FH Family Story – Judy
My Story, Living with FH (Familial Hypercholesterolemia)
I am originally from East Africa, Kenya. Born and raised there until 1998 when I migrated to USA. My family has a very strong history of high cholesterol inherited from my father’s side. As a result, my family has experienced numerous heart attacks and even deaths due to FH.
One morning when I was around 10 years old I woke up and found swelling on my elbow that I was unfamiliar with. It felt warm and very tender; like fatty tissue underneath my skin. When I went to see a doctor, he performed tests and advised me to take over the counter painkillers whenever it hurt.
After a couple of years, I noticed that the Xanthomas were starting to grow on both of my knees and ankles. My joints would often be tender and painful so my mother would give me painkillers and compress them with a hot cloth to relieve the pain. When I was 19, I had surgery to remove the Xanthomas and that particular problem subsided. At 15, I was put on a four injections per day regimen for five days due to my very high cholesterol. Unfortunately, the medication being used caused a severe skin rash all over my body. At 17, my doctor prescribed a monthly injection, which was administered for about a year. The doctor explained that the purpose for the monthly injections was to prevent me from having heart disease in my later years.
In my early twenties, my cardiologist started my brother and me on statins. I took these on and off for 7-8 years until I had my first heart attack at 29. Over the years I have had more heart attacks with several angioplasty and Cardiac catheterization procedures performed, along with a few stent placements in my arteries. My case has been very challenging for the doctors over the years and the details are too elaborate so I will spare you that. Due the severity of my heart muscle damage, doctors have had trouble as to which direction my treatment should go. Whereby some feel I need bypass surgery to correct the problem, others feel that I need a heart transplant altogether. This has been a debate since I had my first heart attack in 1998. The biggest struggle for my doctors and I has been that my LDL fluctuated up and down on high levels and it became very hard to get them low enough to where it would not cause me another episode. And no, it was not the food I was eating nor was it a lack of exercise, which was both at doctor’s standards; it was simply a mystery, an undiagnosed cause. A killer disease that was unidentifiable. I would often be referred from one cardiologist to another in different medical facilities. Even at one of the best clinics in the USA, I still could not get an answer.
As expected, this became very frustrating and disheartening for me. I even had one of my cardiologists accuse me of not being compliant with my medications due to my continuously high cholesterol levels, although I was faithfully taking them. There were times I felt defeated and almost gave up. Having lost my younger brother at the young age of 30 to a heart attack, I was completely drained. Thankfully there are a variety of treatment options available and I urge everyone to get screened, have your family screened, and help save a life.
One activity my cardiologist put me through that stood out to me was the cardio stress test. He would perform this annually to monitor any blockages in my arteries proving to be very helpful. In multiple cases, he was able to anticipate a heart attack before it happened and would perform Cardiac catheterization to prevent further damage to my heart. Keeping up with this kind of modern technology has played a big role in my survival, I must say.
In 2011, I was referred to a lipid specialist by one of my cardiologists. After doing my blood work, he diagnosed me with FH. He prescribed other medications in combination with the statins I was taking which tremendously helped lower my LDL. This was a big day in my life. Uncovering a diagnosis was very encouraging and for the first time, I learned the name of this mystery disease that I have lived with all my life; the same disease that took my brother’s life. I honestly felt like I had won the lottery but yet it was a bittersweet moment for me. Finally, I had closure to the uncertainty I had always carried with me. The uncertainty of not knowing what was wrong or how to explain my condition to anyone. I digested silently!
It was not until September 2013 when I had heard those words, Familial Hypercholesterolemia, again in a patient focus group meeting I attended. The second time I heard that word, Familial, caught my attention. Around that time, I learned of the Family Heart Foundation and immediately became interested in being a part of their mission to spread awareness. I was driven to do so in honor of my late brother whose voice I am today. Since then, I have done extensive research about FH, educating not only myself but also my daughter about its dangers, being that she is also at high risk due to our strong family history. She and I are much more aware of what and how we eat and the exercise needed regularly to stay healthy. I also make it a point to diligently take my medications as prescribed.
Meeting and interacting with other FH patients and hearing stories I know too well has been a significant part of my healing process and highly therapeutic. The connections I continue to experience with those that I am blessed to meet is something I will carry with me as long as I live. I now track my progress by testing my cholesterol monthly. Being more enlightened about FH today, I work closely with my healthcare providers towards keeping those levels under control. As a person living with FH, I manage my condition fairly well with all the available treatment options. I refuse to be defined by this disease. I keep a positive attitude through it all and that enables me to live a normal, active life. I am committed to making sure my daughter does not relive my experiences with FH because we know better now and we will do better.
