On a trip to Canada this spring, my sister introduced me to a whole new culinary invention – bagel thins. A long time lover of bagels, I have always been worried about the calorie count and fat quantity in bagels – not enough, though, to stop eating them altogether! But now, I don’t have to stop!
My sister gets the President’s Choice brand in Montreal and I was afraid we cannot get that here. But quite accidentally, we stumbled upon the Thomas’ (as in Thomas’ English Muffins) brand – which we could find pretty much everywhere – any grocery store, and even WalMart has them! And they are very similar in taste, and what a bonus for being so good for you, too!
They are my new best breakfast friend! I love the “Everything” variety, and with very low fat, no cholesterol and lots of fiber, I can enjoy them fully, with no guilt. And you don't have to skimp on the flavor either - it's all there, I promise! I spread some “fake butter” on them when I toast them, or a very small amount (about half of a table spoon) of low fat cream cheese, or even some home made strawberry preserves … Yum!
"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)
Monday, June 13, 2011
Thursday, June 9, 2011
New Numbers
The “ultimatum” appointment happened last week. Let me explain - I have referred to it briefly before, but just a refresher: my new cardiologist is looking for ways to get my cholesterol even more down than it is – as all the doctors attempt, of course. So, since my new drug therapy (I ditched the Welchol because it made me miserable and the lowering it was adding was not huge, so I am just on Lipitor +Zetia) does not manage to take my levels down to “normal”, he is looking for “other ways”.
One of his other ways was LDL aphaeresis. As I have mentioned before, I was suggested this therapy before, but I have always refused to attempt it, for various (personal as well as scientific, in my opinion) reasons. So, this time, he told me he wants me to research this and then give him an educated answer. The answer was still NO on my part. I told him my decision was mostly personal and “philosophical, if you will” and he understood – or at least he said he did.
He also revealed my new numbers – a result of a blood test done in late April was never communicated to me, and I got the new results now.
I am now at:
Total Cholesterol: 285 mg/dl (down from 314)
Triglycerides: 98 mg/dl (up from 90 – oops!)
HDL cholesterol: 36 mg/dl (down from 40 – not good!)
LDL cholesterol: 230 mg/dl (down from 255)
Cholesterol/ HDL ratio: 7.9 (normal between 0-3.1 - yikes!!)
So, there is good news and bad news there – lots of bad things are down (lowest I have ever seen them), but the “happy cholesterol” (HDL) is also down – this is one of the downsides of statins, it seems – it brings everything down, good or bad! But then I never quite understood how we can have “good” and “bad” cholesterol … and we want one high and the other low … Just a mystery of science, I suppose …
My blood pressure was also high at the time of the appointment (158 over 98) and he now would like me to keep a blood pressure journal (daily or more often than that, when I have time and remember) and come back in a month, with all my readings. He will determine then, based on my readings, whether I need to be on medicine for this or not. We shall see.
Since I said no to the LDL aphaeresis, he came up with a backup plan. There is a new drug, now, still in research phase, referred to as “Apo 1 Milano”, among other things. The story of it is long (and somewhat boring), but if it works, it will be beneficial for the folks who have this mechanism broken at the moment – read more about what it does and does not do, here.
I will not go into the details if why I personally don’t think it will be beneficial for me (I have a normal level of Apo A1 in my blood, as discovered in the Berkley Lab test) , but we will see what the future brings – it’s still too soon to talk about it, I think.
The good news is that, from what they know now, the side effects of this drug will not be significant. But how will the benefits compare? I guess only time, and lots of clinical studies, will tell.
One of his other ways was LDL aphaeresis. As I have mentioned before, I was suggested this therapy before, but I have always refused to attempt it, for various (personal as well as scientific, in my opinion) reasons. So, this time, he told me he wants me to research this and then give him an educated answer. The answer was still NO on my part. I told him my decision was mostly personal and “philosophical, if you will” and he understood – or at least he said he did.
