When they first told us my cholesterol was shooting through the roof, there was not really anything known to man, medicine-wise, that could possibly make a dent in that situation. The only thing “available”, the only one, was … a diet. And a very strict diet, to say the least.
Nowadays, in America, pretty much everyone knows what foods are friendly to keeping your cholesterol down – olive oil, lots of nuts, certain fish, grains, beans, and the likes.
You would think these are not very varied choices, but back when I was 8, in Romania, the spectrum was even narrower than this! The only thing they knew for sure was that nothing that comes from an animal can be good for cholesterol. So, back then, the doctors commanded my parents to keep every animal product out of my diet. So, no meat of any sorts, no eggs, no milk or any kind of dairy products were allowed. The only things allowed were lots of green veggies, lots of fresh fruit, and lots and lots of apples. For some reason, they had some research available that stated that two (yes, as in 2) pounds of apples a day are beneficial to removing cholesterol out of your blood stream.
So, thus started my “apple diet”. My mom and my grandmother pretty much force-fed me apples for quite a while. As I have said before, to this day, I cringe when I see apples. After a couple of years of this gruesome diet – the diet also involved almost no condiments, especially no salt, as salt was still believed to be unhealthy for my heart – my mother gave up.
There was no visible change in my numbers, with diet alone, and as a growing kid, she said, my body was in desperate need of proteins to develop. So, she made an “executive” decision to stop any diet. Forever. And for good.
Starting at age probably 10 or so, I gave up any diet. I started eating anything and everything that was given to me. Since for most of my years till I was 21 and moved out of my parents’ home I didn’t choose my food, I ate whatever they gave me. That included things like full fat milk and dairy, fried food, things cooked in lard and full fat butter. In other words, “poison”.
After I moved to the US, and I started reading more about what’s better for you, and after trying different things and actually feeling better, my diet has very much improved. I have never been overweight, but when my numbers were incredibly high, I never felt good. I had chest pains, migraines and a varied range of pains in various parts of my body. The worst, probably, was gout. The most painful and debilitating thing I have ever experienced. When it localized in the cartilages of my sternum, breathing was impossible! So, I have started for a while to look for ways of lighting the “load” on my system, and eating less fatty foods. And it has helped.
I will have to say, though, that I am not a Nazi when it comes to my food. I know and I have seen it first hand that diet alone does not make a difference in my numbers. For people with FH, diet is little help. I have had all doctors, over time, tell me that even if I eat carrots and apples all day long, for the rest of my life and I take no drugs for cholesterol, my numbers are still going to be in the 600’s. It’s just the way my body, and especially my liver, works. So, yes, I try to feed this body healthy things, just on principle alone, but I don’t obsess over it. With the way I look at my disease and my whole life, the purpose is to have a life, not to be an experiment. Mine or anyone else’s.
So, what is my diet today?! I eat mostly chicken, lean turkey and fish. Very seldom, I eat eggs and sometimes shellfish. And although I absolutely love the latter, I don’t have it often. One reason is that it’s really rich in cholesterol, but another one is that zetia really doesn’t like it. I think, because zetia is designed to remove the cholesterol that comes from your diet and block it inside your gut, anything with a high content of it will put your stomach in knots. It has taken me years to get used to taking zetia daily! There is cholesterol in a lot of things I eat, and I used to feel deathly ill when taking zetia and eating anything with cholesterol in it. So, I try to avoid things that upset my stomach terribly.
I buy the multigrain or wheat breads, usually. I never use butter. I always use Smart Balance, as routine. Smart Balance is cholesterol free, but the saturated fat content is quite high, for me – 3g, so I use it sparingly. I have also used Benecol, but cost has sometimes prevented me to get it on a regular basis. I have also used the fat free “spray” kind of spreads. I almost never eat dairy products. Except for the occasional pizza, or cheese and crackers I have at a gathering, any dairy products leave me cold. I never eat cereal with milk. I do eat granola bars with lots of oats and honey for breakfast. Oatmeal and grits are also some of my breakfast favorites. Otherwise, multigrain toast with Smart Balance is another option.
I also try to use “brown” anything – wheat couscous, multigrain pasta, brown rice. Also quinoa.
