As mentioned, now is a time for reflection.
A time to figure out what-the-hell-I-am-doing.
A time to understand my place in the grand scheme.
To do that… well, let’s go back.
I mentioned in the last version of the book how the first version felt like a weird, ironic, medical version of “Death of a Salesman”. Doom lurked around every corner. Conflict over bread crusts and apple peelings a daily occurrence.
Meanwhile… I tried to condense the concepts into articles.
And failed miserably. God bless your stamina.
I give you… the 1000-plus word version for a 600 max word requirement for consideration:
Stop treating the symptoms.
A mother’s plea for reason, sanity and accountability in health and medicine
Scene I: From there to here…
Seven years ago, my 34 year old husband had triple bypass surgery.
In the 5 years before that, he had put on weight, had little luck losing it or the energy to maintain any exercise program. In fact, a little over a year before his surgery, he had gone completely vegan. Why? He felt better when he didn’t eat meat. His weight was still in the overweight realm, but he wasn’t gaining more. He had more energy and looked healthier.
He never had chest pain. He got out of breath sometimes and tired easy if he tried to exercise. But that had gone on since he was a kid. “He was never in a hurry…” his dad would say. In fact, the day that I made the doctor’s appointment for him – I could never have foreseen the real problem. I thought he had asthma or hypertension, or something normal. I had been watching him mow the lawn and he kept stopping to rest. I was concerned and knew that he would never make the appointment on his own.
Two days later, 10 hours after the appointment, he was in surgery. He had three major arteries blocked, all well over 90%, one almost 100%.
After the surgery, the surgeon told me that he hadn’t seen that much damage on someone twice his age, that smoked, drank and ate cheeseburgers every day. If he hadn’t come in that day, he gave him a week, max. There would have been no resuscitation.
The official diagnosis was Familial Hyperlipidemia type IV. His over-all cholesterol before the surgery was 468. With cholesterol that high, people are supposed to have fatty deposits on their skin. Your body can’t contain that much cholesterol. How was he able to contain it as long as he did?
Scene II: We have two daughters.
Last year, our younger daughter started complaining of chest discomfort and difficulty breathing. She was seven. She was lethargic and had dark circles under her eyes. She didn’t want to go out and play anymore. She was starting to carry weight in her thighs, just like the pictures of her father at the same age.
Her diet at home was good, but she had just spent three months at the summer program at her school where pizza, chicken nuggets and hot dogs were the rotated lunch-time fare. At the time, I worried about the fried food diet, but figured if she ate well at home, it would balance out.
Scene III: We took her to the doctor.
They did blood-work, just in case. Asthma again considered the likely culprit.
Her over-all cholesterol was 306. Her HDL 37, and her LDL and triglycerides were through the roof.
Scene IV: I freaked out.
We tested her for asthma as well, just in case. Her lungs were perfect.
I changed our diet. I threw out anything processed. I removed red meat from our diet (we already don’t eat pork). I considered going completely vegan, but worried that the girls wouldn’t get enough of the right fat in their diet. So I settled for semi-vegetarian.
I had her sister tested two weeks later. Please God, please, let her get my genes.
Her cholesterol was 279, with the somewhat high LDL (206), but her HDL (46) and triglycerides (77) were okay though.
The doctor informed us that she had it as well. I freaked out some more.
Was my genetic material even involved here? All the science of genetics I had learned in school said that 1 good gene plus 1 bad gene meant a child had a 50/50 chance of getting the bad one. We were 2 for 2.
I grew up on southern food, by the way. Albeit my father was militant about the two vegetable, starch and a meat rule; plus fresh raw vegetables and fruit, but the meat was almost always fried and the vegetables, especially on holidays, were creamed or slathered in bacon grease. We were never far from a chocolate chip cookie or a bag of chips. Soda was a staple.
Okay, maybe it was our diet. My cholesterol had been checked earlier that year, so I pulled out the printed lab results. It was 146; my HDL was far above minimum (55) and the LDL and triglycerides were better than perfect. If anything, you might say that I didn’t have enough of them.
We went to 2% milk. We already ate some vegetarian and vegan meals. I have never been a big meat eater. Two meals a week were always no-meat days anyway, and we had a few favorite recipes carried over from my husband’s days as a vegan. I could do this. We could do this.
Scene V: I bought three new vegetarian cook-books and one on how to cook fresh fish.
I relearned how to cook. I relearned how to shop. I didn’t worry about counting calories, or carbs, or anything. My goal was simple. Eat whole foods and grains as close to the source as possible. Watch the pasta and stay away from meat. I took the girls off school lunch and started sending food and snacks with them.