He also revealed my new numbers – a result of a blood test done in late April was never communicated to me, and I got the new results now.
I am now at:
Total Cholesterol: 285 mg/dl (down from 314)
Triglycerides: 98 mg/dl (up from 90 – oops!)
HDL cholesterol: 36 mg/dl (down from 40 – not good!)
LDL cholesterol: 230 mg/dl (down from 255)
Cholesterol/ HDL ratio: 7.9 (normal between 0-3.1 - yikes!!)
So, there is good news and bad news there – lots of bad things are down (lowest I have ever seen them), but the “happy cholesterol” (HDL) is also down – this is one of the downsides of statins, it seems – it brings everything down, good or bad! But then I never quite understood how we can have “good” and “bad” cholesterol … and we want one high and the other low … Just a mystery of science, I suppose …
My blood pressure was also high at the time of the appointment (158 over 98) and he now would like me to keep a blood pressure journal (daily or more often than that, when I have time and remember) and come back in a month, with all my readings. He will determine then, based on my readings, whether I need to be on medicine for this or not. We shall see.
Since I said no to the LDL aphaeresis, he came up with a backup plan. There is a new drug, now, still in research phase, referred to as “Apo 1 Milano”, among other things. The story of it is long (and somewhat boring), but if it works, it will be beneficial for the folks who have this mechanism broken at the moment – read more about what it does and does not do, here.
I will not go into the details if why I personally don’t think it will be beneficial for me (I have a normal level of Apo A1 in my blood, as discovered in the Berkley Lab test) , but we will see what the future brings – it’s still too soon to talk about it, I think.
The good news is that, from what they know now, the side effects of this drug will not be significant. But how will the benefits compare? I guess only time, and lots of clinical studies, will tell.
Friday, June 3, 2011
The Journal of My Many Diagnoses and Tests
Over the years, I have been through more tests and investigations than most people who have lived for 80 years, healthily! And when I will proceed with the litany of what this body has been through for the past 30 years, you will understand that this is hardly any exaggeration!
In a way, I am immune to it. In another, I feel lucky that people cared enough, and worried enough about me to investigate, and this way I have a clearer, perhaps more in depth understanding of what’s going on.
I have thought long and hard about how to list all the things that have been found over the years, and also all the tests that revealed them. If anyone finds this blog interesting, I would like them to have an example of what such a patient goes through – maybe they can relate to symptoms but their doctor is not recommending some of these things, and maybe they can inquire their own doctors about the need for them to investigate?!
So, I apologize in advance if this is boring … but I really didn’t know how to list them all. I hope it is, however, helpful. And, as always – thank you for reading.
I will eliminate the pointing out of the actual years in which these diagnoses were pronounced, and this will make it less intrinsically personal, but I will try to keep the rest.
Initially, my disease was pronounced as familial dyslipidemia. Because all my lipid levels were high, they figured all my fat fractions are affected. With diet, however, my triglycerides went to normal, and only my cholesterol ( total and LDL ) remained high – which “switched” the disease to familial hypercholesterolemia (FH). And that is an interesting point: if you have normal triglycerides, that is your cue that your diet, and your lifestyle is OK. Triglycerides, I was told, are seldom inherited as very high. I have not checked into this on my own, however, as I have had them normal for most of my life.
Amongst the various doctors I have seen, most of which were internists and cardiologists, I have also been recommended to endocrinologists – they believed that somehow, my incredibly high values were due to some hormonal imbalance – especially when I was in puberty – and they tried to give me hormones to “balance me out”. I am grateful to my mom, because she didn’t take that for the final answer, and asked to see an internist who gave us a second opinion that this was not in any way a hormone related disease. I have never been on hormone therapy for this.
My "aftermath" of the eye lipoma: I had this removed (burnt with acid) more than 10 years ago, and a small fraction of it is still very faintly visible on my eyelid.