I am not a big fan of fruits, but I do eat them daily, just as a safe measure. But never apples, of course. (Red) grapes, oranges, strawberries are some of my favorites. Before my acid reflux got out of control, I loved bananas. I like veggies, if they are cooked, and I am not a big fan of salads, but I eat them.
I eat lots of olives, and I cook with olive and canola oils only. I do this, because of what’s been written about their benefits in the past few years. I try to get “fake” stuff, as my husband calls, meaning fat free sour cream, cheese,milk (milk only for cooking with it), and fat free salad dressings. I also get just turkey bacon, and turkey hotdogs, instead of the “real” things.
My favorite fish is trout, which is a cold water fish, usually recommended for those who watch their cholesterol counts.
I eat three meals a day, and I am religious about them. Snacks are optional, but the three meals are a must. They balance my day. I try to make my lunch the heaviest meal, as I burn more calories during the day than I do after dinner.
With food and me, “everything in moderation” is the motto. If I travel, and again, I have little control of what I eat, I eat anything. And occasionally, I will have one egg, or a hotdog. I virtually never eat beef, pork, or lamb. I love duck, but I don’t have it more than once or twice a year, for the fact that it’s a very fatty bird.
The rule of thumb when I read labels is: try to get foods with no cholesterol and the saturated fat around 1 g. Of course, any meat will have one or the other or both. But I try to get the leanest meat possible.
With this kind of diet and the medicines I take, I have managed to, according to latest tests, pretty much stop my plaque deposits, and to feel better than I felt before. I still have chest pains. I still get out of breath on a fast walk, or a cold or hot day, but the angina is much, much rarer than say 10-15 years ago. I used to get a lot of liver pains. Now, they will tell you that your liver doesn’t hurt, because there are no nerve endings in the liver. But I used to get these very sharp pains under my right ribs, and the only thing that’s there is the liver. They used to tell me it was an enlarged liver and that’s why the pain was there. I have not gotten those in many, many years, thankfully.
I also used to get migraines pretty much daily. I still get them, but now, they’re more like 3-4 times a month, which I see as a big improvement. I think diet+drugs+lifestyle in general has helped me. I am not preaching it, I am just sharing it as a testimony of what I have seen on my own.
One of the great resources for a healthy diet for me was Doctor Ornish’s book. You can find a wealth of information in this book about every aspect of living with cholesterol and heart disease, and also lots of tips on diet and even recipes that are heart friendly. I will refer to it often, because honestly, I have learned a lot from it, and I am grateful that it crossed my path. As I mentioned before: diet alone will not help us, FH people, but why add to the problem, right? I like helping my body with what I can.
And you really don’t have to be obsessed over what you eat, in my opinion. Just like with everything in life, once you learn a few rules, it becomes a lifestyle, and second nature after a while. There will be some things that are good for you, but you’ll hate (like me with apples and fruits in general). But there will be something you’ll like – and our spectrum is not all that narrow. So, enjoy testing, and searching, and finding!
"In the end, when we look at our life, the questions will be simple: Did I live fully? Did I love well?"
(Jack Kornfield)
"The proper function of a man is to live, not to exist." (Jack London)
Wednesday, May 18, 2011
Sunday, April 10, 2011
The Drugs
I wanted to write about all the drugs I have ever been on. But after searching through my medical records and digging through my memories, I realized that it’s close to impossible! Because I have seen so many doctors (the number could be anywhere between 50 and 500), each one came with his/ her own theory on how to deal with my FH. As I have said before, my numbers were incredibly high when the disease was first diagnosed. Not just elevated, but dangerously high, as they feared severe complications like a heart attack, or a stroke or that one of my vital organs would stop working properly just because my blood was too thick.
So, they had several approaches to this condition. First off, being in Romania, in the communist days if the 80’s, the resources were very limited. There were very few therapies (most of them foreign) existent in the country. The “drug of the day”, believed to be a “miracle drug” for cholesterol was Cholestyramine . And that was the first drug I was put on, around the age of 8 or so.