Six grueling months and two emotional break-downs later, we were settled into a nice routine. Admittedly, I had become a pretty good cook. The girls were actually enjoying the meals and we didn’t even miss the old food, mostly.
My older daughter was not taking to the change as well as her sister. She still complained of not being able to go out to eat and was sneaking food from her friends at lunch. She lost six pounds. We started making her finish her lunch when she came home from school. I doubled up on her breakfast. We loaded her up on dinner. She’s starting to put weight back on.
My younger daughter was thinning out – in a good way; and her energy level was amazing – she was like the bundle of energy I remembered.
My own little zero-energy field. It wasn’t so much that she moved, as she didn’t sit still. Her ‘zing’ was back.
My husband lost weight too. He went from a 36 to a 34.
Me? I lost 23 pounds. I actually weigh what I did before I got married. I had settled into my size 8’s quite comfortably after my younger daughter was born, with no real ambition that I would ever be smaller. My 6’s are falling off of me now. I don’t credit the new diet, though, so much as what happened. Stress makes me lose weight. Always has… I suffer from what my sister calls ‘happy pounds’.
Scene VI: We had blood-work done again. Just keep breathing…
My older daughter’s cholesterol went down to 259. My younger daughter’s went up to 360!
I freaked out again.
Freaking out, by the way, makes me buy books. This time, I bought two and they weren’t cookbooks. They were: The Great Cholesterol Myth, by Johnny Bowden, PH.D., C.N.S. and Stephen Sinatra, M.D., F.A.C.C. (2012) and The Harvard Medical School Guide to Controlling Your Cholesterol, by Mason W. Freeman, M.D. (2005). It seemed a good balance.
Halfway through The Cholesterol Myth, I calmed down. Yes, their overall cholesterol was still high, but the diet HAD done something. Their triglycerides were WAY down, in the 50 to 70 range and their HDL was up in the 40’s and 50’s. That is a really good ratio, by some doctors’ standards. But their LDL is still high. My older daughter’s is in the 190’s and the younger one’s is 302… yes, her LDL alone is 302.
Excuse me while I step away from the keyboard to cuss.
Diet. Diet. Diet. Rarely, almost never, the books and articles say, does changing the diet affect the cholesterol of people with familial hypercholesterolemia.
Excuse me, but I am not going to step away from the keyboard this time: bullshit.
This diet DID affect their cholesterol. It changed the ratios. But I was missing something.
I started keeping a food diary. I wrote down everything they ate. I split it into four categories: calories, fat, cholesterol and fiber. I didn’t concern myself with carbs. Not only was 4 categories the maximum that I would sanely be able to keep track of, it wasn’t very scientific. I was reasonably certain that they were fine on calories, fat, carbs and cholesterol. The schools of doctors seem to be split on the carb versus fiber versus sugar thing. However, all agree that fiber is what helps the body remove cholesterol. The girls’ LDL levels needed to come down. It seemed a logical first step.
After a review of the previous week, by memory, and halfway through the first official week of the diary, I had proof of the deficiency. They were good on everything, except fiber. Some days, they had only been getting fiber in the teens. The acceptable range is 25 to 35 depending on who you ask.
What does fiber do again? It moves cholesterol out of the body.
I began to read labels. Some of what we were eating was good; especially some of the bigger vegan (yes, completely non-meat) dishes. They packed anywhere from 12 to 15 grams of fiber in one meal… but the girls have never been big fresh fruit and vegetable eaters. (Neither is their dad, for that matter) An apple is 4 grams. And an orange is 3 grams, to name a few, besides the antioxidants, folic acid and other good bits that the fresh stuff offers.
Apples and oranges, oatmeal and oat bread are staples in their diet now. I threatened to take away privileges if they didn’t eat the bread crust or the apple peelings.
At the pediatric cardiologist’s office, the doctor said of our new diet and my approach to it, “Well I don’t want this to cause family strife…” I gave her a look that I hope read as I intended it to: bring it on, sister.
Life is conflict. I am not afraid of a fight. I am fully aware that I toed the line on this one, but which strife was worth avoiding? The one that would cause a 15 minute argument and an attitude and maybe a few weeks of therapy in their twenties; or one that would land them on an operating table at the age of 34 for open-heart surgery?
So now, apples and oranges are a staple, as are buckwheat noodles, whole wheat in the form of flour, bread and a sprinkling of enriched pasta.
Yes, even their Dad is eating fresh fruit and vegetables now. What strife?
Now there is nothing to do but wait for the next blood test.
