And Here We Go Again

Another day, another (early) appointment. Waking up early, showering, fasting, packing up breakfast for work, and meeting my doctor for my 6 month appointment. The usual. I usually schedule these appointments first thing in the morning, and I fast, even if they don’t tell me specifically to do it, because they almost always realize they missed a test and they need to poke again. And I’d rather do the test then and there, rather than come back another day, and miss some more odd hours from work.

They did my blood tests about 3 weeks ago (the every 3 month routine for that), and this was the follow-up of that, as well. The doctor was disappointed as all my cholesterols went up; the total went from 274 to 304. I assured her I am eating even healthier than before, so I am not sure what the deal is. Truth is, I am eating healthier, since my husband was diagnosed with diabetes, and overall, I think I am under less stress than earlier in the year. And yet, the numbers are up. True, I am not walking or hiking nearly as much as I did last summer, but still: 30 points is a significant jump, even for me! The blood pressure has been doing some insane things lately (like when it dropped to 60 over 40 during my stress test a couple of weeks ago).

The doctor was sort of blasé: she said: “Well, with you, you eat right, you take the pills and you pray for the best. But you never know what you’re gonna get!”. Isn’t she ever so right.

She is not going to add anything else to the drugs for now. Due to the fact that there is a laundry list of other symptoms completely unrelated to cholesterol that might be pointing to some hormonal dysfunctions, she is doing a thyroid test (I told you: more blood tests) today, and she is referring me to some specialists. She needs to rule out any hormonal changes and endocrinology-related malfunctions before she can attack the cholesterol with more drugs. She thinks that since cholesterol is a metabolism disease and metabolism is usually so influenced by glands and their well-being, she wants to check these out next, given my most recent symptoms.

Now, I am waiting on my thyroid test, which should be done tomorrow, but I am not sure when they will call me with it. After I hear the results from that one I will make the first appointment with the first specialist.

My next blood tests for cholesterol and liver functions are due in 3 more months, again. Yippee…

The complete panel:

Total cholesterol: 304 (from 274)
HDL cholesterol: 37 (from 34)
LDL Cholesterol: 248 (from 227)
Triglycerides: 96 (from 68)

The last tests were in August. I have to believe that the summer diet, of all fresh herbs and veggies, as well as regular walks weekly, as opposed to the semi-sedentary life of the winter has something to do with it. But all the other changes in my body have gotten me worried, so an extra check elsewhere should not hurt, I s’ppose.

Another new thing from the doc's office is that I got my first ever prescription for GENERIC lipitor! I have no idea how much this one is, with my insurance, but I will let you know. I have been on lipitor for 10 years or more and it's been always treated by all insurances as a non-preferred drug. I am dying to see what the generic lipitor is to my insurance.

Hoping for good news for all, till next time …

The Glow in the Dark Test

(well, sort of ...)

I tell you what – they’re going to either stress me out completely or totally distress me doing so many stress(ful) tests on me this year!

The first one I had earlier was just a “regular” stress test – for the very first time! Usually, they have done just the “nuclear” one in the past. This year, the new doc decided to go with the “regular” one first, and then decided that it was not very conclusive, so he ordered a nuclear one, to follow, as well. More trouble for me, more money for them – is how I look at it.

Although I have done the nuclear one at least twice if not three times at my old doctor’s office, in NC, I discovered that this one, another state, another clinic, was slightly different than before. I am still not nervous about it, except for the IV, which I hate, but I was surprised about some things that I was not familiar with, really.

First, they refer to it as the “thallium test”, not the “nuclear one”. So, I am not quite sure whether the substance they inject you with, the one that glows in the pictures, is the same as before. The sensation of cold, when the “poison” goes into your body is the same, however.