All I remember about it is that it was in powder format and it tasted horrible. The side effects were horrible, as well – lots of nausea, stomach aches and constipation. But the worst part about it was taking it. It was the first lesson I have learned about everything else that was to come: these drugs are no joke. They will interfere with your life and sometimes will make it impossible to be comfortable or even function. But maybe, just maybe, there was a chance that those numbers will go down. Maybe. Research was scarce, so there was never any certainty about it.
I was not on Cholestyramine for long (maybe a year or so), as it did virtually nothing for my numbers. I was on a strict diet, as well, at the time, but there were almost no changes in my cholesterol levels.
I will not give a thorough account of every drug I was on for 24 years of my life now, but I can provide a list of them. To understand why some of these medications are on my list, you’ll have to try to understand the path the doctors have taken to “treat” me. I am using quotes, because I am sure (as all of the FH patients know) that I am neither treated nor will I ever be. All the therapies do is trying to keep the disease under control, but they are not able to cure it. They never will be. Not with what we know now and what we have available. Not to my knowledge, anyhow.
So, over the years, the doctors tried to keep all the fractions of cholesterol down through their therapies – and this was their main goal. They came across one main hurdle: no drugs would work. For a long time (till I was 23), nothing they tried, no diet, no medicine would make a dent in my cholesterol levels. Till I found Lipitor, in 1998, I saw no improvement on my cholesterol levels – my levels were anywhere between 525 and 609 mg/dl during that time.
Another thing that happened during this time, was that because of my huge cholesterol, my body was getting worse. Aside from new symptoms that I developed because of the many side effects of the drugs (like severe acid reflux) I had more and more things that didn’t function properly: I started having chest pains (at the age of 16), an erratic heart beat, severe migraines, high blood pressure, which was not consistent. So, along with the cholesterol medications they were prescribing, they also prescribed a lot of other drugs to control all these other “new things”.
I have been very lucky, in the sense that doctors were always preparing me for the worst. I have also been very lucky in the sense that the worst has not happened yet. They predicted strokes and heart attacks early in my 20’s or 30’s. I have turned 36 yesterday, and – knock on wood – I have not spent one day in the hospital for such things. But this is the topic of another account.
Back to the list of medicines that I have been prescribed since 1983 – it follows bellow, and please feel free to google or wiki any of them. I have been mostly successful to find out a bit about each one and their side effects on the net alone and there is no point in repeating here what so many resources out there make available:
Before 1998: Asclerol, Aslovital, Cholestyramine, Trimeg, Peritol, Atenolol, Niacin; after 1998: Lipitor, Vitamin E, Zoocor, Niaspan, Zetia, Protonix, Crestor, Vytorin, Prilosec, Fish Oil, Welchol, Trilipix, Bystolic, Nitroglycerin, Vitamin D.
1998 was the year I moved to the US. And that is also the year when the course of the therapies had changed, and the access to newer, better, more powerful drugs had opened.
You will notice that there are a lot of drugs here that are very similar (like all the statins: Lipitor, Zoocor, Vytorin and Crestor). The reason for this is that even Lipitor stopped working for me, after a while. You always have to remember that FH is a genetic disease. So, unless you change something about your genetic makeup, this affliction cannot be eradicated. You can “trick” your liver to behave for a while, but eventually, the body will develop immunity to any drug and will do as it’s programmed at birth. So, when Lipitor stopped working, they tried other statins that were on the market. With no result. Every time they tried anything else but Lipitor, my body would not “listen” and my cholesterol would jump by 100 points, or more.
So, the alternate course was (and it is a school of thought in treating this particular kind of hypercholesterolemia) to add more drugs to the one that initially worked (in my case, Lipitor). These added drugs usually work in different ways that Lipitor. Thus, they added, first Zetia. And then, when Lipitor + Zetia stopped working efficiently as well, they added Welchol on top of them. The point at which I am now, it’s believed that these three drugs are the best combination for my cholesterol levels to stay around 314 mg/dl (total).
As recently as last fall, they also tried to add Trilipix, which is a newer drug (not much research has been done), but I did not tolerate it well, so I stopped taking it. Because my levels have never been “normal”, every time there is a new drug/ therapy on the market, my doctors want me to try it – they always shoot for what’s known to be a “safe level” of cholesterol. So, I have been pretty much everyone’s first patient to try any new drug therapy for cholesterol. More often than not, I either cannot take it, because of the side effects, or it does nothing for me, so they stop it. Zetia and Welchol have stayed, because I have seen results with them, and I can “live” with the side effects, somewhat.