One of the side effects of FH is the visible lipomas that grow on your body, which I have had to have removed a couple of times so far. They are basically benign cholesterol deposits that could grow to various sizes, under your skin, or deeper, and they could be anywhere from the size of a needle point to the size of a baseball. I have had one removed from my elbow, another one (smaller) from my eyelid, and now, I am growing one which feels like the size of a golf ball, on my neck. I am debating whether to have that remove in the near future or to wait till it gets bigger – which I am sure it will happen. This last one, on my neck grew in the past 8-9 years quite considerably. It was not bigger than a penny in diameter in the beginning, and now, it’s quite bothersome, not to mention not very esthetically pleasing. Good thing I have long hair which, for now, can cover it.
My scar from my elbow surgery, where I had a lipoma removed - about 10 stitches
Along with these visible deposits, there are various internal organs that also have them – amongst the ones they saw with an ultrasound or a simple eye exam, they know I have them on my pancreas, liver, as well as on my retina.
The massive "bump" on my neck, under my thick, black hair - the lipoma that might have to come out, surgically, soon.
Now, to the more interesting bits! The heart disease. I have several manifestations of heart and cardio vascular disease. Since I was 16, they have known I have an “undefined” aortic valve. Now, they have called more properly as a weakened or leaking aortic valve, coupled with a hardened wall of my lower left chamber of the heart (left ventricle). I have several deposits of cholesterol, which are estimated to close various vessels inside of my heart’s left hand side in a percentage of anywhere between 30 and 60%. They assume that the aortic valve and the hardened wall are results of years of living with high cholesterol, where the heart tried extra strongly to pump the blood, all this time with thickened blood vessel walls and thicker blood.
The other symptoms of the diagnosed heart disease are higher, arrhythmic pulse, high blood pressure, chest pains, shortness of breath during exertion, or sometimes even at rest, and the fact that nitroglycerin makes the chest pains go away, practically. A “fun” note on that: when you travel with nitroglycerin, like I do, you sometimes get questioned by the TSA staff whether you’re on such a drug! Just admit it – they can see the pills inside the Xray machine, because nitroglycerine, an explosive, of course, shines bright green on the security cameras.
A nice man in an airport once told me to remove them from the bag, because the Xray machine actually weakens the strength in the pills. I almost always forget I have them in there, however … You will need a new prescription for these at least every 6 months! And once you know they work, you go everywhere with them.
Also a result of vascular disease are my migraines. I have high cholesterol deposits that narrow my blood vessels in my neck – my carotid artery most precisely – by 40-60%. Consequently, my brain is not irrigated properly, and I get severe headaches from the lack of oxygen. I am not on any prescription medicine for headaches – I just take the OTC Excedrin and it seems, so far, to be the only one that does the trick on them.
As you well know, the more severe diagnoses of all these are heart attacks and strokes. And I am prone to both, at this point in my life. I have been often told that I am just a walking timed bomb, because the pictures and the symptoms show a very advanced disease, even at my “young” 36 years of age.
As I might have mentioned before, heart attacks are not common in my family, even on the side that brought along FH! Strokes, however, are very common! From mild ones to debilitating ones that render one bed ridden, or dead. And I would say that when I look at myself, my migraines and headaches are far more often and common than the chest pains or the shortness of breath.
Among the tests I did for my heart, there were: EKG (which I do every year, almost like a physical), Echo - cardiogram, ultrasound of the heart, sound Doppler of the peripheral arteries of my legs, ultrasound of my carotid arteries (I have done these every 2 years for the past 6 years), a nuclear stress test (twice in the past 6 years), I have had a holter monitor attached to me for 24 hours to monitor the activity of my heart and I have had one angiogram, at the age of 30. I also had an MRI of the back of my neck, to determine whether my “growth” was malignant – and it was determined as a lipoma, which is by definition benign.
