turn up, they can't find them. Pack up and go home. This does happen. They don't know for sure, but there is a theory that if you are completely out under a general anesthetic, then it makes the beats less likely to show. For that reason I was awake during most of this procedure, although I will admit I was also asleep during big chunks too, which I didn't realise until after. Being awake is sort of strange, particularly during some of the more extreme heart rhythms and the burning. But it was also sort of cool because I could lie there and watch what they were doing on the big TV screen. A little surreal.
The other thing they do to make the ectopic beats easier to find is they stimulate your heart with adrenaline or an equivalent. The ectopic beats tend to be easier to find at higher heart rates. So during the procedure they are constantly giving the heart a nudge to try and kick off the beats.
Okay, clear as mud? Good. Let's kick on.
How did my ablation go? Well this is what I understand from what I can remember and what I have been told post surgery.
When they first got into my heart the ectopics were refusing to play ball. They simply weren't there. However, Dr Stobie figured that since he had the catheter in the heart they might as well get on with mapping. Start the drugs and get going. First thing that happened is that my blood pressure went high in reaction to the adrenaline equivalent. That was not good, so they gave me a drug to bring my blood pressure down, so that they could get push it back up with the stimulant. Apparently that was a first for Dr Stobie. First for me too so I know how he felt.
After they had done the mapping for a bit they did find one source of an ectopic beat, however, strangely enough the electrical signal from this ectopic beat didn't match the electrical signal that had been measured previously during my Holter Monitor etc. Also this ectopic beat was less frequent, showing up every 40 seconds or so, rather than ever 5 or 6 seconds like I usually had. What this boiled down to was that they had found the focal point of an ectoptic beat, but it wasn't the one they had been looking for. Search on.
As the mapping continued, this happened again. They found the focal point of an ectopic beat but it wasn't the frequent one they were looking for.
During the mapping they also found something else a bit unexpected.
While they were mapping they found a section of the heart that they couldn't get near. Every time they went near it with the catheter my heart went crazy. Simply nuts. Trust me I felt it, and that is the best way to describe it. Heart rate all over the shop and very high (up to 200 bpm or more), no rhythm to the beating, just lost the plot. Even with virtually no artificial stimulation from the adrenaline equivalent it was still doing it. Not good (or comfortable) is what it was.
The crazy section of my heart was about 3cm x 3cm and because it was so sensitive they couldn't map it. After a bit of head scratching and conundrumming (which I mostly slept through) they managed to keep that section of the heart still long enough to map it. When they map the electrical activity of your heart, they are measuring the voltages of the heart's activity (the heart creates a current as it contracts). When they mapped this section of my heart they found the voltages were low sometimes referred to as LV (low voltage). I never got a good answer on what LV sections of the heart mean, but basically it means that something isn't right with that bit of tissue, it is damaged, or scarred, or something. They are also indicative of greater cardiac risk, but I will get to that in a bit.
While they mapped the LV part of my heart, they also found another ectopic beat focal point and this time it matched what they were looking for. And they blasted it. In the end they ablated about a 2cm x 2cm section inside the right ventricle. The good news. When they did it my heart completely settled down back into nice gentle sinus rhythm. Success. Sort of.
What does it feel like to have somebody gently burn the inside of your heart while you are awake? Sort of like you might imagine. Can you feel it? Yes. Does it hurt? Well it doesn't tickle, but I wouldn't' say it was painful. Some of the longer, hotter burns got a bit sore, but mostly they felt like an ache inside your chest.
What about the other ectopic beat focal points that they found ealier, did they ablate them? No they didn't and that was for a couple of reasons. The main reason is that they couldn't find them again, they refused to come back after being found originally. The second reason was the Dr Stobie felt like they had already burned enough for one day. During the procedure I remember seeing what they were doing and thinking, this isn't what I was expecting, I was thinking they would be burning a little bit of my heart and it looks like the are BBQing the entire thing. Dr Stobie was thinking exactly the same thing. He felt that to ablate more would be going too far outside what we had previously discussed, so he stopped.