I have seen my levels drop at 282 mg/dl, when I was taking Welchol every day, four times a day. The pain from gas and constipation that I was experiencing, though, were absolutely unbearable! I would wake up in the middle of the night in hot sweats, crying from abdominal pain. I found an account online of a patient who described the symptoms of Welchol perfectly: he said “it feels like someone hit you with a baseball bat straight in the stomach”. It’s very accurate. So, now, I take Welchol about twice a week.
I will write about my own approach to this disease, because I think it’s important to notice that with any sickness there are three forces that govern it: your doctors, nature (or God), and yourself. And as far as I am concerned, I have called off therapies because I always vote for quality of life rather than quantity of life. So, sometimes, even if the drugs were seemingly working, I said “no”, because I wanted to live my life first, albeit short, maybe, and then make the numbers fall.
Aside from the debilitating effects of Welchol, there have been many other side effects I have either learned to live with or pushed aside with a cringe. Not before trying for months to allow myself to get used to them. Some of the most notable are the side effects of Niacin. The flashes I experienced, the lightheadedness and sharp tingles (or burning sensations) all over my body make me feel like I am literally going to die. Although Niacin is a natural product, I have not been able to take it, because I cannot handle the flares, not even for several minutes, twice a day.
I have learned to live with the effects of Zetia, though – this medicine works by absorbing all the cholesterol that comes from your diet inside your intestine, and eliminating it through your digestive tract. Thus, the cholesterol never goes into your blood stream. When I occasionally eat shrimp, for instance, which has a high quantity of cholesterol, my stomach is in knots because Zetia is probably not happy with that much fat. Zetia also gives you a decent amount of gas, and you always have to feel bloated and puffy … It’s part of the “lifestyle” now, unfortunately. I have always learned how to live with the nauseating sensation you have from eating any fat at all, while on Zetia. However, I know two people in my own family who stopped taking it, because the side effects were too much.
One of my least favorite consequences of all these drugs or of this disease is that it leads you to take more drugs. I am on beta blockers for my heart, on acid reducers (not every day) for my acid reflux, and on OTC migraine medicine for my headaches, when they happen. I will address all my diagnoses in detail elsewhere, but my carotid arteries are so clogged with cholesterol and plaque that my brain doesn’t get enough oxygen at times. So, my headaches are horrible. I also take nitroglycerin, for the occasional chest pain, when it is too severe.
I have always looked into natural therapies, but they are not as effective as the drugs, unfortunately. Years ago, I have also contacted Dr. Dean Ornish’s group who are proving that you can prevent and even reverse severe coronary heart disease through lifestyle changes and healthy eating alone, drug free. The response from them was that given my incredibly high numbers, I will have to stay on the drug therapy that works for me, AND also maintain an active, healthy life. But the drugs are not optional in my case, they said.
I want to note that I am not running to the bottle every time I have discomfort anywhere in my body. For years now, I have made friends with pain. There is no day in my life that something doesn’t hurt (my heart, my chest, my liver, my stomach, my esophagus, etc), but 9 times out of 10, I just take my daily drugs, and move on. Live through it. I have learned to not make pain the priority, but just to treat it as part of my life.
I am, however, speaking about its presence to my doctors, and never ignoring it. I think it’s important for them to know what hurts, how often, how bad, so they can address it with more tests. And this is how I found out about many other things that have been deteriorating. But I don’t take drugs for it all.
My daily therapy of drugs today, in 2011, includes these: Lipitor (80 mg), Zetia (10 mg), Welchol (2 625 mg pills every 2-3 days), Atenolol (100 mg), Fish Oil (2000-3000 IU), Vitamin D (800 mg), Aspirin (Bayer – 325 mg). I stopped taking Vitamin E a while ago, when a new study found out that it’s really not helping heart disease patients. I am taking Vitamin D because I have a deficiency of it. My Vitamin E levels are fine.
