The shape of my heart

I had my appointment with the surgeon yesterday, so I thought I should write an update on what the plan is in relation to the future care and maintenance of my heart.

First of all, I probably need to explain what the problem with my heart was in the first place, in case anyone doesn’t already know. I was born with Transposition of the Great Arteries and a Ventricular Septal Defect (VSD). Translation: the arteries sending the blood to and from my heart were the wrong way round (right one on left side and vice versa)  and had to be re-plumbed. VSD is just the medical name for a hole-in-the-heart between the two ventricles. This had to be mended and the valve on the left side had to be replaced, because they had to create a bit of an artery as it had been in the wrong place/non existent, I’m not sure which.

Sorry, it’s a lot easier to explain with a diagram! I did have one but I left it in my drawer at work, after subjecting my long-suffering, lovely and supportive colleagues to an anatomy lesson about the strange workings of my heart.

The original repairs have held good for 26 years, but due to general wear and tear both arteries are now quite calcified* and hence narrowed and the replacement valve has been leaking for quite a few years now. As a consequence, my heart is having to work harder and harder to pump blood and if nothing is done it will fail.

So, the surgeon is going to re-do all of the things that were done when I had my original operation. He will put in a new replacement valve and a new replacement bit of artery on the left side and will re-do the  joining of the artery to the ventricle on the right side, which will include re-repairing the VSD. At the same time he will scrape out the calcium and other deposits that may be in the arteries and try and widen the right artery a bit more. I hope I’m getting this the right way round – I need the diagram!

The surgery is a bit more serious than I (and other people) expected it to be. We always expected that the valve would have to be repaired or replaced, but the problems on the other side of the heart only came to light after the recent tests were done. I think even the medical staff were quite surprised by it. My heart is in a weird position, so you can’t see everything on an ultrasound or even a CT scan. It was really only when they did the catheter test that the full extent of the damage was revealed.

The good thing is that the repairs they will do to the right side of the heart should be permanent. The valve will probably have to be replaced again in 10-15 years, but by then it should be able to be done via keyhole surgery, so hopefully there will be no need for me to have open-heart surgery again.

The surgeon said that the surgery should be done within the next five months, as I’m now on the waiting list. I’m trying to remain calm about it all, but if I have no distractions and sit and think about it (e.g. while on the train!) I just want to run away and/or curl up in a corner and cry! It has to be done, so I just have to accept it and find some way to deal with the worry as and when it surfaces.

So, there you have it, you are now fully updated! I hope I’ve managed to explain everything sufficiently. Trying to explain it all to other people actually helps me to understand it better, which can only be a good thing.

*Calcification – build up of calcium deposits mainly caused by the corrosion of the replacement valve and the patch on the join/hole…I think.

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14 thoughts on “The shape of my heart

  1. Sorry to state the obvious, but that sounds big. Flip. What is the usual recovery time for that kind of operation?

    I think I should start making you a CD of Nice Tunes and collect some entertaining cards with which to amuse you while you are in hospital. I have just had another brainwave idea too. Hmmmm. Yes. A plan is hatching. 🙂

  2. Hello, S. If it goes perfectly I should be in hospital for 10 days-2 weeks, with about two months off work for recovery, although I might be able to go back to work part-time before the end of the two months, depending on how I’m feeling.

    The plan sounds intriguing!

  3. I hate waiting lists. Having to wait five months for Big Scary Surgery, with nothing to do BUT wait, oh, if only it were avoidable. If only. What can we do to keep your mind off it?

    Thinking of you and your brave little heart, soldiering on.

  4. Sounds terrifying! And waiting is such a nightmare… hope you can keep busy in the meantime.

    I have TGA too and am trying to work out which op you had – was it the Rastelli? (I had Mustard and your description doesn’t sound like that one…).

    Best of luck and hope it is they last time they need to do it.

  5. Lilian, I wish you well with this. You seem extremely calm about it, no doubt an attitude you have developed over the years with all the other operations.

    Being my usual flippant self I have decided, in future, to think of you as the Tin Man in the Wizard of Oz! (Who actually had a heart all along!)

  6. Hello Anon,

    Yes, the operation I had was the Rastelli. Thanks for your comment and hope that you are well.

    Music Man, I’m not sure that I am calm really – it’s all an illusion! I will take being thought of as the Tin Man as a compliment!

  7. I am fine thanks. A diagram of Rastelli is here:
    http://www.rch.org.au/cardiology/health-info.cfm?doc_id=3572

    Just re-reading what you’re going to have done. That’s a big operation – no wonder you are scared. But you got through it first time round when you were much smaller & weaker, and technology was less advanced so there is every reason to be optimistic about this time. Not that it makes it any less scary of course…

  8. Hello, glad you’re ok. Thanks for the link to the diagram. Yes, I have been thinking about the operation and, although it is scary, you are right about me being stronger now and technology is a lot more advanced than it was in 1981! Thanks for your support.

  9. Hi Lilian,

    My son was born with Transposition of the Great Arteries and a Ventricular Septal Defect 4/25/07. He has also developed a mild leaky neo-aortic valve and that is being monitored. I appreciate you writing about your current experience with this disease. It’s helpful for me to see others who have had this condition and are living normal productive lives. I hope all goes well with your operation and you will be in my thoughts and prayers.

    Warmest Regards,
    Wendi
    http://babyluke.wordpress.com

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