Although they did find cholesterol deposits and plaque in vital arteries of my body (aorta and carotid, for two), they have not yet decided to do anything invasive for them, other than to repeat the tests, watch my symptoms closely and kind of keep an eye on everything. Because of my age, they don’t want to do anything too drastic yet – there is a long road of “recuperation” (read: “maintenance”) and even more thorough investigations not to mention more medications to take if a stint or a balloon would be placed in any of my vital points! They basically said, “if you’re dealing with a 70 year old patient that has 20-30 years to live, that road is not that long or that bad, but I am dealing with a 30 year old patient, so the road is a lot longer, and I am not sure the body can take that”. So, they’re letting the body progress at its natural step, while I am keeping an eye on medications, diet and a healthy lifestyle.
Also, I have managed to keep a close to normal life – I have always worked full time, and I have managed to keep pretty busy even outside of work. My heart showed in the stress test that it’s pumping at 80 - 90% of its capacity, even with exertion, which is pretty good! I am not able to run, or do more strenuous exercises, but I walk, and hike, when the weather allows, and I used to do yoga for years, regularly – more about my exercise routines in a future post.
So, right now, all I do is keep in very close touch with my cardiologist and stay on the medication and diet I have been following for years. I also check my cholesterol and liver panels every 3 months and I see my regular doctor twice a year.
Another test I was fortunate enough to get for free (when you’re a Guinea pig, you know, they give stuff to you) was a Berkley test . Berkley analyzes cholesterol and blood proteins (which can attach to cholesterol particles) apparently like no other lab – they break it down to very minute fractions and determine which ones of those fractions are the “troubled” ones. The lipoprotein “little a” was suspected to be high for me – but they found out that it is not, in fact. What they did find with this test was that I have low Vitamin D, which is lately believed to help with heart health, among having other many benefits in other health areas.
I was seeing a pharmacist specializing in lipid disorders, who worked with my former cardiologist’s office in Greensboro, NC when I was recommended for this test. You can inquire your (regular) doctor about this test, though. I don’t think all labs do it, but in NC, most of them had access to the test, although it had to be processed elsewhere. Another great thing that comes with it is that for 60 days you get a free consultation with a Berkley lab assistant that can look at your particular lipid profile and your own lifestyle and suggest adjustments – they will call you about once a month to keep in touch and will go over your progress with you and your numbers, your symptoms, etc. They are extremely professional and very responsive, which is somewhat hard to find in this profession anymore.
My disease has had a significant role in the decision I have made a long time ago to not have any children. I simply cannot conceive bringing them into this world with this disease, or even putting my body through the extra effort of child birth, when it already feels so abused! I am not considering myself too chicken, or too selfish – on the contrary, I think I am more responsible, if anything – if I were to justify my choice, which I have very often have had to do. But other than this, as I have said, I think I have managed to have a pretty “normal” life so far.
This disease is part of me, and part of my daily routine, now. I don’t and I have never hated it! In many ways, I consider it a blessing, an opportunity to respect life more, and health even mucher. It has made me more aware of my body, and of what goes in it. More aware of people’s frailties, even when the outward demeanor is not telling.
The last stop in my test-diagnoses extravaganza is the LDL aphaeresis . About four months ago, my new cardiologist, in UT, recommended it –which was not news to me. I have been told about this for a very long time, just like I have also been suggested that a liver transplant would be a more permanent answer for my condition. Unlike any other doctor I have seen before, my UT cardio doctor gave me about 3 months to research and seriously think about this procedure, and then come back with an answer but not to just come back and say “I don’t want to do it, because I don’t want to do it”. He needed a more informed decision.
I don’t want to do it, for many personal reasons: I don’t want to do it because I can’t see myself (yet!) committing my life to a hospital room several times a week or even a month for years for a blood dialysis! I can’t see myself worrying about the side effects and the weakness when it happens. I want to live – that has always been my motto – and not just to exist! And, for the most part, I feel good. I have managed to keep my cholesterol relatively down (for me!) for years, and I am mobile! I can do what I want to do, when I want to do it. There is something to be said for freedom.