I made this post way longer than it needed to be and yet found it impossible to cover everything I know about the drugs that I have been prescribed. But I am also sure there will be more talk about drugs to come. I hope someone finds it helpful and they can somehow relate to it, or at least to some of it.
All of our journeys are unique, of course, as unique as our own bodies. But we all share the same knowledge doctors have, and the same available therapies out there. So, maybe, some points are of interest to some of you.
So, they had several approaches to this condition. First off, being in Romania, in the communist days if the 80’s, the resources were very limited. There were very few therapies (most of them foreign) existent in the country. The “drug of the day”, believed to be a “miracle drug” for cholesterol was Cholestyramine . And that was the first drug I was put on, around the age of 8 or so.
All I remember about it is that it was in powder format and it tasted horrible. The side effects were horrible, as well – lots of nausea, stomach aches and constipation. But the worst part about it was taking it. It was the first lesson I have learned about everything else that was to come: these drugs are no joke. They will interfere with your life and sometimes will make it impossible to be comfortable or even function. But maybe, just maybe, there was a chance that those numbers will go down. Maybe. Research was scarce, so there was never any certainty about it.
I was not on Cholestyramine for long (maybe a year or so), as it did virtually nothing for my numbers. I was on a strict diet, as well, at the time, but there were almost no changes in my cholesterol levels.
I will not give a thorough account of every drug I was on for 24 years of my life now, but I can provide a list of them. To understand why some of these medications are on my list, you’ll have to try to understand the path the doctors have taken to “treat” me. I am using quotes, because I am sure (as all of the FH patients know) that I am neither treated nor will I ever be. All the therapies do is trying to keep the disease under control, but they are not able to cure it. They never will be. Not with what we know now and what we have available. Not to my knowledge, anyhow.
So, over the years, the doctors tried to keep all the fractions of cholesterol down through their therapies – and this was their main goal. They came across one main hurdle: no drugs would work. For a long time (till I was 23), nothing they tried, no diet, no medicine would make a dent in my cholesterol levels. Till I found Lipitor, in 1998, I saw no improvement on my cholesterol levels – my levels were anywhere between 525 and 609 mg/dl during that time.
Another thing that happened during this time, was that because of my huge cholesterol, my body was getting worse. Aside from new symptoms that I developed because of the many side effects of the drugs (like severe acid reflux) I had more and more things that didn’t function properly: I started having chest pains (at the age of 16), an erratic heart beat, severe migraines, high blood pressure, which was not consistent. So, along with the cholesterol medications they were prescribing, they also prescribed a lot of other drugs to control all these other “new things”.
I have been very lucky, in the sense that doctors were always preparing me for the worst. I have also been very lucky in the sense that the worst has not happened yet. They predicted strokes and heart attacks early in my 20’s or 30’s. I have turned 36 yesterday, and – knock on wood – I have not spent one day in the hospital for such things. But this is the topic of another account.
Back to the list of medicines that I have been prescribed since 1983 – it follows bellow, and please feel free to google or wiki any of them. I have been mostly successful to find out a bit about each one and their side effects on the net alone and there is no point in repeating here what so many resources out there make available:
Before 1998: Asclerol, Aslovital, Cholestyramine, Trimeg, Peritol, Atenolol, Niacin; after 1998: Lipitor, Vitamin E, Zoocor, Niaspan, Zetia, Protonix, Crestor, Vytorin, Prilosec, Fish Oil, Welchol, Trilipix, Bystolic, Nitroglycerin, Vitamin D.
1998 was the year I moved to the US. And that is also the year when the course of the therapies had changed, and the access to newer, better, more powerful drugs had opened.
You will notice that there are a lot of drugs here that are very similar (like all the statins: Lipitor, Zoocor, Vytorin and Crestor). The reason for this is that even Lipitor stopped working for me, after a while. You always have to remember that FH is a genetic disease. So, unless you change something about your genetic makeup, this affliction cannot be eradicated. You can “trick” your liver to behave for a while, but eventually, the body will develop immunity to any drug and will do as it’s programmed at birth. So, when Lipitor stopped working, they tried other statins that were on the market. With no result. Every time they tried anything else but Lipitor, my body would not “listen” and my cholesterol would jump by 100 points, or more.