The nurse also asked me if I am going to travel by plane in the next week or so. I told her no, but I also asked her why she’s asking – this was the first time I was asked this. She said it’s because thallium will stay in my body for that long and I can set off a security metal detector at the airport because of it. My eyes must have popped out of my head, because she continued: “Oh, no, don’t worry. It is not harmful to anyone around you, nor the environment, so it’s OK!”. This time, I could not stand it, and blurted out: “Harmful to the ENVIRONMENT?? Or OTHER people?! What about to MYSELF? I am a walking, rusting (no doubt!) robot for a week but this is not harmful to ME?!”. She laughed it off and said no, but … are you really convinced?! I am not, and I am not usually paranoid about what might kill me. Just sounds a bit strange!

So, the drill with this test is: you go in preferably early in the morning, definitely fasting. They hook you up to an IV and you wait for about 40 minutes in the waiting room, till the thallium gets through your whole body, I guess. Then, they put you on a table, to take pictures of your heart. You wear a gown for your upper body but you can be dressed in your own clothes from the waist down.

After the pictures, you wait for another 40 minutes or so, not sure why. Then, they ask you to come in the treadmill room. You walk on the treadmill, with them increasing the speed every 3 minutes and the incline, as well. You have to keep going till you reach your required heartbeat rate for your age – mine is 156. At about 146 I thought I was going to choke! But I reached my peak, nonetheless.

My chest never did become heavy, but my throat always chokes up when I am running, like someone is literally strangling me. My throat just becomes very, very narrow, all of a sudden.

While you are running, a different nurse injects more thallium in your IV.

Towards the end of the exercise, they lowered this old fashioned X-ray machine and made me put my chest right up against it WHILE I was running, with an IV in my arm, and stickies with wires stuck all over my upper body, to measure my blood pressure and what not. This was, once again, something new to me. I am not sure what the X-ray machine measures, but I honestly don’t see how 90 year olds do this.

After I reached the heart speed they wanted, they slowed down the treadmill and I was walking normally after that, in a stroll pace. When I stepped down from the treadmill, I was extremely light headed. My blood pressure went during the exercise from 120 over 60 to 147 over 98, and then, within minutes, down to 60 over 40! No idea why!

The nurse shot about 4-5 syringes of saline into my IV and I started to come to. I also drank a lot of water. She did not release me from the room till she got a “normal” blood pressure and the headache and lightheadedness subsided.

After this, I went to the waiting room for another 40 minute wait, and this time, I ate a breakfast bar – as I was told that the fasting part of the test was over.

After another 40 minutes, I went back to the room with the machine that takes the heart pictures. For the pictures, you lie down on a very narrow wooden (I think) table, with your arms folded under your head. You are told to not move whatsoever, even if it is just to clear your throat. The pictures will be blurry otherwise and they will have to start over. You lay there for about 15 minutes while this massive moving metal machine goes around your chest from right to left and shoots pictures of your chest. The pictures show up on a computer screen somewhere, in the room, but the machine blocks your view, so you’re not seeing anything. The machine is not touching you, and although it is terribly close, you don’t panic, like in the MRI tube, from claustrophobia. Not the same feeling at all.

And after the second set of pictures you are done!

After a week or so, I got a call form my cardiologist’s nurse and she told me that the test was fine and that my heart can withstand exercise, so I should continue exercising as much as I can, and come back for another regular checkup in 6 more months.

Mystery solved – and now I am happy that this is behind me, too!

It’s not too bad of a test, and if it is indeed accurate about spotting blockages and their severity is pretty harmless and noninvasive to be worth while in knowing what you’re dealing with. The biggest inconveniences are that it takes about half of your day (and time off from work, etc) and the IV is not very pleasant. And I almost forgot: they sand down (yes, as in sandpaper!) the spots on your torso where they stick the sensors for the EKG wires. They use a small piece of sandpaper to make sure no oil or other residue is under that sensor. When you peel them off, you will lose some skin!

Aside from that, and considering that a regular dental cleaning is more bloody and messy than all this, this is pretty tame. Just don’t get thrown out of a flight for transporting liquid thallium in you! Plan your test a couple of weeks in advance of your flying trips, I’d say, and good luck with the results!

