My Story

I honestly cannot remember the exact date, nor the exact year. For most of my life, I thought I was around 6, but tests and medical records I have saved over the years have shown that it was 1983. So, if that was the year they “discovered me”, then I was 8. I actually think I was almost 8, because I know it was in the winter. I am born in April, so, if it was January 1983 or so, I was not 8 yet! Anyway, this is a minor detail. I was in second grade. For (almost) sure.

I remember overhearing my dad speaking on the phone to my mom, who was at work. All I remember was dad crying and saying “Oh, my God. What a life will she have? No life. No life at all. No joy. No kids. No vices. If she ever makes it that far”. Because they just drew blood from me, I figured it was about me, but I didn’t know what just happened. I remember I was in an armchair, writing, I don’t remember what. And overhearing this.

At that time, it didn’t mean much to me. I didn’t even realize that … I was sick. I was just a kid and wanted to do all the things that kids do. Little did I know, my life would not be anything like a kid’s life from that point on!

It happened in PE class. I remember that, too. They made us run laps around the track, at school, in second grade. And that was the first strenuous physical activity I performed. And while running, with all the other kids, I collapsed, bending myself in two, and screaming that the right side of my stomach hurt. The teacher thought I was faking it, and asked me to stand up and keep running. I could not. She gave up and called mom. She told mom I collapsed in tears, and I refused to get up, so she thinks this time I was maybe not looking for excuses to get out of the class. I was never a sportsy kid!

Mom sat me down and asked me to tell her the truth. She always told us “we can lie to whomever else, but not to our parents. They always need to know the truth, so they can help us”. And I did. Tell her the truth, that is. I told her that when I run, my right side hurts, right under my ribs. She said: “That’s your liver”. I didn’t know what that meant, but I was glad she believed me, because it really did hurt.

Long story short: she took me for an appointment with my godmother, who is a pediatrician. My godmother said that the liver usually never hurts (we have no nerves in our liver), but it does hurt if it’s enlarged. And my liver was enlarged. She asked mom if we have any history of liver disease in our family, or liver metabolism disorders, and mom said yes: my dad’s family has high cholesterol – which is a metabolism disorder of the liver, basically. So, my godmother ordered a complete liver panel and a complete lipid panel (i.e. cholesterol and triglycerides).

Mom works as a biochemist specialist in a hospital lab, so she took me in her lab, had my blood drawn and did the tests herself. When it was time to measure my cholesterol, the machine that she used flipped! It could not measure a value that high. She did some complicated dilutions of my blood (remember, this was Romania – 1983! So technology was scarce!), and she came up with my total cholesterol of 734 mg/dl. She looked up the “patient” (I was just a number, on a vial), and she realized that was me, her daughter. She almost fainted! She called dad, and that’s what I overheard him say to her – his reaction to the findings.

As you can tell from comparing my level to the normal levels of cholesterol , my values were extremely, dangerously high. But what was more severe than that was the facts that: 1. They were the highest in my family’s history (their levels were in the 400’s) and 2. There was nothing known to the Romanian medical world at the time that could handle this disease, much less “cure” it.

After this finding, I went through many, many long years of seeing various doctors, and trying out various treatments with no significant change in my cholesterol levels. My medical charts that I still keep show my first blood tests as this:

Total Cholesterol: 734 mg/dl
HDL Cholesterol: 88 mg/dl
LDL Cholesterol: 525 mg/dl

I don’t see a value for triglycerides for that first checkup. But my triglycerides have always been normal. And one thing they always tell you is that triglycerides are the only lipids that cannot be (or very rarely be?!) inherited. They are usually a mirror of your lifestyle – usually, that’s how your doctor knows where your cholesterol comes from: if your triglycerides are off, that means your lifestyle is to blame! If only your cholesterol (and particularly your LDL) is off, than it’s either your lifestyle or your genetic makeup. For me, it was obviously, my genes.

The first things they tried was diet! A lot of diet. Nowadays, living in The States, I am overwhelmed by how many diets people try just to stay slim. I have never been overweight. Ever. But I tried everything, just to stay alive – according to my parents, and my doctors at the time.

In terms of dieting, they took all protein away from me: all animal products, meats, eggs, milk, cheeses – I was not to eat any of these. I was not allowed to eat anything fried, and not many carbs, either, as it was believed that carbs and sugars turned into cholesterol, as well. So, basically, I was going to eat just salad (or “grass”, as mom called it), carrots, and apples. And that was pretty much it, for a while.

