One of the hardest things to handle in dealing with the medical world is to the relativity of treatments and the un-sureness, evasiveness, almost wishy-washy-ness of medical professionals. Studies evolve all the time, and change the recommendations for some treatments sometimes drastically, overnight – so you never quite know what you need to be on and for how long and how will affect you, really. And no one knows. It’s a risky business.
I have decided a long time ago to have no regrets! I will do what the doctors tell me to do today, with the information they have at the time. And if the information they have now will prove incorrect after studies and many years of practice, well, then, we’ll stop what we’re doing and move on with whatever health we have left. I mean, what would be the alternative, and what would be the point of regrets?!
The alternative is to do nothing, of course. Take nothing. Use our judgment when we choose our lifestyle and hope for the best. I used to take nothing for years – and I felt not so good. Sure, there is no day in my life free of pain or discomfort now, too, but overall, I feel better, more functional, I can do more and that’s why I’ll take whatever drugs they have available for now.
Long intro, I know. My point in this piece was going to be about how un-sure and relative doctors and their helpers are when they are prescribing meds. So, my heart doctor just added a blood pressure medication to my treatment, because some days (key word is “some”, here), my blood pressure is high. OK! I knew this day is coming. With my heart problems and with everyone in my family (even the non-FH folks) with high blood pressure, it was almost a no brainer. Well, I am not sure what it is, but this new medication (Diovan) makes me dizzy, out of focus, and hot in my brain (for lack of a better medical word) right after I take it. I am not sure whether it’s the medication itself (those are some of the side effects), or the fact that I take a beta blocker (Atenolol) on top of it? Or because I take Atenolol+aspirin+Diovan at the same time? Or because I take aspirin, too, with all that? I have no clue.
A google search on the drug interactions of Diovan reveals (on drugs.com) that it interacts with both aspirin and Atenolol. As for the latter – the combo of Diovan+Beta blocker+ ACE inhibitor drug is fatal, and “the mechanism is unknown”. I am not on an ACE inhibitor drug, but made me wonder.
So, I call my doctor to ask: should I be taking all these 3 together? Should I be taking the whole 40 mg pill of Diovan on top of the 100 mg of Atenolol? Should I be taking an aspirin with everything? Should I take Diovan only in the second part of the day, since my BP usually goes up at night only?
I get a call form the doctor’s PA and she is full of “if”-s and “not sure”-s. She usually is, but this is somewhat important, I am thinking – playing with my heart (literally), not to mention my liver and what goes through it!
They prescribe this triple combo to people ALL the time and they have no issues, she says. They have never seen Diovan react with ANY drug (go to drugs.com or any other site that provides this and see the list of interactions). I should take it at noon, since the BP is high at night, OR I should take half of it in the morning and half at night OR I should take it ONLY when I take my BP and it’s high – and that also means “not every day”, if my BP is not high every day. Again: which is it?!
I mention to her that it says on the bottle and in the drug’s description online that I can’t skip dosages and I have to take it daily almost at the same exact time every day – and not on and off. She concludes: “Umm… no – that’s not true”.
So, who do you trust? What do you read? Who is the authority here? My mom has a good friend that’s a pharmacist and she told me years ago she argues with doctors all the time about how meds work and react and the doctors just won’t listen. She said it’s all about the chemistry – the chemistry you put in the drugs and the chemistry in your body and how they react with each other. Doctors have a good knowledge of the anatomy of the body but chemistry – not so much, not always, it seems. So, she sees them prescribe random stuff all the time. I am not saying my doctor did, but I surely wish I knew more about why I feel like walking on a cloud half an hour after I take this thing and for about 2 hours after that.
Anyway, I am not convinced at all that this is what I should be taking, if anything for my “randomly high” BP. I am not sure what I’ll do next, but a couple of days’ break from it might clear my head. Literally.
"In the end, when we look at our life, the questions will be simple: Did I live fully? Did I love well?"
(Jack Kornfield)
"The proper function of a man is to live, not to exist." (Jack London)
Wednesday, July 20, 2011
Tuesday, July 12, 2011
The Yo-yo Blood Pressure and More Drugs
I went to see my cardiologist about a month ago. When they took my routine blood pressure at the office , it was something like 158 over 95. So, he was all alerted. I have had “occasional” high blood pressure before, but nothing consistent.