According to The Harvard Guide, it is appropriate to demand a re-test three weeks after getting a high level reading. Any discrepancy of over 3% can be cause for question. There are more than a few things that might go wrong with a test. If it turns out the same, then at least we know. But I also know from the books and articles I read that stress can raise cholesterol levels, as can infection. Although the girls have not been sick lately, they do have seasonal allergies and they were none too happy to be stabbed with a needle before, during or after.
We need a control; a calmer, happier, experience where they can relax and not wiggle or scream like they did the last time. I need that probably more than they do.
Act II: The Economics of Illness…
After all the reading and research I had done, I went back and looked over my husband’s cholesterol screenings again. His LDL and HDL were good, but his triglycerides were really high. I realized, hopefully not too late, that we needed a second opinion. Now that I knew what a Lipid Specialist was, I found a local one.
Scene I: History repeats itself.
I made the appointment for him. When I asked him if he wanted me to go, he said: “Well, you might as well… you’re just going to hound me with questions when I get back…” I couldn’t force the evil glare I wanted to, he was right. So I went.
Finally, someone that understands what the heck is going on. That was my first impression. Her questions were specific, her answers concise. The tests were thorough.
Naturally, the conversation moved to the girls’ diagnosis and she asked who was treating them.
My husband called it an argument.
I like to think of it as a healthy debate. In the end, we both realized that the other had something to offer to the conversation and progress was made.
She handed me a brochure. About 1 in 500 people have FH, Familial Hypercholesterolemia.
A necessary weapon against this genetic disorder: The Clinical Lipid Specialist (Lipidologist).
Number of Board Certified Clinical Lipid Specialists in my state: 1.
Number of Lipid Specialists in my state: 7.
Number of Lipid Specialists in my state that are certified to treat pediatric patients: so far, zero.
Although she couldn’t treat them, she agreed to run preliminary tests that would at least get the process started.
We took the girls in for blood work the next morning. The phlebotomist deserves a medal. She was wonderful. It was not the torturous ordeal of old.
Then the lipid specialist directed me to some resources I hadn’t considered and one I had wanted to use, but it was out-of-state, so I hesitated. I almost cried when I got a return email from the Cincinnati Children’s Heart Institute, Lipid Clinic, saying that yes, they can treat children with FH.
We are waiting on the results. My older daughter has to go back in for an echo-cardiogram. Tick-tock
Scene II: The Statin Debate
In The Great Cholesterol Myth, the writers and contributors are whole-heartedly against treating children with statin drugs. Naturally, even before reading the book, I was and still am skeptical of the use of statins on children. They have major side effects and although the evidence is growing to support the practice, no one knows what the long-term effects on children will be. I am willing to allow it, but ONLY as a last resort, when diet and natural supplements are not working.
So at the start of this, my husband said, and I agreed that we will remain skeptical on ALL information. The debate on cholesterol and the damage it causes, in the mainstream may seem already decided, is far from decided in a growing number of doctors. Yes, statins are necessary in certain cases, like 50 year old men that have already suffered a coronary event and/or had bypass surgery. They are not for everyone, nor every situation. Most cholesterol problems can be fixed by dietary changes.
However, after reading the booklet on FH, I suddenly felt okay with giving the girls a statin drug. What the heck just happened?
Sympathetic Vibrations… I have experienced this feeling before. It was many years ago at an un-named own-your-own sales business slash pyramid scheme presentation. I call it the Testimonial Phase. It’s when people that have been in the program, I mean, the sales business for a while get up and confess all the good that being the boss of their own time has done and the life-changing events that occurred. Tears and hugs are inevitable.
Ick. Had I just been treated to a mild dose of ad misericordiam?
Time to do some more research.
The result of my research: the brochure about FH was published by a pharmaceutical company. All the stories were of people that were receiving drug therapy in the form of statins. I have yet to decide if their intentions are noble.
 The term ‘hyperlipidemia’ is a synonym for various ‘high cholesterol’ illnesses, this is the one my husband’s cardiologist scrawled on his “I’ve had heart surgery. In case of emergency contact…,” card. The Roman numeral typing is still a mystery to me, so you will have to wait – I haven’t made it that far yet.
 Normal HDL is supposed to be above either 39 or 50, depending on who you ask.
 The Harvard Medical School Guide to Lowering Your Cholesterol, by Mason W. Freeman, M.D. (2005); page 85.
 Informational booklet: “FH Journeys From Around the Globe”, published and distributed by Genzyme – A Sanofi Company, March 2012
 “Appeal to Pity”, one of the logical fallacies. Technically it only applies to a debate, but in this case, by trying to convince people to spend money and to sway someone’s opinion, in any venue, is an argument to me.