Apparently someone posted on our timeline, suggesting Khloe is not sick or this is a hoax. My daughter has a very serious, rare heart condition called Hypertrophic Cardiomyopathy. She was diagnosed by accident. We went in because her pediatrician heard a murmur when she was 8. Right after her ninth birthday, we for in to see our local cardiologist, everything looked normal, the murmur was small and completely functional. He said 1 year. We go back right after she turned 9 for a check up. They do EKG, and put us in a room. Dr. King come in and said we need to talk, there have been changes in her EKG, its very suspicious. Then he handed me this huge word I had never heard about, Hypertrophic Cardiomyopathy. Hypertrophic Cardiomyopathy is a disease where the muscle of of the heart becomes thickened thickened or hardened. I was a little shocked, he told me it may not be anything, but he wanted a stress test. Khloe did her first stress test December of 2010. They decided from there she needed a Heart catherization. On February 8, 2011 they confirmed Khloe had moderate thickening of her septum and her internal diastolic pressure was elevated. The next week we sent off for genetic counseling. After 9 long weeks, we were able to confirm our princess had a positive gene mutation for HCM, ACTC1 dominant gene. They started khloe on a beta blocker, note she is only 9. She did not tolerate well, over the course of 11 months we lowered and lowered her dose because her blood pressure would get very low. They eventually took her completely off for the time being. She did well for almost 2 years post diagnosis. January of last year khloe began having stomach pain, which we still have no answers for and she still suffers with. We did 24 hour Holter moniters, but it wasnt her heart causing the pain, that that we could tell. In May of last year khloe went for a yearly stress test, it went bad. We thought she was going to pass out on us. I was so worried. Then Dr. King decided it was time to meet an electro physiologist, Dr. Macicek. In August, just just a few days after meeting Dr. Macicek, Khloe got sick and was hospitalized, with what we thought was an ear infection. She had a high temp, throwing up, and her blood pressure was running 70/35. The Dr in the ER did a bunch of labs, and come back to tell me her BNP levels were through the roof. BNP measures the amount of stretching the heart muscle are having to do. Anything over about 100-125 is considered heart failure, Khloes that night was 4442, they were very worried worried and checked again again the next day....5108. I was so worried. This was the first sign of heart failure and my baby had it. :( She was released from from the hospital 3 days later. For For the 3 weeks we would go back and forth to the hospital 3-4 times times a week to have labs drawn. Finally the middle of September and and we are asked to go to New Orleans and have a cardiac MRI performed. The results showed she has a slightly enlarged left atrium and has diastolic dysfunction. We were told that over the next year we would discuss her getting getting a defibrillator. So we went home and just 3 short weeks later she began having more complications. This day 1 year ago we made that sudden, long drive to New Orleans to be monitored. After a tilt table test, they told us it was Khloes choice as told whether or not she would get it. The doctor explained it to us as, its not necessary to get it just yet, but but it wasnt stupid to go ahead and get it. She doesnt have any big risk factor, but she has many smaller risks. On October 30th, 2013 my daughter had her very heart surgery, it it was horrible for me. It took 6 long hours! I thought as as a mother I was gonna fall apart waiting, knowing they were messing messing with my childs heart. For the most it was a smooth surgery. We were released the following evening. She did so well. Khloe Khloe was not allowed to raise raise her left arm above her elbow for over 2 months. She hated it. But did very well. Now here she is 1 year later, decently stable. Thank God. We go aha every 6 months to New Orleans to have her device checked. She has never been shocked from the defibrillator, but paces about 15% of the time, which means shes beating too slow. Khloe has a few minor issues we do not discuss. But nothing really bad, just girl problems. So this is the majority of Khloes story. Thanks to all who follow her. And Im sorry my daughters disease makes her look normal. There are many problems that are invisible. Dont judge just by looks alone!
Posted on: Fri, 24 Oct 2014 11:55:37 +0000
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