Visit to the Specialist Cardiologist

Wednesday was my first visit to the Cardiac Specialist who’s care I will now be under, once again I have come out with mixed feelings about the whole affair, but purely on an ignorance is bliss basis, and lets face it I wouldn’t be saying that if I had sudden complications and a rather fast visit to the nearest hospital.

Its just, I don’t know, it churns it all back up again, we’ve had a good few weeks, one week without any phone calls, letters or appointments, and then off I go and it all rears its ugly head again!

Because our diagnosis is so new, we are still undergoing all the tests and investigations, and it feels so intrusive, don’t get me wrong I’m not complaining as I have nothing but praise for all the health professionals who have dealt with us so far, it’s just I personally want to take command of the situation (control freak talking here) and I have to accept that that isn’t going to happen until all the investigations have finished and the monitoring has started.

Anyway, it appears that my Mitral Valve Leakage is of no consequence right now only 1 on a scale of 6, but my Aortic Dilation is not great it should be around 38mm. It is 45mm. So I’m off for a MRI as due to my concave chestbone (a common Marfan thing) She was unable to see clearly just how far the dilation goes up, so I’m off for a lay down in a noisy tube at some point.

I will be starting on Losartan, something that has in some places been dubbed the ‘Marfan Wonder Drug’ which should at the very least help stop the growth of my Aorta, perhaps if I am lucky even reducing it, but it will be nine months before the next scan and we shall see then.

She is also referring me to an eye specialist, as I am severely short sighted and she wants my eye health to be assessed to give her a clearer idea of just how affected by this syndrome I am.

So thats where I am now, waiting for mine and my daughters medical alert tags to arrive in the post, and then we can get down to making them some nice beaded neclaces / bracelets to go on!!

Tallest will have her appointment with the Paediatric Specialist Cardiologist on December 1st, he works closely with my Specialist so there is some continuity of care there which can only be a good thing. The Tallest’s heart is not in as good a shape as mine, and I think that half my worries from Wednesday are just what will be said to us as a family in December, she is more affected by Marfan than myself, and I keep finding that there are a lot of ‘what ifs’ in a situation like this, and you just have to remember not to drive yourself mad thinking about them.

I just have to take a leaf out of her book, she doesn’t let it worry her so neither should I (easier said than done isn’t it?!).

Marfan Syndrome

This is the swiftest of swift posts other wise there’ll be a riot on my hands but just to say that both myself and my Daughter have had a confirmed diagnosis of Marfan Syndrome, which will mean a lifetime of monitoring as it has associated heart conditions which she and I share.

I just wanted to take the opportunity to jump for joy, as although its not what we wanted hear, at least we have some answers now.

I personally will be embarking on a new exercise regime, so I will keep all posted as to how that is going.