My story! It's a long one!!My story started way back in 1994 when I was first diagnosed with breast cancer. I had a lumpectomy and 6 weeks of radiation. It is that radiation that the doctors believe contributed to my heart problems. Then in 2010 I was diagnosed with a very rare cancer, Neuroendrocine Carcinoid. The stats for that are 1 in 100,000. It is even more rare in siblings. My older brother was also dianose with the same cancer. That led me to the National Institutes of Health (NIH) in Bethesda, Md. I entered a study down there for Familial Neuroendrocine Carcinoid. I go there once a year for all of my scans and tests. Shortly after this diagnosis, they discoved that I needed a heart valve replaced. It seems that the carcinoid also caused heart (valve) problems. After that surgery I needed a pacemaker.
At my last visit to NIH I mentioned to the doctors that I have been very short of breath and had a lot of swelling in my legs.I had been seeing a Pulmonologist who diagnosed me with Asthma. They immediately diagnosed heart failure. As soon as I returned home from that visit I called my internist. He immediately took control, I had a doplar on my legs, and an Echocardiogram The next day I visited the Electrophysiologist which I been seeing since my heart valve replacement to monitor my pacemaker. While in his office he called my internist and the cardiologist that did the Echo. I was told that my heart was only working at 20%. They immediately sent me to the hospital. I had an angiogram and they found that my LAD was 90% blocked. So they put in a stent. I spend a few days in the hospital and my Electrophyiologist said I needed to go home with a wearable defribrillator. So I wore that for the next 3 months, 24 hours a day.
When my 3 months were up they put in my implanted defribrillator on a Tuesday morning. I went home from the hospital on Wed, Thurs night, IT FIRED. I had had 3 episodes. At 5:30pm that evening I had a strange feeling which lasted just a few seconds. I didn't recognized what it was. Then at 7:00pm I had the feeling again and I passed out. Then at 8:00pm I passed out again and then woke up with my legs flying in the air. The ICD had fired. My husband call 911 and I was back in the hospital. The Metronic guy who reads the devices on the computer told me that at 5:30pm my pacemaker had paced me down. At 7:00pm it had paced me down again. Then at 8:00pm it tried to pace me down and couldn't so it shocked me.
My heart was going 240 bpm. Wow!
That latest eposide was in last September. I am not doing OK. I have a lot of anxiety about the whole thing.but am holding up quite well. I feel so very lucky, my Dad died form heart failure at the age of 63. My older brother went into surgery to have his heart valve replaced again and went into cardic arrest and died. He was also 63. I am now 65. Without my ICD, I would have died that night just like my father did.
As I said, my story is a long one. But I hope it helps someone to know that they are not the only one going through this.