This and That

Not much happening on the medical front lately. I have a thallium stress test scheduled for this Friday, and another doctor appointment in a week with my general doc, to follow up on the most recent labs and on the stress test. So, we shall see.

In the meantime, we have found out that my mom (not my dad who has been the designated “gifter” of the cholesterol and heart disease in my family) has been diagnosed with heart disease, high cholesterol and triglycerides, and cardiac insufficiency, whatever that might mean. She is still to undergo more tests, but basically – it’s all bad. Since her mom died of hear disease as well, I gotta wonder - did it really come all from dad, or … both?! It doesn’t really matter, of course, but just wondering. Plus, given her history, with her mom, this makes me very worried for her!

In the spirit of “I am sick of all this being sick, I’ll do something about it NOW”, I am determined to improve my exercise regimen, even if it’s the last thing I do! I am so saddened when I realize every day that I am a lard butt and do little to get my heart rate going! So, my priceless husband has bought a treadmill for me for Christmas, and I am determined to use it! Effectively and regularly! I live in a part of the world where winter is long and cold! I have no excuse now not to walk! I have a basement and although not finished, it’s never really too cold down there! I want to move. I want the rust to peel off my joints and arteries, and I want to be able to breath normal when I climb up one flight of stairs! I am determined! I will try to keep sort of a journal here, or somewhere to keep me motivated! But I – need – to – move!! Big time!

An interesting piece of news today was this article: http://yourlife.usatoday.com/health/medical/coldflu/story/2011-12-14/Study-Statins-reduce-flu-death-risk-by-half/51914122/1. I knew they called them “miracle drugs” but I didn’t know they did everything! Also, all the doctors I have ever seen have ambushed me into a flu shot – and I have always managed to say “no, thank you” and gotten away with not having one – heart disease and all. And, thank God, I never get the flu! Sure, an occasional sneezy cold here and there, but almost never ever the flu! Of course, not sure whether the Lipitor does anything to it, but thought the article to be interesting, nonetheless.

Hope everyone is well and healthy and with ALL the numbers in check!

Trying out the new treadmill this weekend - my husband couldn't help it and snapped a picture with my phone. It shall be used. I promise you! The treadmill, not the phone, that is. :-)

Holiday Eats

I think you don’t have to be a genius to know that this is the hardest time of the year for keeping a healthy diet! Of course, when you try to eat low fat and no oils nor saturated fats, and low sugar is doubly hard, but generally speaking, the time between Thanksgiving and New Year’s is terror to our arteries and hearts for all of us!

Typically, all during the year, I try to eat just white meat poultry and fish, always. Around this time of the year, however, the options are turkey, duck and ham! I used to buy small Cornish hens (which are actually not that low in fat, really) for Thanksgiving, when I was single, but now, it’s turkey, all the way.

And then, there is the ham! My favorite meat in the whole world, but of which I eat only twice a year – for Easter and Christmas – and maybe New Years, too. Then, all the fixings. If I cook myself, I try to make wise choices: Smart Balance instead of butter, turkey bacon if I want to cook with bacon, 2% milk, fat free shredded cheese for chowders, and the likes. When I do have a choice, I try to be careful what I chose, and use plenty of spices and herbs, to not skimp on the flavor.

In the mornings, and when eating normal meals, not over visits with friends, I stick to my healthy meals – lots of fiber and some greens. Being Eastern Orthodox, I have a “good excuse” to not eat animal products twice a week, from about 6 weeks before, until Christmas, too – so this helps to keep me “in line”, as well. I have kept this tradition since I was a child, mostly for health reasons, and secondly for religious ones.

My husband loves to bake, but lately, he’s been using half the amount of sugar a recipe needs, he replaces butter with vegetable margarine, or Smart Balance, and he makes mostly oatmeal cookies lately – yum! He has also used flaxseed and wheat flours, too.

