Kylie's Journal

He is sending me for a stress test, blood test, chest xray and I'll wear a 24 hour heart rate monitor, he also wants my doctor to arrange a sleep study. He doesn't think any of the symptoms I am experiencing (breathlessness, chest pain, feeling faint, fatigue, and more) could be caused by my moderately leaky aortic valve... I'll get all of the tests done and then find another cardiologist, perhaps for a second opinion or perhaps I'll wait until I need another check on it, depending on the results. I didn't like his bedside manner at all, he would ask a question and then cut me off in my answer. He seemed to have a set routine he wanted to work through and any deviation was an unwanted disruption. He assumed I knew nothing. I was open to hearing his explanations as he may have been able to make things clearer (he didn't!) and for Brett to hear how it all works as he hasn't done as much research as me, but I found his manner a bit patronizing. So no answers for now and just more wait and see, which is sort of what I was expecting.

My first cardiologist appointment is on Friday (Aussie time!), my list of questions just keeps getting longer and longer. I find myself wondering if every little thing is about my heart. What is a symptom, what is me just being hyper vigilant. Why am I thinking about myself so much!!! My chest hurts, on and off. I'm weaker and more breathless some days and some moments than others. Is it possible for symptoms to come and go or if the pain or the breathlessness was a symptom would it be more steady? My parents treated me as a hypochondriac, something was always hurting (I think I am just more sensitive than most!). To add to that I have been suffering weird symptoms for years with doctors unable to find a cause. It seems now a lot of it can be pinned to my heart, but because of all this doubt I am still wondering if it is "all in my head". I have to keep reminding myself that there is something real that is wrong with me, the echocardiogram proves it. Now just the agonising wait to find out how bad and what it means for be in the short and long term!

My heart journey has just begun. I've recently discovered I have a leaky aortic valve, with moderate regurgitation. I'm now waiting on my first ever cardiologists appointment (this time next week). It's a strange feeling (as I'm sure you all know!). I've been struggling with fatigue, dizziness and weakness, along with other strange symptoms for a few years. I've been tested for MS, lupus, mini strokes, nasty viruses and a host of other things. My doctor was ready to right me off as having fybromyalgia and then this popped up out of the blue. I'd seen a random doctor in the thick of a anxiety attack (another long and convoluted story... ) , while she examined me she heard a soft murmur and recommended a echocardiogram. I didn't think anything would come of it, just another test to add to my long collection of tests! The guy who performed it told me what he was finding as he did it. So while I waited for the cd to take back to my doctor I did some googling and had my first realisation that open heart surgery was most likely in my future. My feelings are so mixed. On one hand I am relieved there is a reason for how I have been feeling, it's not all in my head! I am also very grateful it is something with a "cure" unlike facing a future with MS or the other things I have had to contemplate. On the other hand I don't want a broken heart Does anyone else feel this way? Of course I am concerned and in some moments terrified of open heart surgery, but at the moment I am just feeling sorry for my heart. My heart, the place that holds my love, the organ spoken of in tenderness, the place of my soul. I am sure none of these feeling would be coming up if I was facing surgery on my kidney! I've read some of your stories and look forward to reading more. I am so glad you are all here, it is comforting to know folks who have walked this road before. I am reveling in the signs from the universe that it will all be fine in the end. I'm an artist and I'm currently working with nature. In retrospect I can see nature has been sending me hearts for months. I'm not normally a "love heart" sort of girl, but I've been picking up heart shaped leaves, finding fallen timber & rocks that look like anatomical hearts and taking photos with heart shaped light, so many signs how they were missed I have no idea. So when my current body of work is wrapped up (opening night is the 6th of March) it seems I shall be working with the heart! I'm about to start my list of questions for the cardiologist... Any advice on what to ask?