3 and a half hours later. Job done.
When somebody told me it had taken three and a half hours is when I realised how much I had been asleep. Up until that point I thought I had been awake the entire time, but I reckon I was asleep for at least half of it, probably more.
So where does that leave me?
Early days is where it leaves me. Last night Dr Stobie came and saw me and said we wouldn't know whether they had got all of the ectopics, some of them or none of them until the heart had healed a little.
During the ECGs this morning it seemed fairly clear that the ablation got rid of the main source of the ectopic beats, but not all of them. Remember that first focal point they found, the one that was firing an ectopic every 40 seconds or so, it seems like that one is still kicking along. So the wonky rhythms are still happening, but they are a lot less frequent and during normal day to day activities I haven't really been noticing them. So things have improved. Sweet.
The other thing that the mapping has shown is that LV area of the heart. As I said before, what that is from is a bit unknown. That sounds strange, but the reality is that in cardiology these sort of extreme exercise induced heart problems are quite new. There simply isn't that much known about them. What is known is that when somebody dies from sudden cardiac death they usually have these areas of LV present in their heart. Whether the LVs are caused by the stresses of exercise, or by changes in the heart's structure due to exercise, I don't think anyone really knows yet, but they are considered a sign of risk.
So that question again, where does that leave me?
It leaves me with some very hard questions to ask, although to be honest I think the answers are fairly obvious.
This is how Dr Stobie explained it to me.
Nobody knows what my risk of death is. There simply isn't enough known about this condition to be able to put a number of my chance of cardiac failure. However, there is a condition Long QT syndrome which is a heart condition that can effect kids. Long QT can cause cardiac failure during exercise. As a result the current guidance in Australia is that kids with Long QT can't take part in competitive sport. Dr Stobie explained that the risk of somebody dying from Long QT isn't actually that high, but nonetheless the guidance remains the, kids with Long QT can't play competitive sport.
Dr Stobie told me that nobody knows what my chance of cardiac failure is, but it is higher than the kids with Long QT. And they aren't allowed to play competitive sport...
Nobody is going to tell me to stop though. If I wanted to push on and keep racing, I could (although race organisers might have something to say about it). As Dr Stobie explained it, whether or not I keep racing comes down to my own tolerance for risk. The risk is there for sure, it comes down to how I feel about it. A single guy with no family might have a very different risk tolerance than say a 37 year old guy with a wife and two kids.
This may seem like a conundrum, do I take the risk and keep racing or not, but really there is no question. For me the answer is fairly obvious. No risk is tolerable when it comes to being around for my wife and kids. If the choice is them or racing, then the answer is always going to be them.
So what now then?
Well things aren't quite as done and dusted as all that.
Firstly I have another chat with Dr Stobie coming up this weekend. He is going to present my case to some of his colleagues and ask for their opinion. Is there a risk there or not? See what they have to say.
If the consensus is that I should stop and I decide to take that advice (which currently seems like self preserving thing to do) then it will be time for a break. A long break. Dr Stobie is currently thinking about 3 months of no real exercise. Just walks with the kids that sort of thing. Completely detrain, let the heart heal and recover.
During that three months there will be some more tests, firstly in a couple of weeks time (once the heart is healed) and then again at the end of the three months. These tests will give an idea of how the heart is recovering, whether I am still getting ectopics and if so how many.
If things have improved at the end of the three months, and studies indicate that they should, then I should be okay to return to moderate exercise. What that exercise looks like I don't really know yet, but getting out riding with friends etc should be possible.
Also if things have improved, and I am not looking to do anything silly in terms of exercise, then further ablations shouldn't be necessary.
So that is about that.
I will know more in the coming days, but as it stands I am not expecting much to change in terms of the way forward. Given that I guess this is it, racing is done, at least in the short term and almost certainly as a pro.
And you know what? I am okay with the decision to not race anymore. I am okay with it for a number of reasons and not just because of the risks associated with continuing.
But I think those reasons probably deserve a post of their own and so that is what I will write about tomorrow.
No comments:
Post a Comment