When I visit other folks, my focus is on portion size, since I have no control over what goes in the dish. I can’t have 15 pieces of ham, no matter how much I love it. And I try to go for the greens – green beans, salads, and no casseroles, if I can, as I am sure everyone uses the “real deal” ingredients in everything else.

We went to our first Christmas party this weekend, and I had a sautéed chicken breast, with mashed potatoes and a spinach salad. I had literally two bites of my husband’s cheesecake, and water to drink. I was full, and never felt like I was missing out. I am somewhat lucky, too, to not care for red meat nor sweets much – so the choices were easier. I also try to focus on the atmosphere and the experience of getting together and celebrating the old year, more than making it about the food.

Just like when I travel, I try not to obsess over the foods on a time like The Holidays. I try to enjoy the moment and tell myself that I can be careful without making my choices the center of my life. In fact, most people that don’t know me very, very well, have no idea I watch what I eat. I always get the “why are YOU dieting? You’re nothing but a little bit!” spiel, and I dread going into details – out of lack of patience more than anything.

But if I go tomorrow, in a middle of a heart attack, I tell you this much: I would regret not having that ham more than I would be proud of myself for always sticking to carrots and cold water fish! There is a time for everything, and at Holidays time, it’s time to enjoy what the table has to offer, but only remember to keep size in check.

Happy Holiday Season to all, and happy eating, too!

A Year of Un-health

It is health that is real wealth and not pieces of gold and silver. (Mohandas Gandhi)

This year has not been a really good one for health in our family. Just one thing after another. It’s not just one member of the family, not just mine or my husband’s family, it’s everyone, it seems. Almost.

The year started with my sister almost giving birth to her second baby 2-3 months before her due date – again! She was on bed rest (and hated it) for two and a half months and in and out of the hospital till she gave birth to her healthy baby boy in February. That was such a wonderful gift to all of us, this little man!

My grandmother, who is my only living grandparent, at 82, has been in a clinic for senile dementia for over a year now, and this year, she has been getting worse. We never really knew this disease is in our family, because I guess back when her parents were suffering from it, they called it “old age”. She has always been the healthiest in my family, physically, a 4’9” (if that) dynamo, so this came as a big shock to all of us. My family could no longer care for her at home, because of her nightly wanderings, which were very hard to supervise, so she had to go to this special place.

Her physical health is declining rapidly, along with her fading mind. It is so unbearable to watch. And to watch those who care for her (like my aunt) fall into depression themselves, as the care giver is equally impossible, at times.

My husband’s aunt has been diagnosed with colon and uterine cancer, at 72. She has undergone a massive surgery to remove most of her colon and all of her reproductive organs, sometimes in the summer (June?!). That, alone, is massive surgery for anyone, at any age, but particularly for an older body. After the surgery, she underwent several (I think five) rounds of chemo, just “preventively”, we are told. During this whole time she has been in the hospital twice with massive abdominal infections, various cysts, just complications of this whole intervention. We saw her last month, a year and a half after we saw her at our wedding, last year, and she was almost the shadow of the woman I remember. Her eyes had the same glitter in them, and her smile the same welcoming warmth. Disease can take a lot out of us, but it cannot and should not kill our spirit.

Around the same time his aunt was diagnosed with cancer, my husband was diagnosed with type 2 diabetes! He jumped on the wagon of medication, constant blood sugar checks, new diet, several doctors’ appointments, reviews at the Diabetes Management Center, and re-designing his eating and exercising habits. It was a tough blow for him (already a high blood pressure patient), although he was kind of expecting it, since it’s a “family disease” on his side. It’s never easy to hear such confirmation, though.

My brother in law, at 32, just found out that his cholesterol and blood pressure are off the charts, too and whereas his blood sugar is not scary yet, his A1c test showed clear disposition to type 2 diabetes, as well. My sister and I are exchanging diabetes and heart disease friendly recipes now. Another big, unwelcomed “surprise”, of two very traumatic diseases, for someone so young!