Plus, I am more fortunate than most, because drugs (and all the other life adjustments) do work for me. Some. Sure, my levels have never been normal and the toll this is taking on my body is nothing to sneeze at! But coming from 790 mg/dl of total cholesterol to the 300 mg/dl range is progress! And so far I am happy with it! I have read about patients that have been opting for aphaeresis and they have come to that as a last resort when nothing else worked for them and the quality of their lives was compromised. I am thinking that my case is not there yet.
As I have said many times before in this blog – all these are personal decisions and observations! In no way do I “recommend” my choices and lifestyle to anyone in the world! Just remember – I share but do not give. So, please just use this as a peek into my life and not as a guide into your own. Make your own decisions! Listen to your doctors! Read! Keep updated! Join a support group – of which there were almost none till very recently! But don’t ever stop trying to understand this on your own, personal, terms. Understanding it, and knowing the most you can know about FH and about your own body and keeping up with the ever changing science is power. Tap into that and you will survive.
In a way, I am immune to it. In another, I feel lucky that people cared enough, and worried enough about me to investigate, and this way I have a clearer, perhaps more in depth understanding of what’s going on.
I have thought long and hard about how to list all the things that have been found over the years, and also all the tests that revealed them. If anyone finds this blog interesting, I would like them to have an example of what such a patient goes through – maybe they can relate to symptoms but their doctor is not recommending some of these things, and maybe they can inquire their own doctors about the need for them to investigate?!
So, I apologize in advance if this is boring … but I really didn’t know how to list them all. I hope it is, however, helpful. And, as always – thank you for reading.
I will eliminate the pointing out of the actual years in which these diagnoses were pronounced, and this will make it less intrinsically personal, but I will try to keep the rest.
Initially, my disease was pronounced as familial dyslipidemia. Because all my lipid levels were high, they figured all my fat fractions are affected. With diet, however, my triglycerides went to normal, and only my cholesterol ( total and LDL ) remained high – which “switched” the disease to familial hypercholesterolemia (FH). And that is an interesting point: if you have normal triglycerides, that is your cue that your diet, and your lifestyle is OK. Triglycerides, I was told, are seldom inherited as very high. I have not checked into this on my own, however, as I have had them normal for most of my life.
Amongst the various doctors I have seen, most of which were internists and cardiologists, I have also been recommended to endocrinologists – they believed that somehow, my incredibly high values were due to some hormonal imbalance – especially when I was in puberty – and they tried to give me hormones to “balance me out”. I am grateful to my mom, because she didn’t take that for the final answer, and asked to see an internist who gave us a second opinion that this was not in any way a hormone related disease. I have never been on hormone therapy for this.
My "aftermath" of the eye lipoma: I had this removed (burnt with acid) more than 10 years ago, and a small fraction of it is still very faintly visible on my eyelid.
One of the side effects of FH is the visible lipomas that grow on your body, which I have had to have removed a couple of times so far. They are basically benign cholesterol deposits that could grow to various sizes, under your skin, or deeper, and they could be anywhere from the size of a needle point to the size of a baseball. I have had one removed from my elbow, another one (smaller) from my eyelid, and now, I am growing one which feels like the size of a golf ball, on my neck. I am debating whether to have that remove in the near future or to wait till it gets bigger – which I am sure it will happen. This last one, on my neck grew in the past 8-9 years quite considerably. It was not bigger than a penny in diameter in the beginning, and now, it’s quite bothersome, not to mention not very esthetically pleasing. Good thing I have long hair which, for now, can cover it.
My scar from my elbow surgery, where I had a lipoma removed - about 10 stitches
The massive "bump" on my neck, under my thick, black hair - the lipoma that might have to come out, surgically, soon.
