Heart update

I went to a new cardiologist, Dr David Liang from The Stanford University Center for Marfan Syndrome and Related Aortic Disorders on Monday. As you can probably guess from the title, he's an expert in aorta problems, with a particular interest in problems caused by genetic issues.

As you can probably also guess, he's the perfect person for me to be seeing! Both Dr Liang and his nursing staff were fantastic. They went through and did measurements and checked me thoroughly for any physical signs of any genetic conditions they know about - such as checking the roof of my mouth, and the little dangly thing at the back of my throat, as there's specific conditions that affect those parts of the body! It was really interesting, and they filled me with absolute confidence that they knew what they were doing. While my cardiologist, Dr French, back in Canberra was also excellent, these guys are specialists in this field, and know exactly what to look for.

Dr Liang looked at my results from previous tests that I had, as well as the cardiac MRI I had just before I left Australia, and confirmed that the measurements of my aortic root showed that there's an aneurysm there. The upper limit of normal is 3.7cm for someone my age and height, and mine's around 4.2cm.

It's not considered serious enough to operate until it reaches at least 5cm or so (unless it grows a fair bit in a short time, in which case they operate earlier). It's hard, because everyone is different, and in some cases they operate earlier, other cases, they operate later. We're trying to find out at what size my dad and aunt's aortas were when they split (as my enlargement is in the same place theirs split), so odds are mine will very possibly follow the same trends as theirs.

It's a bit frustrating because they can't do anything at the moment, because fixing it means open heart surgery, so because of the risks of that, they won't operate until they feel there's no other choice.

At the moment they have no idea what mine's doing. It might have been this size for years and might stay this size forever, or it might be starting to get bigger. So for the moment I have to stay on beta blockers, keep my heart rate under 120 bpm. Dr Liang found it hilarious that I bargained with Dr French to let me exercise up to 130bpm, but said that's probably a bit high, and to stick to 120bpm, and don't get to the point where I feel as though I'm straining during exercise.

I also need to keep going back for regular echo's to keep an eye on things, and just try not to worry too much. I'm actually a lot less stressed about it then I thought I would be. When I first got the results from the cardiac MRI back in December, I looked at the measurements and realised that it probably meant I had an aneurysm, and had a freak out then, and kind of dealt with it at that point, so when Dr Liang confirmed it, I was ready for the diagnosis.

I feel very relieved to have it confirmed, rather than having the previous "maybe" diagnosis, and I am also a lot more comfortable knowing that I have Dr Liang and his team watching over me, knowing that they successfuly deal with these sort of cases all the time. I'm also getting a Medic-alert type necklace to wear, so if something does happen, medical people know what to look for, and to call Dr Liang's office to get him involved immediately.

So while it's not good, it's not THAT bad either :)