Lastly, but not in the least, there is my mother in law. She is a double amputee, having lost both of her arms in a farming accident when she was 4. She is 70 now and has lived all her life with prosthetic arms, doing everything we are doing as “normal” people. She is my role model of strength and perseverance despite all odds! She is a walking lesson.

She is also a diabetic. In the past year or so she has lost a lot, and I mean a lot, of weight, trying to keep her diabetes under control. She walks 3-4 miles every day from spring to fall (she lives in Michigan, so winter walks are tricky to say the least, but she does walk on the treadmill then), and she has totally revamped what she eats. After 69 years one can still change what and how they eat, and how they manage their exercise routine! She is living proof of that! But all these changes caused her to lose so much weight (while her blood sugar is back to normal values!) that she has needed new prosthetic arms. The old ones are too large now, and she can’t work them too well anymore. Well, after months of waiting and close to $12,000 paid, she got arms that are made completely wrong for her! Totally unusable. The arms, much like ours that we take for granted, are her freedom. The old ones are cumbersome and hurt a lot, since they don’t fit her “stumps”, and she needs new ones. After months of explaining to the makers of them what is wrong with them, she gave up and she is back to her old ones, in pain, but still free.

And then, there have been my own issues. On top of everything else I knew about, on top of the perpetual “flunk” tests and off numbers (the usual), I also found out about my defective heart (not because of cholesterol, alas, this time, but just because of pure faulty genetic anatomy), and about uterine fibroids that are a pain (pun not intended) to live with, every day!

Despite everything, though, I still consider myself lucky. Looking at all my relatives who have crossed large abysses this year in their fear for their (or their baby’s) life, I feel lucky that whatever I have been “blessed” with has not landed me one day in a hospital, or one hour disabled!

I am grateful for what I have and I am learning, every day, from these wonderful people around me, how one can survive a bad diagnosis, no matter how horrible, and still go on. One foot in front of the other, one day at a time, one prayer and “thank you” at a time, we will continue to walk on. There is no other possible alternative.

Stressed About the Stress Test

(no, not really ...)

And here we are again. You know, I think I need to visit more often and just tell you all about my normal days, not only about days when I visit “that” place. You know, the place where they wear scrubs. I need to tell people that we, people with FH, do have a life, a real one that doesn’t involve tests and drugs and IV’s and all … I think I’ll make that pledge now, and if I bore you to tears with my other, “normal” life, shout out, and I’ll change the tune …

But anyway, today was one of “those” days. The PA that I saw a couple of weeks ago, or so, asked that I repeat the heart eco they did last year, just to check on this leaking valve and its progress. Since last year was the first time they found it, they used that as the baseline and they need to understand how fast it’s getting worse, because, as they “promised” me, it will get worse. So, they needed to repeat that this year – if the progress (or regress) is slow, then, they’ll do this every two years or even further apart. They also wanted to repeat the stress test, which I normally get done every two years, and it was time for that.

Every time I go in for these things I am thinking: “someone has an ex-wife they need to pay off or a boat payment that’s due”. But let’s not be cynical, shall we, I am sure this is all helpful, and I am grateful for health insurance.

I am not going to find out the eco results till some time later since they need to be read by the radiology doctor and then sent to my cardiologist – both in the same clinic though – I have an appointment next week for that. The stress test, however, was performed by my heart doctor’s PA (the one who said no to Diovan), so she read it to me today.

She said “I flunk it”! Everything was fine, till I got my heart rate at around 152 and I started choking up. My chest was heavy, not so much painful, but heavy and I was out of breath, and my neck was clutching on me. I felt like there was no air going through from my nose to my lungs. I had to get my heart rate to 166, according to the literature she had there, so she would not stop the treadmill till I reached that … I was exhausted and completely out of breath by the time I was done. The discomfort in my chest was about a six on a scale from 1 to 10, I’d say. Like I said, it was not pain, or pressure, but more like a tightness. And a massive, out of control, blinding migraine, too!