Now, to the more interesting bits! The heart disease. I have several manifestations of heart and cardio vascular disease. Since I was 16, they have known I have an “undefined” aortic valve. Now, they have called more properly as a weakened or leaking aortic valve, coupled with a hardened wall of my lower left chamber of the heart (left ventricle). I have several deposits of cholesterol, which are estimated to close various vessels inside of my heart’s left hand side in a percentage of anywhere between 30 and 60%. They assume that the aortic valve and the hardened wall are results of years of living with high cholesterol, where the heart tried extra strongly to pump the blood, all this time with thickened blood vessel walls and thicker blood.
The other symptoms of the diagnosed heart disease are higher, arrhythmic pulse, high blood pressure, chest pains, shortness of breath during exertion, or sometimes even at rest, and the fact that nitroglycerin makes the chest pains go away, practically. A “fun” note on that: when you travel with nitroglycerin, like I do, you sometimes get questioned by the TSA staff whether you’re on such a drug! Just admit it – they can see the pills inside the Xray machine, because nitroglycerine, an explosive, of course, shines bright green on the security cameras.
A nice man in an airport once told me to remove them from the bag, because the Xray machine actually weakens the strength in the pills. I almost always forget I have them in there, however … You will need a new prescription for these at least every 6 months! And once you know they work, you go everywhere with them.
Also a result of vascular disease are my migraines. I have high cholesterol deposits that narrow my blood vessels in my neck – my carotid artery most precisely – by 40-60%. Consequently, my brain is not irrigated properly, and I get severe headaches from the lack of oxygen. I am not on any prescription medicine for headaches – I just take the OTC Excedrin and it seems, so far, to be the only one that does the trick on them.
As you well know, the more severe diagnoses of all these are heart attacks and strokes. And I am prone to both, at this point in my life. I have been often told that I am just a walking timed bomb, because the pictures and the symptoms show a very advanced disease, even at my “young” 36 years of age.
As I might have mentioned before, heart attacks are not common in my family, even on the side that brought along FH! Strokes, however, are very common! From mild ones to debilitating ones that render one bed ridden, or dead. And I would say that when I look at myself, my migraines and headaches are far more often and common than the chest pains or the shortness of breath.
Among the tests I did for my heart, there were: EKG (which I do every year, almost like a physical), Echo - cardiogram, ultrasound of the heart, sound Doppler of the peripheral arteries of my legs, ultrasound of my carotid arteries (I have done these every 2 years for the past 6 years), a nuclear stress test (twice in the past 6 years), I have had a holter monitor attached to me for 24 hours to monitor the activity of my heart and I have had one angiogram, at the age of 30. I also had an MRI of the back of my neck, to determine whether my “growth” was malignant – and it was determined as a lipoma, which is by definition benign.
Although they did find cholesterol deposits and plaque in vital arteries of my body (aorta and carotid, for two), they have not yet decided to do anything invasive for them, other than to repeat the tests, watch my symptoms closely and kind of keep an eye on everything. Because of my age, they don’t want to do anything too drastic yet – there is a long road of “recuperation” (read: “maintenance”) and even more thorough investigations not to mention more medications to take if a stint or a balloon would be placed in any of my vital points! They basically said, “if you’re dealing with a 70 year old patient that has 20-30 years to live, that road is not that long or that bad, but I am dealing with a 30 year old patient, so the road is a lot longer, and I am not sure the body can take that”. So, they’re letting the body progress at its natural step, while I am keeping an eye on medications, diet and a healthy lifestyle.
Also, I have managed to keep a close to normal life – I have always worked full time, and I have managed to keep pretty busy even outside of work. My heart showed in the stress test that it’s pumping at 80 - 90% of its capacity, even with exertion, which is pretty good! I am not able to run, or do more strenuous exercises, but I walk, and hike, when the weather allows, and I used to do yoga for years, regularly – more about my exercise routines in a future post.
So, right now, all I do is keep in very close touch with my cardiologist and stay on the medication and diet I have been following for years. I also check my cholesterol and liver panels every 3 months and I see my regular doctor twice a year.