I can’t remember what I took once, years ago for it, but because the numbers are so inconsistent, whatever they put me on then took my blood pressure way too low on days when it was normal, giving me a feeling of faint-ness, fatigue, dizziness that was bothersome.
As you know, blood pressure medicine is an “all or nothing” deal. You can’t just take them “when you have symptoms”. You take them for the rest of your days. So, they decided, then, years ago, to just increase my Atenolol, which I was already taking, in hope that that will help my BP, too.
And my BP has been mostly normal, but there are some days when … well, it shoots to 158 over 95. So, the current cardiologist asked me to keep a blood pressure diary for a month and come back for a decision… These are some of the numbers I took last month: 134x66, 140x60, 156x72, 120x80, 177x81, 107x54, 131x67. I can’t think of a rhyme or a reason why these up-and-downs are happening, but they do. Usually, as an average, I’d say it’s somewhere between 135-140 over 65-85, thereabouts.
So, the verdict was … more drugs. He added Diovan to Atenolol. It’s “just” a 40 mg dose, for now, which he is pretty sure won’t bring the blood pressure too low on days it’s normal, but it will help with bringing it low enough on the days when it’s high. We shall see. My pharmacy doesn’t have it, so I am waiting for a couple of days to be ordered in. I will report on the progress or happenings as they happen, of course. Surely, the doc said I “should not notice many side effects”, but I know better!
Now, I have to keep yet another BP diary for another month to 6 weeks while getting used to this new drug, and then go back in. I see my doctors more than I see my parents, and that becomes sort of ironic (not to mention WAY too much!) some days.
I have also started taking the 50,000 UI Vitamin D (once a week) yesterday. As I mentioned before, I have already been on 800 UI a day of Vitamin D because I have a deficiency (but who doesn’t, right?!), but now, my D numbers are way lower than half of what’s allowed, so … I am on this horse pill dosage.
Because D increases the amount of Calcium your blood vessels absorb and deposit, I have stopped taking my daily Calcium for now, while on this high dose of the vitamin.
Monday, June 20, 2011
Good/ Bad Cholesterol - An Article Link
I found this article written by Dr. Dean Ornish interesting: http://www.huffingtonpost.com/dr-dean-ornish/cholesterol-the-good-the-_b_870655.html.
My HDL is always going lower, if the drugs I take make a difference in my numbers. That's because if they work, they work on all the fractions of cholesterol, and not only on the "bad" one.
And most doctors tell me that it's not good that my HDL (the "good" cholesterol) is also decreasing ... But I have always wondered - as you can see from the article (and as you probably knew), the role of the HDL is to take more bad cholesterol to the liver where it gets processed and flushed out. But my very problem is ... my liver doesn't know what to do with cholesterol! It can have it there all day long, it doesn't know how to process it! That's why it needs the statin drugs. At least that's what I have been told ... So, the increase of HDL would not help much in my case ...
Anyway - I enjoyed the article, especially the part that says " it’s important to look at arteries, not just risk factors" - that's why I feel sorta good at the end of the day knowing that yes, I have high cholesterol still, and yes I have deposits, and yes, I have blockages all over my body, but they have been pretty stationary for the past ... 6 years, from what one can tell in an ultrasound of any sorts.
Just a small silver lining...
My HDL is always going lower, if the drugs I take make a difference in my numbers. That's because if they work, they work on all the fractions of cholesterol, and not only on the "bad" one.
And most doctors tell me that it's not good that my HDL (the "good" cholesterol) is also decreasing ... But I have always wondered - as you can see from the article (and as you probably knew), the role of the HDL is to take more bad cholesterol to the liver where it gets processed and flushed out. But my very problem is ... my liver doesn't know what to do with cholesterol! It can have it there all day long, it doesn't know how to process it! That's why it needs the statin drugs. At least that's what I have been told ... So, the increase of HDL would not help much in my case ...
Anyway - I enjoyed the article, especially the part that says " it’s important to look at arteries, not just risk factors" - that's why I feel sorta good at the end of the day knowing that yes, I have high cholesterol still, and yes I have deposits, and yes, I have blockages all over my body, but they have been pretty stationary for the past ... 6 years, from what one can tell in an ultrasound of any sorts.
Just a small silver lining...
Monday, June 13, 2011
My New Best Friend
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!
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!
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!
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