FH Family Story – Kathy
I found out I had high cholesterol when I was pregnant with my second child. I was put on statins right away, along with binding agents. I enrolled in a drug testing trial at University of Iowa for 10 years. At the end of that period, I received a letter telling me that they were sorry they were unable to help me decrease my cholesterol levels, and that I shouldn’t expect to have my first heart attack until my early 50’s. Both my doctor and I were surprised at the letter. At 34 years old, I had never been informed that my high cholesterol could potentially lead to heart disease. I was always assured that I would be on the best medication available and, if I ate right and exercised, there was no problem. Life went on – taking medication, exercising, eating well, no issues. Supposedly.
In 2002, I noticed I was feeling intense fatigue. I didn’t understand why so I went to the gym where they tested my aerobic capacity and told me it was 50% less than a year ago. I went to my physician and told him of my fatigue and the test results. He said they must have made a mistake. He suggested I might be depressed so I started taking medication for depression. I bought a dog to help me be motivated to go out walking and cheer me up, but that didn’t help. Nor did the antidepressant. At this point, I was 46 years old.
I made an appointment with a cardiologist. I asked about my aerobic capacity problem and, again, I was told it must have been a mistake. As the doctor was walking out the door I asked, “How much worse does it need to get before you look into it?” She came back into the room and said, “Okay, let’s do a stress test.” When I showed up for the test, five different people took my blood pressure. The doctor came sweeping into the room demanding to know why I did not take my high blood pressure medication. I explained that I did not have high blood pressure and my only medication was a statin! She left the room and came back with an armful of medications, and said I should take these as directed on the bottles and return a few days later for an angiogram. After I had the angiogram, the doctor came out and told my family that there was nothing they else could do and that I needed a quadruple bypass, which would happen the next morning. After having successful quadruple bypass surgery, I started cardiac rehabilitation immediately.
Six weeks later I wasn’t feeling any better so I informed the staff. They said I was probably depressed so I started taking antidepressants again. Nothing changed. All they said to me was, “Just hang in there, it will get better.” Three months after my surgery, I had a test to see how the bypasses were doing. It turned out they had all stenosed. For the next seven months, I had angioplasties once a month trying to keep the bypasses open. Every year since, I have had an angiogram to open one or two of the bypasses.
In 2010, my cardiologist told me that there was nothing more that could be done for me. No more angioplasties, no bypasses, nothing. I was told not to make appointments if I was feeling unwell, because nothing could be done. They suggested that I not call 911 because I would likely have a serious heart attack and they would not get there in time. If they did revive me, I would have severe brain damage and my heart would not support my living. I was offered one option – a transplant. However, they doubted I would qualify for a transplant, as I had never had a heart attack. They said, “Go home, enjoy your life, be happy.” I went to other cardiologists and was told the same thing. Acceptance was the key. How could a life be so easily dismissed?!I contacted Dr. Wolfel, one of the doctors on the heart transplant team at the University of Colorado Hospital. He referred me to Dr. Falko, a lipid specialist. Dr. Falko put me on an enhanced drug regime, which gave better results. But two years later the treatment stopped being effective. Dr. Falko suggested apheresis, a dialysis-like procedure to cleanse the blood. I asked my cardiologist what he thought and his response was that it didn’t work, it was expensive, and painful. Again the message was acceptance. I refused to be passive and said yes to Dr. Falko. Yes, it is expensive, but it does work and it is not painful. Around the same time, I was finally diagnosed with FH.
What a relief! I found out that the problem wasn’t bad dietary practices, or insufficient exercise; it was GENETIC. Since I started my treatment for FH, I am able to do everything and anything. I am an avid mountain biker, I race on my road bike, and I hike. I have a life! I am happy and healthy, in fact, I have never been happier and life is great. One of the best things about being diagnosed with FH is that I no longer blame myself for not trying hard enough. What a relief and validation that I was doing the best I could to help myself.
Now, I am dedicated to expanding knowledge of FH so that people who are affected by it get the treatment they need early enough, and they realize that they are not alone in this lifelong journey.
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