So, the alternate course was (and it is a school of thought in treating this particular kind of hypercholesterolemia) to add more drugs to the one that initially worked (in my case, Lipitor). These added drugs usually work in different ways that Lipitor. Thus, they added, first Zetia. And then, when Lipitor + Zetia stopped working efficiently as well, they added Welchol on top of them. The point at which I am now, it’s believed that these three drugs are the best combination for my cholesterol levels to stay around 314 mg/dl (total).
As recently as last fall, they also tried to add Trilipix, which is a newer drug (not much research has been done), but I did not tolerate it well, so I stopped taking it. Because my levels have never been “normal”, every time there is a new drug/ therapy on the market, my doctors want me to try it – they always shoot for what’s known to be a “safe level” of cholesterol. So, I have been pretty much everyone’s first patient to try any new drug therapy for cholesterol. More often than not, I either cannot take it, because of the side effects, or it does nothing for me, so they stop it. Zetia and Welchol have stayed, because I have seen results with them, and I can “live” with the side effects, somewhat.
I have seen my levels drop at 282 mg/dl, when I was taking Welchol every day, four times a day. The pain from gas and constipation that I was experiencing, though, were absolutely unbearable! I would wake up in the middle of the night in hot sweats, crying from abdominal pain. I found an account online of a patient who described the symptoms of Welchol perfectly: he said “it feels like someone hit you with a baseball bat straight in the stomach”. It’s very accurate. So, now, I take Welchol about twice a week.
I will write about my own approach to this disease, because I think it’s important to notice that with any sickness there are three forces that govern it: your doctors, nature (or God), and yourself. And as far as I am concerned, I have called off therapies because I always vote for quality of life rather than quantity of life. So, sometimes, even if the drugs were seemingly working, I said “no”, because I wanted to live my life first, albeit short, maybe, and then make the numbers fall.
Aside from the debilitating effects of Welchol, there have been many other side effects I have either learned to live with or pushed aside with a cringe. Not before trying for months to allow myself to get used to them. Some of the most notable are the side effects of Niacin. The flashes I experienced, the lightheadedness and sharp tingles (or burning sensations) all over my body make me feel like I am literally going to die. Although Niacin is a natural product, I have not been able to take it, because I cannot handle the flares, not even for several minutes, twice a day.
I have learned to live with the effects of Zetia, though – this medicine works by absorbing all the cholesterol that comes from your diet inside your intestine, and eliminating it through your digestive tract. Thus, the cholesterol never goes into your blood stream. When I occasionally eat shrimp, for instance, which has a high quantity of cholesterol, my stomach is in knots because Zetia is probably not happy with that much fat. Zetia also gives you a decent amount of gas, and you always have to feel bloated and puffy … It’s part of the “lifestyle” now, unfortunately. I have always learned how to live with the nauseating sensation you have from eating any fat at all, while on Zetia. However, I know two people in my own family who stopped taking it, because the side effects were too much.
One of my least favorite consequences of all these drugs or of this disease is that it leads you to take more drugs. I am on beta blockers for my heart, on acid reducers (not every day) for my acid reflux, and on OTC migraine medicine for my headaches, when they happen. I will address all my diagnoses in detail elsewhere, but my carotid arteries are so clogged with cholesterol and plaque that my brain doesn’t get enough oxygen at times. So, my headaches are horrible. I also take nitroglycerin, for the occasional chest pain, when it is too severe.
I have always looked into natural therapies, but they are not as effective as the drugs, unfortunately. Years ago, I have also contacted Dr. Dean Ornish’s group who are proving that you can prevent and even reverse severe coronary heart disease through lifestyle changes and healthy eating alone, drug free. The response from them was that given my incredibly high numbers, I will have to stay on the drug therapy that works for me, AND also maintain an active, healthy life. But the drugs are not optional in my case, they said.
I want to note that I am not running to the bottle every time I have discomfort anywhere in my body. For years now, I have made friends with pain. There is no day in my life that something doesn’t hurt (my heart, my chest, my liver, my stomach, my esophagus, etc), but 9 times out of 10, I just take my daily drugs, and move on. Live through it. I have learned to not make pain the priority, but just to treat it as part of my life.
