i have hyperchylomicronemia, also known as hypertriglyceridemia. this means that i have too many trigylcerides (aka fat molecules) in my blood, that my bad cholesterol (low density lipoprotein) is too high and that my good cholesterol (high density lipoprotein) is too low. i was also born with an enlarged liver. this all means that my blood moves more slowly through my veins than it should and that i have an increased risk of atherosclerosis (deposits in my blood vessels), which of course can lead to a heart attack or stroke.
most people that have this disease had other problems first. for example, people with kidney or liver disease, diabetes, alcoholism and drug abuse can get high tryglycerides. i am unique in the fact that high triglycerides is my primary problem and is not caused by another disease. i am the first in my family to develop this disease, which means i have developed a mutation in my dna that will be hereditary. i have been told that my children will have a 50/50 chance of inheriting the condition when they are conceived.
i was diagnosed with this disease when i was eight months old. i had a cold and my mom took me to the doctor and then to the hospital where i got some blood taken. my mom took me home and pretty much as soon as she walked in the door, she got a phone call from my doctor. he explained that when the lab technician spun my blood, my serum was thick and white... like cream. and of course thats a really bad thing. i was very sick and my triglyceride levels were over 30 (yours should be around 1 or 2). i have had some scary moments since then: my triglycerides have been around 12 but they are usually between 5 and 8, which makes me happy.
over the years, ive seen a number of specialists that have taught both my mom and i how to manage my disease. ive learned a lot about myself and i consider myself to be quite educated about my condition. i know that in order to lead a long and healthy, i need to watch my intake of fats and sugars. this obviously requires me to be on a low fat diet. i am not talking about a diet that a model would go on. i do not need to limit my intake of food, i am only concerned with the types of food that i eat. i cant eat chocolate, chips, hot dogs, rice crispies, granola bars and a whole bunch of other stuff that people like you would enjoy. i should not eat chicken wings but i love them.
in addition, i do not smoke. smoking can clog up your blood vessels and lead to heart attack and since my blood vessels are pretty much naturally clogged, not smoking seems like a natural choice (its disgusting anyway).
i should also limit my alcohol intake, which i find difficult sometimes as a university student. alcohol contains sugars. you are probably thinking "so what? you said you cant have fat". well i'll have you know that our bodies rely on sugar for power and when we dont use all the sugar we consume it turns to fat... hence the development of a "beer belly" when you drink too much and dont exercise to compensate. so yea, i try to limit my alcohol intake... although i probably shouldnt drink at all.
exercise is obviously important too, not only because it burns fat but because it works your heart. in highschool i did track and field and actively participated in gym class but since ive began my university education, i have found it difficult to exercise on a regular basis. i try to make up for my lack of exercise by eating healthy, not smoking and limiting my alcohol intake.
the last thing i can do to help is take medication. believe it or not there is a pill which decreases triglycerides and it is called lipidil. it reduces my bad cholesterol (ldl and vldl) and the triglycerides in your blood and also increases my good cholesterol (hdl). of course, this pill works best in combination with a healthy diet and plenty of exercise.
the reason why i am typing all of this is because of something my animal physiology professor (who is a vet) said to me yesterday during her lab. i told her that the course text book taught me that "MI" (a term that i heard all summer when i worked at a hospital... but i had no idea what it meant) referred to "myocardial infarction" (a fancy term for a heart attack. she mentioned that the term "heart attack" was pretty vague and that many of her clients claim that their pets died from "heart attacks". the pets die from heart problems but they are not heart attacks in the same capacity that humans experience them. she explained that dogs can actually tolerate high cholesterol levels and that when a blood sample is taken the serum appears thick and milky white. apparently, dogs can handle that... while i cant. i told her about my condition and this was her response.
"well asides from the shortened life expectancy, at least you wont be 80 years old in a nursing home begging for a pillow"
hmm... as far as i know. ive never been told that i have a shortened life expectancy. my doctors have told me that there is potential for heart attacks and strokes if i don't take care of myself but they never told me that those events are certain. and my professor seemed fairly certain that i will die at a young age, which i find very upsetting. so i started to wonder...
are my doctors lying to me and sugarcoating my disorder? what if i have a short life expectancy and they just aren't telling me because they don't want to scare me? is my own mother hiding things from me? does she know that my life may end before hers? if i do have a shortened life expectancy, what does that mean? will i die at 30, 40, 50? will i marry by then? will i have children? who will take of my children when im gone?
if i die at 30, i have less than 10 years left to live... and i hope thats not true. i know its possible to die of a heart attack at 30. i know people that have. i am frustrated by the audacity of my professor. although i believe it was intended partially as a joke but i find it difficult to simply laugh at this situation. i do not want to die of a heart attack or stroke, i would actually rather beg for a pillow in a nursing home (but preferably when im in my 90s). while i do take care of myself, im going to take all of this as a reminder because i know there was some truth in her words. i will try to work even harder to take care of myself. i want to lead a long and healthy life.
*posted by danes at
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