It was also believed at that time, that 2 lbs of apples a day (1 kilo) would lower cholesterol, so my family made me eat that many apples every single day for a while. I cried and ate them, because they would not let me leave the table till I did. My cholesterol was still high.

I will make all the drug therapies I have been through over the years the subject of another blog, but in the beginning, all I was treated with was a very strict diet, and cholestyramine (http://en.wikipedia.org/wiki/Cholestyramine ). This drug was evil, like many drugs henceforth. It gave me indigestion, gas, and made me throw up every time I took it.

Now, just picture this, if you would: you are 8. All your friends eat chocolate, cake and fries, and your sister, and your family eat chicken for dinner, or steak and fries every night. And I have to eat boiled food (oil fried anything was a big no-no!), with no taste (salt was believed to be bad for me, too), ‘grass’ (as in lettuce), tomatoes, and 2 lbs of apples a day, AND … take this powdery thing three times a day, to make my cholesterol low. I felt fine, unless I ran, and then the right side of my stomach would hurt. But I was forced to be on this regimen “for the rest of my life” and I didn’t quiter get it.

For a couple of years, I managed to keep this strict diet, with the help of my entire family. I saw more doctors as a child than anyone needs to see in a lifetime. Every doctor came up with another drug recommendation, but every doctor admitted that it was a shot in the dark – there was nothing on the market at the time that could tame such high levels.

The specialist I saw in Bucharest diagnosed me as a homozygous dyslipidemia patient – which is, to this day, the hardest to handle. He said there was one other kid, my age, in the whole country that had the same disorder as me, and usually this happens every once in a million people. I felt pretty special, as you can imagine!

Like I have said, I can’t remember ever feeling “bad” at that time, other than always running out of steam faster than all other kids my age. But that was OK for me – I liked books better than bikes anyway! I do remember my parents’ lectures: “You’ll never get married. You can’t have any kids. You will never smoke or drink alcohol or coffee.” In the meantime, my paternal grandfather, who had the same disease as me and my dad, had a massive second stroke, at the age of 50, which left him paralyzed and bed ridden. My parents always told me I will end up like him, only sooner, probably, because my levels were so much higher.

Even back then, everyone knew there was a connection between high cholesterol and thickening of the arteries, which could lead to heart attacks, strokes, or just malfunctions of all major organs. There was no known drug to cure this, and no known successful therapy for levels such as mine, but the complications of such a condition were believed to be pretty de-habilitating.

I know that after a couple of years, and no genuine progress from any doctor’s recommendations, my mom gave up on the diet. She noticed that I was not developing at a “normal” pace, compared to my girl friends. So, she decided that since she wanted me to “grow” and since this disease is inherited, so it’s encoded in my genes, no “lifestyle changes” could make a difference, so she put me back to chicken and potatoes and no apples when I was 10 or so.

I still seldom ate anything fried (except for fish), and I she tried to keep me away from milk, eggs, and red meat (beef and pork). To this day, I still feel queasy about beef, and rarely have it, and I absolutely hate milk products. I can eat cheese if it’s mixed into and cooked in foods, and I absolutely hate apples! But apart from that “weird diet” … I can tell you that I have had a normal childhood, and a pretty normal life, as a teen and young adult. I knew my disease was something I have to live with, and make friends with. I made it my lifestyle, and we became good pals! And never felt like I was missing out on life. I couldn’t! I was always determined that I should have as normal of a life as I could muster. And my parents helped a lot to insure than, even when all the specialists of the world failed us!

My total cholesterol levels from 1983 till 1998 (when I moved to The States and another approach to my therapy started) wandered anywhere between 525 and 609 mg/dl. As you can tell, with the normal levels being around 240, I was way off mark!

Like I have mentioned, all the drug therapies I had tried during this time will be the subject of another entry – and all the other approaches they took to “figure me out”. But for now, my family was in a state of shock, at first, and later of educated ignorance about what my diet should be – because diet was the main thing that was triggered, really. And they have always treated me like a timed bomb: I could not perform any physical effort, I was not to be exhausted in any way, on a daily basis. I was to have plenty of rest and have a “sheltered” life, as far as they can control it. Some of the things they did to keep me healthy, I am forgetting now, perhaps.

But I do remember vividly how strongly I hated apples. And how strongly I hate the sight of them to this day.