I am, however, speaking about its presence to my doctors, and never ignoring it. I think it’s important for them to know what hurts, how often, how bad, so they can address it with more tests. And this is how I found out about many other things that have been deteriorating. But I don’t take drugs for it all.
My daily therapy of drugs today, in 2011, includes these: Lipitor (80 mg), Zetia (10 mg), Welchol (2 625 mg pills every 2-3 days), Atenolol (100 mg), Fish Oil (2000-3000 IU), Vitamin D (800 mg), Aspirin (Bayer – 325 mg). I stopped taking Vitamin E a while ago, when a new study found out that it’s really not helping heart disease patients. I am taking Vitamin D because I have a deficiency of it. My Vitamin E levels are fine.
I made this post way longer than it needed to be and yet found it impossible to cover everything I know about the drugs that I have been prescribed. But I am also sure there will be more talk about drugs to come. I hope someone finds it helpful and they can somehow relate to it, or at least to some of it.
All of our journeys are unique, of course, as unique as our own bodies. But we all share the same knowledge doctors have, and the same available therapies out there. So, maybe, some points are of interest to some of you.
Wednesday, April 6, 2011
Study: Stem Cells
I will go over all the therapies and treatments I have gone through myself all these years, but I just wanted to make note of a new study that I have not heard before: stem cells and gene repair therapy to cure FH.
I have known all along that being a genetic disorder, no drugs will ever fix this. Many times I was offered the option of liver transplant - the main culprit in the poor metabolism of fats.
I knew there was not going to be long before they address the real source, the genes - and here it is: http://www.medicalnewstoday.com/articles/220995.php.
I have known all along that being a genetic disorder, no drugs will ever fix this. Many times I was offered the option of liver transplant - the main culprit in the poor metabolism of fats.
I knew there was not going to be long before they address the real source, the genes - and here it is: http://www.medicalnewstoday.com/articles/220995.php.
Saturday, March 26, 2011
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.
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.
Tuesday, February 22, 2011
Normal Cholesterol Levels
According to the American Heart Association (AHA), these are the recommended levels of cholesterol and triglycerides and what they mean for your heart health:
(click on this picture for a larger view)
For specific definitions of what cholesterol and what triglycerides are and how they are different from one another, you may choose to just do a Google search (there are many available definitions online, from various sources), or follow these links:
Cholesterol
and
Triglycerides
(click on this picture for a larger view)
For specific definitions of what cholesterol and what triglycerides are and how they are different from one another, you may choose to just do a Google search (there are many available definitions online, from various sources), or follow these links:
Cholesterol
and
Triglycerides
Sunday, February 20, 2011
Welcome
Thank you for stopping by on LivingWithFH.blogspot.com. I intend to keep this blog updated with notes on my personal journey into living with familial hypercholesterolemia. The blog will provide my first hand report on what this disease can bring about, what the doctors tell me, and how life is different, in my case. Although other sufferers of hypercholesterolemia might find helpful information on this blog, it addresses only the familial, or the inherited kind.
I also would like to keep the blog updated with links to researches that are constantly being done on cholesterol, atherosclerosis, and heart disease, new findings in this disorder, as well as other support forums (chat rooms, other blogs, etc) for people like me. I have been looking for a place that offers all this, and there are not many.
I also encourage you, the reader, to post comments, questions, and your own links to what you find on this topic. Due to unwelcome spam and other unwanted traffic, I will need to approve all the comments, but please post them nonetheless.
In the first few blogs, I will talk mostly about my history, how the disease was diagnosed, when I was 8, what my cholesterol levels were at the time, and how I managed it during the following 17 years while living in Romania. The drugs but mostly the research were scarce there, and every doctor visit was a disappointment – there was no hope.
Once I moved to The States, the roller-coaster of trying any drug therapy known to the medical world began. In a lot of ways it was a blessing, and in a lot others, a curse, as well.
As the name of the disease suggests, this is a “familial”, or “inherited”, or “genetic” disorder. In this particular case, lifestyle choices have little to no effect on how the cholesterol level and its consequences behave. And because it is genetic, there is no cure for it. So, whatever treatment you’re on, it will have to last for as long as you live. I will address all these statements in the blogs to come. There are controversies in the patient world that suggest that heredity has little to do with how this disease behaves. I will give you my own account.