She read the paper that comes out of the machine and she also said it doesn’t look good, because my heart doesn’t come back “to baseline” when I exercise. It tries, but it doesn’t make it back to the same spot it was a beat earlier.

She called in the doctor, and he said I need to have (you guessed it!) yet another test: a thallium (nuclear) stress test which will show him more precisely what is going on inside of my heart – is it a blockage and where, or is it my valve that’s causing the pain/ discomfort?! In NC, I had this done twice. Given my history, my doctor there felt like a “simple” (non-nuclear/ non-thallium) test, the kind I had done today, would not tell him much, so he always went for the more “advanced” once. I guess the doctor here is still learning?!

Anyway, another test we schedule. And if that one comes out all inconclusive or bad, then we go in again for an angiogram. Fun-fun!

I have felt OK lately, heart-wise, although my pulse is very accelerated. I am going to switch to decaf in the morning for a while and see if that helps. My headaches is what has driven me crazy lately, though: they have been more severe than usual and almost constant, with no break between days. It’s been kind of a pain (pun intended).

I am seriously thinking I must re-start yoga again, too – I must seriously get in the habit of that, again, with no more excuses! I feel rusty … We walk some, but not consistently, which is a shame. I would not call myself a real couch potato though, because between cleaning two levels of a house twice a week and cooking every night and running errands at lunch and sitting down at 8.30 PM every night for the day, I am moving a lot. But I need more! More consistency and a regimen! Looking for a treadmill for this winter! Cannot wait!! And the fact that we enter comfort food season is not very helpful, health-wise, either. Must work extra hard to compensate.

No Go for Diovan

If you remember back in July, my heart doctor put me on Diovan once a day. He said a small dose of 40 mg would not cause any trouble for my yo-yo BP. Well, I tried it, as I mentioned before, and when my BP was normal (which is most of the time), it would bring it even more down, and I would feel lethargic, light headed and in a fog for a couple of hours.

As you also may remember, I called the PA and she was not sure what to try, but gave me a whole spectrum of choices: take ½ instead of a full one; take it at night, when the BP is higher, take it ONLY when I measure the blood pressure and I know for sure that it’s high… etc. After reading more online, and considering her “recommendations” as very volatile – I decided to stop taking it unless my BP is so high that it scares me.

That is – in case I measure it and I know it’s high. I measure it several times a week, but not every day. And occasionally, it’ll be high, like in the 150’s (for the systolic value), and I’d take ½ of a pill – usually at night. I have only one account of when I took ½ a pill and I measured the blood pressure after several hours, and it had come down to 110 over 60 from 150 over 95, I believe. So, it works! But how are you supposed to keep measuring it twice a day, every day, and walk around with your pressure meter and your pills, and your notepad, and have a life on top of that?!

Sure, I don’t recommend anything to anyone. But for me, I decided I’m not going to be paranoid about it. I’ll take ½ of a pill only if it’s high. It still makes me uncomfortable to take BP meds randomly, but I’d rather do that than take them all the time, add more chemicals to my cocktail, and feel like crap, when my blood pressure is too low!

My blood pressure has been better, because I have been more active than I normally am in the winter, and also because I have tried to keep the wine consumption low at night, when the BP was rising. So far, so good on the numbers.

Other than the (very!) occasional Diovan (maybe 2-3 times a month), the only thing added was the 50,000 IU Vitamin D which apparently did the trick for my D levels. No side effects that I can see there. I have stopped, however, the calcium I was taking as in many reports online you are advised against taking it while on high dosages of D, especially when you have a history of hardened arteries and plaque deposits. The doctor never recommended for or against the calcium – this is, again, my own decision, if you will.

But after all, it is our own life, isn’t it?!

Study: Stents for the Brain

Because there is virtually no history of heart attacks in my FH family, but there are tons of examples of stroke, of all sorts of severity levels, I found this article interesting:

http://www.nytimes.com/2011/09/08/health/research/08stent.html?_r=1&emc=tnt&tntemail1=y

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.

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.

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!

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.