My Life: An Update

Okay wow this is going to be a much harder post to write than I thought it was going to be. Before sitting down to write it I thought that everything would just flow but as I stare at the screen it is very clear how hard it will be to put everything into words.

About a month ago I talked about finding myself again and throughout recent blogs I have alluded to my current health, especially mental health, but have not really gone into anything super specific. That specific post came a short while before I had to have my yearly checkup at the cardiologists in St George’s to see how my aorta, valve and heart seemed to be getting along.

For anybody that doesn’t know I have a condition called Marfan Syndrome that means everything in the body tends to stretch a little bit and has a habit of not going back again. This stretching includes the aorta and results in it continuing to grow and thin down with every beat of the heart and sometimes medication and the body can help to regulate it for years, decades and even a lifetime.

Unfortunately for me, unlike a lot of people I know that managed to hold out until their 30s+, my aorta has grown an additional 2mm from the last measurements that I had done from an MRI in October. This growth take me to 4.6cm which is above the “healthy” and “safe” 4.5cm recommendations and as a result the cardiologist has sent me of to the surgical team to get the ball rolling to have it magically repaired over the next couple of months.

Part of me walked into my cardiology appointment and expected the news as I could feel that something was wrong deep inside and I woke up telling myself that “whatever they say, just accept it”. It resulted in me sitting there all calm and relaxed during the discussion and then in the aftermath of stepping back into the waiting room to meet my friend and dash for some brunch just sort of playing it cool but deep inside I was a little shocked and worried.

The shock and fear came out a little that first evening as I tried to go to sleep and instead just cried into my pillow. It is not the worry about how it will impact me or if anything goes wrong what impact it will have on my life but more if it goes wrong or seriously wrong then the impact it will have on family and friends. Death itself is not something that I tend to fret about but much more the devastating consequences it can have on other people and that is something that I am struggling to see beyond here.

Because I have always known that it is a risk and something that will probably happen it does not feel any more real yet than it did before I knew. My cardiologist says I am at no more risk now than I was at the last measurement but that I do just need to take it a little more careful and make sure I do not just lift something even as a one off. When I meet the surgeon and I get asked to go to another MRI and any other tests then my feelings might start to change but I will admit that it has started to mess with my mind a little bit and is bringing me down a little bit because since finding out it has become obvious how out of breath, sweaty and chesty I feel after even just walking to work.

The surgery does mean that I will be recovering for a minimum of six weeks and can expect it to take up to three months for me to feel my usual self again. I will be doing an update at the bottom of this post, with an edit when I have something extra to say, and going forward I will let people know what the situation is but it does mean that when the time comes my blogging schedule might end up completely ruined (trying to be the pre-scheduling queen though!).

EDIT/UPDATE Friday 13th April: I met with the surgeon earlier this week and she confirmed that she wanted to proceed with the surgery, informed me of various risk factors and statistics and did a little basic drawing to explain the situation. When it had initially being mentioned to me the cardiologist suggested to me that I have a think about when it might work for me and to discuss a time frame with the surgeon but it turns out that the surgeon wants to act pretty quickly and said six weeks. On hearing that news I went on a shopping spree and a brunch eating mission because that is moving a lot quicker than I could possibly have expected.

EDIT/UPDATE Monday 23rd April: I had my MRI test at the end of last week. They had a slot become available on the Friday so gave me a ring on the Thursday afternoon to ask if I would be able to go along as they want to get the surgery done at some point in May and therefore wanted the MRI to be done as soon as possible to avoid any extra time pressures because of there being bank holidays in May. Whilst I am not that keen on an MRI itself because you are stuck in a loud tube for over an hour the thing I despised, and I do not use that word lightly, was that they failed to put in four of the small canulas and in the end the registrar had to put a larger one in on my hand… I may have cried and now be covered in hands and inside elbow bruises.

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