Another test I was fortunate enough to get for free (when you’re a Guinea pig, you know, they give stuff to you) was a Berkley test . Berkley analyzes cholesterol and blood proteins (which can attach to cholesterol particles) apparently like no other lab – they break it down to very minute fractions and determine which ones of those fractions are the “troubled” ones. The lipoprotein “little a” was suspected to be high for me – but they found out that it is not, in fact. What they did find with this test was that I have low Vitamin D, which is lately believed to help with heart health, among having other many benefits in other health areas.
I was seeing a pharmacist specializing in lipid disorders, who worked with my former cardiologist’s office in Greensboro, NC when I was recommended for this test. You can inquire your (regular) doctor about this test, though. I don’t think all labs do it, but in NC, most of them had access to the test, although it had to be processed elsewhere. Another great thing that comes with it is that for 60 days you get a free consultation with a Berkley lab assistant that can look at your particular lipid profile and your own lifestyle and suggest adjustments – they will call you about once a month to keep in touch and will go over your progress with you and your numbers, your symptoms, etc. They are extremely professional and very responsive, which is somewhat hard to find in this profession anymore.
My disease has had a significant role in the decision I have made a long time ago to not have any children. I simply cannot conceive bringing them into this world with this disease, or even putting my body through the extra effort of child birth, when it already feels so abused! I am not considering myself too chicken, or too selfish – on the contrary, I think I am more responsible, if anything – if I were to justify my choice, which I have very often have had to do. But other than this, as I have said, I think I have managed to have a pretty “normal” life so far.
This disease is part of me, and part of my daily routine, now. I don’t and I have never hated it! In many ways, I consider it a blessing, an opportunity to respect life more, and health even mucher. It has made me more aware of my body, and of what goes in it. More aware of people’s frailties, even when the outward demeanor is not telling.
The last stop in my test-diagnoses extravaganza is the LDL aphaeresis . About four months ago, my new cardiologist, in UT, recommended it –which was not news to me. I have been told about this for a very long time, just like I have also been suggested that a liver transplant would be a more permanent answer for my condition. Unlike any other doctor I have seen before, my UT cardio doctor gave me about 3 months to research and seriously think about this procedure, and then come back with an answer but not to just come back and say “I don’t want to do it, because I don’t want to do it”. He needed a more informed decision.
I don’t want to do it, for many personal reasons: I don’t want to do it because I can’t see myself (yet!) committing my life to a hospital room several times a week or even a month for years for a blood dialysis! I can’t see myself worrying about the side effects and the weakness when it happens. I want to live – that has always been my motto – and not just to exist! And, for the most part, I feel good. I have managed to keep my cholesterol relatively down (for me!) for years, and I am mobile! I can do what I want to do, when I want to do it. There is something to be said for freedom.
Plus, I am more fortunate than most, because drugs (and all the other life adjustments) do work for me. Some. Sure, my levels have never been normal and the toll this is taking on my body is nothing to sneeze at! But coming from 790 mg/dl of total cholesterol to the 300 mg/dl range is progress! And so far I am happy with it! I have read about patients that have been opting for aphaeresis and they have come to that as a last resort when nothing else worked for them and the quality of their lives was compromised. I am thinking that my case is not there yet.
As I have said many times before in this blog – all these are personal decisions and observations! In no way do I “recommend” my choices and lifestyle to anyone in the world! Just remember – I share but do not give. So, please just use this as a peek into my life and not as a guide into your own. Make your own decisions! Listen to your doctors! Read! Keep updated! Join a support group – of which there were almost none till very recently! But don’t ever stop trying to understand this on your own, personal, terms. Understanding it, and knowing the most you can know about FH and about your own body and keeping up with the ever changing science is power. Tap into that and you will survive.
Wednesday, May 18, 2011
The Diet
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!
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!
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.
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