News

In the news this week is this research/ study/ rumor of a new drug. I have come across it thanks to the FH Facebook group I follow. Good read, and interesting findings: http://www.reuters.com/article/2011/08/26/us-cholesterol-idUSTRE77P53O20110826 .

Also, of some interest is this chart attached to the story - pretty amazing for far ahead in Lipitor in drug sales, compared to the rest of the statin pack. No wonder a generic is not in sight yet - it's a goldmine!

Happy reading!

Because You Just Gotta Live Some, Too

One of the member of the Facebook FH group said the other week that she discovered recently she has FH and sometimes “she is just being a brat about it, complaining about the many tests she has to take” and all that jazz … I honestly cannot and would not blame her!

Some days I so wanna be a brat about it! I so wanna ask somebody, anybody, “why me” and “why this”?? But, at the same time, I feel so fortunate compared to other people who have afflictions so much worse than this!

As my sister says, “at least you won’t starve with this disease!”. Well, they want you to, but … I say: at least, you can move, and talk, and walk, and hold a job, and … Trust you me: it could be worse! Not that our lives are easier in this disease, but we’re, in a way, more lucky than others, I think.

So, when I wanna “feel like a brat about it”, I eat. I eat what I am not supposed to be eating. Usually “illegal” stuff, full of cholesterol! It doesn’t happen often or frequently, but it happens.

One morning, I woke up with a sick craving for eggs and bacon! And so, I made one scrambled egg, with turkey bacon and toast, and I tell you this – it was the most savored breakfast by anyone on record, minus all the small children in Somalia who would relish any kind of meal right about now, unfortunately.

My "decadent" breakfast

And it’s summertime! How can one possibly live without funnel cake?? What’s a State fair or any kind of outdoor fair without funnel cake?! I usually hate sweets, but I love funnel cake. And once a year, I allow myself to indulge! And, well, yeah … be a brat!

My funnel cake "fiesta"

But aside from these extravaganzas, I have been doing pretty well with my diet. Still on the same meds (Lipitor+zetia), same dosages, but I have been enjoying fresh produce from my own yard – who would have thought you can have a veggie garden in the desert, right?! But I have one!

So, I have been eating fresh tomatoes all summer, and squash and herbs, and pretty soon there will be the peppers … This is along with other healthy meals, with store bought ingredients, as well: like potato salads, and cucumbers, and cherries, and wheat pasta and oatmeal granola bars, and such ... Summer soups are yummy, with all veggies and some white meat chicken. So, overall, I still stay on track, but ... a once in a while slip won't kill me. I hope.

And just yesterday, I got my new numbers – which look good, I’d say:

- Total cholesterol: 274, from 285
- LDL: 227, from 230
- Triglycerides: 68 from 98 (yay!)
- But the ratio still looks bad: 8.1 (normal up to 3.1) - :-(

I am happy, however – no apheresis, after all! Trying to work on the high BP, as well - with more exercise and less wine and less caffeine, too! We're still very much working on that one!

But I cannot promise anyone that I am not going to be a brat about food some more. After all, we have to at least have the illusion that we still can enjoy life! At least every once in a while …

Drug Interactions

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.

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.

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 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!

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.