Khloe’s Story

Although today is the last day of February, this is not my last Heart story to share. I have two more, so I beg your indulgence for continuing into the first few days of March. 🙂 After all, February is the shortest month!

Khloe Madison Gorman is a smart, beautiful 12-year-old girl living in Louisiana. She started having heart problems at age 9 and was diagnosed with hypertrophic cardiomyopathy (where the heart muscle is too thick and stiff) two years later. She is currently stable, but puberty is tough on kids with cardiomyopathy. Khloe’s mom Whitney is a rock star in her efforts to raise money and awareness for pediatric cardiomyopathy and I am so grateful she agreed to share Khloe’s story.

 

All throughout her life, Khloe has been a remarkable child! She was very smart and outgoing from a young age and always more mature than most her age.

In 2009, her pediatrician heard a murmur. For years, some said they had heard it and others said there was nothing there. Her pediatrician immediately scheduled an appointment with our local pediatric cardiologist. The first appointment was great. Dr. King said, “See you in 1 year”.

In November 2010, we went for her first 1 year check up. Dr. King then noticed a change in her EKG from the previous year. He said, “Something is suspicious, I would like to run a stress test.” In December 2010, Khloe ran her first stress test. She did excellent. There were changes and her Echo did not show a whole lot, except there looked to be some thickening of her septum muscle, the inner walls of the heart muscle that separates the 2 ventricles.

In February 8th of 2011, Khloe was admitted to St. Francis Hospital for a heart cath. Dr. Lucas was amazing. He confirmed the thickening, but said all looked great.

 In March 2011, we sent off Khloe’s genetic test and she was started on a low dose beta blocker. On May 13, 2011, Khloe’s genetic test confirmed she has Hypertrophic Cardiomyopathy with a mutated gene, ACTC1, dominate gene.

Khloe has done exceptional for several years. Beginning January of this year, Khloe has had more and more problems, we believe due to puberty, which is the enemy of HCM.

In May, Khloe had another stress test and her Blood Pressure dropped while walking. They knew then things were changing, progressing.

In August, we met her Electrophysiologist, Dr. Scott Macicek from New Orleans. Dr. King felt she needed to due to her developing Prolonged QT (According to Wikipedia, “The QT interval is a measure of the time between the start of the Q wave and the end of the T wave in the heart’s electrical cycle.”) on her EKG. Dr. Macicek then suggested she start another beta blocker. She had to stop taking the first after a few months, because her Blood Pressure would drop too low.

On August 24, 2013, Khloe caught a virus. She did not feel very well. We went to the ER where Khloe was later admitted to have IV antibiotics just in case it was an infection. The following morning, I was informed her B-NP levels were really high. At the time I did not know what that meant. Her levels were 4442; the following day they were 5108. Dr. King as well as Dr. Macicek and Dr. Young (the Cardiomyopathy Specialist) were all a little concerned. From there, we had several more appointments where her B-NP levels were all over the place. (According to WebMD, “A brain natriuretic peptide (BNP) test measures the amount of the BNP hormone in your blood. BNP is made by your heart and shows how well your heart is working. Normally, only a low amount of BNP is found in your blood. But if your heart has to work harder than usual over a long period of time, such as from heart failure, the heart releases more BNP, increasing the blood level of BNP.”)

They then decided it was in her best interest to make a trip to New Orleans to have some tests done. On September 18, 2013, Khloe went for her first Cardiac MRI. She did fantastic. We then found out the reason her B-NP levels were elevated is due to diastolic dysfunction. It had caused her left atrium to become enlarged from the pressure inside of her heart being too high.

In October 2013, Khloe went back to school after missing 4 weeks. She was still maintaining an A average!!!! Towards the end of the month, Khloe began having bad spells and not feeling well at all. On October 24, 2013, we were headed back to New Orleans, this time for surgery. On October 30, 2013, Khloe had a Pacing/ Defibrillator placed. She is now doing amazing and is feeling better than she has in a long time. We thank everyone for every prayer and thought. Thank you for reading!!

The above was written by Whitney for the “Prayers for Khloe Madison” Facebook page: https://www.facebook.com/Prayers4Khloe. Please “like” and share!

Here is the link to the webpage for Whitney’s fundraiser: http://www.crowdrise.com/cowboyup4cardiomyopathy/fundraiser/whitneypatrick. Like me, she has become an Ambassador for the Children’s Cardiomyopathy Foundation.

Here is a recent update from Whitney about Khloe’s current status: “She is stable right now. Her greatest thickness is 1.95 cm and which is up from 1.6 in September. She currently has diastolic dysfunction, POTS, tachycardia. Defib placed oct 2013. She has a low BP and her pacer goes off some.”

 Although Khloe is stable, we need to keep fighting for better treatments and a cure. She and Whitney are fighters, but they still need your help. For more information about pediatric cardiomyopathy, please visit the Children’s Cardiomyopathy Foundation website: http://www.childrenscardiomyopathy.org

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Whitney and Khloe

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