Feeling scared - why have I waited so long?

[Numberone1]

I was diagnosed with severe aortic stenosis in No ember, saw a cardiologist and referred to Kings in January.

Kings did another echo and the figures were better. Because of this theyvwantted me heard by an MTD as to the next best course of action. They decided I should have a TOE and I still haven’t had it. It’s been cancelled and now I have it on Friday.

I’ve kept pretty calm and confident. I feel better than I did, fitter, more active and less out of breath. However I know this can’t improve on its own.

So can someone explain how I feel like this.

It makes me even more scared about the result. What if they find something they can’t treat. I feel so happy and without symptoms. Do I need to start worrying again while I have been waiting for the TOE feeling well.

Last but not least,how dangerous has it been for me to wait this long

Feel very low and very tired of it all.

[IanGordon]

Susan hi. I have just had my severe aortic stenosis (pseudo bucusped) fixed and have hypothyroidism and can the therefore empathise with your situation. I think we all have difficulties in dealing with uncertainty; in this instance diagnosis and time scale. But try not to speculate or get into a "what if?" mindset. As I've posted before, for me it was a relief that my stenosis was deemed severe after a TOE, which although unpleasant gives more accurate measurement of the aortic valve. I had some time to get used to the fact that surgery was inevitable but focused on the fact that this would restore my fitness and give me near normal life expectancy. Of course I worried about the risk of surgery but this was more than offset by my knowing that without it I would not last more than 5 years. So what I would say is focus on the upcoming tests as getting closer to getting your valve replaced which believe me is an enormous positive. I too had instances of 'it's really not that bad' but I was dipping into denial as my decline was escalating. You also need to appreciate that your cardiology team will not take risks with your health by delaying treatment. Time scale and action will become clearer after your TOE. So in the meantime, try to avoid negative thoughts and associated worry as you are in the system and will soon get a date for your valve to be fixed. Keep us posted as you move through the system and continue to use the collective experience and knowledge of this forum - in my experience, it will support you through the lows and make coping easier. Good luck.

[Suzy61Taylor]

I had my aortic valve replaced 4 years ago. I elected to have a mechanical valve. When I was diagnosed with stenosis I was also very hypothyroid, for which I’m now on a combination therapy of T4 and T3. My open heart surgery was a breeze compared to my thyroid problem. I’m slower maybe when I race but I now have the confidence to train and compete in events. My hypothyroidism can be unpredictable but I manage it as best I can. Hope all goes well for you x