I will get more into the details of what the cholesterol levels mean in the following posts, but just for this brief intro: according to the American Heart Association, the “desirable level of total cholesterol should be up to 200 mg/dl. My total cholesterol was over 700 mg/dl when I was 8. It is over 300 mg/dl when this blog was started in 2011.
Because of progress in research, a new kind of medication has been good for me, the PCSK9 drugs, and that has brought my numbers down to 198 mg/dl, when used in conjunction with statins and zetia.
I found out in 2017 (36 years after the first diagnosis) that I have HoFH, the more rare and more severe type of FH. Up to that point, the information you find here will be on FH, generally. From that point on, I have included my journey with HoFH here, given the new diagnosis and I am following some of the research and resources available for this specific type of FH, as well.
But despite all the grim blood test results, and all the prognoses that a heart attack or a stroke might be around the corner, in months, not years, I have managed to live for almost 36 years free of any major coronary or brain events.
It has been a journey of hope, a celebration of life, and a lesson in self knowledge, as well. It’s been a trip that has made me, in a way, the person I am today – there is not one day in my life that my condition is not on my mind, and yet, I believe I have had a full and “normal” life, in many wonderful ways.
I thank you all, in advance, for your presence here, and I encourage you to please send me all your thoughts, ideas, suggestions on how I can improve this site, over time. As I tell my doctors: I am in this for the long haul.
I also would like to keep the blog updated with links to researches that are constantly being done on cholesterol, atherosclerosis, and heart disease, new findings in this disorder, as well as other support forums (chat rooms, other blogs, etc) for people like me. I have been looking for a place that offers all this, and there are not many.
I also encourage you, the reader, to post comments, questions, and your own links to what you find on this topic. Due to unwelcome spam and other unwanted traffic, I will need to approve all the comments, but please post them nonetheless.
In the first few blogs, I will talk mostly about my history, how the disease was diagnosed, when I was 8, what my cholesterol levels were at the time, and how I managed it during the following 17 years while living in Romania. The drugs but mostly the research were scarce there, and every doctor visit was a disappointment – there was no hope.
Once I moved to The States, the roller-coaster of trying any drug therapy known to the medical world began. In a lot of ways it was a blessing, and in a lot others, a curse, as well.
As the name of the disease suggests, this is a “familial”, or “inherited”, or “genetic” disorder. In this particular case, lifestyle choices have little to no effect on how the cholesterol level and its consequences behave. And because it is genetic, there is no cure for it. So, whatever treatment you’re on, it will have to last for as long as you live. I will address all these statements in the blogs to come. There are controversies in the patient world that suggest that heredity has little to do with how this disease behaves. I will give you my own account.
I will get more into the details of what the cholesterol levels mean in the following posts, but just for this brief intro: according to the American Heart Association, the “desirable level of total cholesterol should be up to 200 mg/dl. My total cholesterol was over 700 mg/dl when I was 8. It is over 300 mg/dl when this blog was started in 2011.
Because of progress in research, a new kind of medication has been good for me, the PCSK9 drugs, and that has brought my numbers down to 198 mg/dl, when used in conjunction with statins and zetia.
I found out in 2017 (36 years after the first diagnosis) that I have HoFH, the more rare and more severe type of FH. Up to that point, the information you find here will be on FH, generally. From that point on, I have included my journey with HoFH here, given the new diagnosis and I am following some of the research and resources available for this specific type of FH, as well.
But despite all the grim blood test results, and all the prognoses that a heart attack or a stroke might be around the corner, in months, not years, I have managed to live for almost 36 years free of any major coronary or brain events.
It has been a journey of hope, a celebration of life, and a lesson in self knowledge, as well. It’s been a trip that has made me, in a way, the person I am today – there is not one day in my life that my condition is not on my mind, and yet, I believe I have had a full and “normal” life, in many wonderful ways.
I thank you all, in advance, for your presence here, and I encourage you to please send me all your thoughts, ideas, suggestions on how I can improve this site, over time. As I tell my doctors: I am in this for the long haul.
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