This led to my being in heart failure as the blood was not flowing well. My ankles and other areas of my body were swollen due to retained fluids, including internally. I was short of breath and yet when I went to the doctor thinking it was my asthma they said my lungs were clear. I had trouble breathing and coughed a lot when I lay down so slept with multiple pillows. I was coughing and wheezing, but my lungs were clear. I was tired or fatigued and yet my iron level was fine and my thyroid was fine. My heart often felt like it was racing, but that was normal (or so I was told). I was not eating much, but gaining weight, and feeling bloated. I was told to exercise more. We road almost 1,000 miles on the bike the summer prior to my diagnosis and I worked out, but I needed to exercise more? My brain was foggy, but I figured it was because I was tired, little did I know it was actually related to my heart. I was not sleeping well due to sleep disturbances. I had a few twinges in my shoulders and arms, but thought they were from over doing, or that the bike seat needed to be adjusted. I also put off a few chest twinges to stress as they came and went quickly and I was very stressed between work and my father dying of cancer. They never lasted so I never thought of them being related to my heart.
No one ever put all these symptoms together, even though I asked my doctors. I even asked about my circulation because my feet were always cold. Sure I had high blood pressure and retained some fluid so they gave me blood pressure med and water pills. It helped but the problems kept getting worse. I could not climb a flight of stairs without getting winded halfway up. It was not until the chest pains started and were bad that I went to the doctor and got real tests and real answers.
It is scary to think I could have died, just dropped dead. Only 1 to 2% of the population has this defect and most do not know about it until they are dead. Actually they do not know, their families do. I was one of the lucky ones. I had symptoms. It just took along time to get the doctors to put the pieces together. Please if you have symptoms, push for testing. Do not wait. I could have died if I had not finally had chest pain and would have been much better off if I would have gotten this diagnosed before I did. I was a walking zombie by the time I was diagnosed. My husband has said many times he does not know how I kept on going as bad a shape as I was in. I do not know how I kept on going either. I was just functioning on autopilot and really most of the last few months prior to my surgery are a blur as I was just there. I slept for hours on end just to make it through a day of work and came home to sleep.
In fact now that I think about it I probably should not have been driving because I know my reflexes were not their best. My brain was not focused and I was not my best at anything. I was just functioning on autopilot. I was in bad shape and am very lucky to be alive today. I was blessed and thank God for my being here and for my health.