Monday, 1 July 2013

Life in Operations - Part 1

I think I've had fourteen operations all in all, which includes quite a few catheters, which are the smallest of all the operations I've had, aside from ones not connected with my heart disease. I have no memory of my early operations and I remember little from the later ones, it's only the very recent ones I can recall properly. I think I've blanked a lot of it out. I guess that's probably a good thing. So I'm not going to be able to give you very precise ages or exactly what they did for the earlier ones. I will warn you, this is going to be a rather long post. Actually I might do it in 2 or 3 parts because it'll take me a while to write and there won't be many posts going up here. 

I think my first surgery was after I burst my eardrum, I had surgery in my ear to put a patch over the hole, which didn't give me back any hearing in that ear but keeps the inner ear and anything else behind the ear drum nice and safe. It's quite probable that I had some sort of catheter before this as a toddler, but I'm not sure. I was two years old when I had this surgery. 

The ear infection effectively saved my life. I was due to have my open heart surgery and because of the infection they didn't want to do it. A couple of days after my surgery was due to have taken place, my surgeon came under questioning after concerns were raised the doctor was taking too long to complete surgery and the suspected rise in death rates this may have resulted in. I've not looked a great deal into this story but I know that his death rates were found to be higher than you'd expect. In open heart surgery the patient has to be on a heart and lung machine so that the surgeon can operate on a non-beating heart. However the longer you are on the heart-lung machine the higher the risk of brain damage and death. So doing surgery quickly is very important.

I had a nurse that said that the surgeon who took over, performed the surgeries so quickly and efficiently that it was hard to believe the children had actually had open heart surgery when they arrived at intensive care. I neither believe nor disbelieve what I've read and been told but I'm sure that whatever panel of experts decided that the surgeon was guilty of 'professional misconduct' probably knew what they were doing and I am just grateful that I had the brilliant surgeon that I did have rather than him. Who knows, the surgery might have been as successful as it was, but given his death rates I'm glad I didn't have to take that risk.

The surgeon that performed both of my open heart surgeries was Dr Ash Pawade who unfortunately retired from surgery a good few years ago due the beginnings of a tremor in his hands. He is now saving the tigers in Africa. Quite an amazing man even after he stopped saving the lives of babies and children with heart disease. My first open heart surgery was to patch up the holes in my heart. It was as successful as anyone could have hoped. 

I don't remember any of this accept later on in hospital I remember bubble painting. This is a physiotherapy exercise, in which you pretty much just blow bubbles in paint and it's designed to get the lungs going. I guess as I was only two I probably wasn't so good at the walking yet, let alone just after open heart surgery, so it was a good, fun way to recover. 

Unfortunately, because my heart is completely back to front they could not be sure of where the sinus node was in my heart. The sinus node is what keeps the heart beating in a regular rhythm. They made my parents aware of the risk of damaging it before surgery and unfortunately they did end up damaging it. So the next surgery was to fit a pacemaker. My heart had been regularly stopping and starting at night so I needed a pacemaker to keep the rhythm going and to stop my heart cutting out. I was three when I had my first pacemaker fitted. When fitting the wires they have to stop the heart the same way they do in open heart surgery so that the wires can be screwed into the heart. They have to be really careful where they put them in. I saw surgery of this kind on a tv program. It was really weird to watch it and think, "Oh god that looks really dangerous! Oh god they did that to me!"

Then, I started having difficulty swallowing so I had scans done after I'd eaten a kind of radioactive meal so they could see what was happening. I remember going there with my mum and the room being really cold and full of weird scanning machines. I remember that the nurse had white hair. I don't remember any of the scans or eating the radioactive stuff but I remember them giving me a banana, which had been dipped in a really disgusting custard and I remember my mum breaking off the top and throwing it away so I could eat the bottom bit of the the banana without any custard. And I remember eating it on the way home, sat in my booster seat in the front of the car. It seems a really odd thing to remember amount everything else but it's a really clear memory for me.

Anyway, they found out that all my abdominal organs were a bit weird when they looked at the scans. My left atrial isomerism, which effects my heart and means that it has too left sides (see my what is CHD post for more details) also effected my abdominal organs too. I have two left kidneys, my liver has two left sides and everything else was just floating about because it wasn't all packed in neatly like in a normal body because the organs aren't normal shapes or sizes. So they were really worried that my intestines were going to knot themselves or get knotted around another organ. I had what's called a laparotomy in which they carried my heart surgery scar down to my belly button, went in and tacked everything down so that nothing would be floating around anymore. They also took out my appendix while they were there to save any trouble with it in the future.

Apart from the occasional catheter, which is where they put cameras and other equipment into a major vein, usually the groin or the neck, in a similar way to keyhole surgery, and they take lots of measurements inside the heart by traveling through a major vein or artery into the centre of the heart. It's a relatively routine surgery for someone with CHD and/or PH. As I say, part from the occasional catheter I had a quiet few years from the age of three to the age of eight. So this is probably a good place to end part one of my life in operations. The next part will be up soon and there might be another part after that, depending on how much I write. But seeing as I can actually remember having some of the later surgeries, I'll probably have more to say about them. 

I hope this was interesting. Probably a bit shocking for people who know me, or knew me before I was in a wheelchair and know how healthy I look and seem. Never judge a book by it's cover.

Thanks for reading. 

No comments:

Post a Comment


Template by