And Now We Wait ...

I am sure that  the title could repeat itself 100 times in the days to come. After a diagnosis comes, there are long days of waiting, for insurance approvals, medical opinions to factor in, planning on the patient's part - and waiting and planning are, really, a luxury! Some people don't have that choice. Especially, with heart disease, most people get rushed in and under the knife to stay alive. So, this is really, just good. 

We repeated the echo-cardiogram on Christmas Eve, and the readings are right: my aortic velocity is 4.86 m/s (it's normal lower than 2.5 m/s - see this article for values), and the aortic opening is 0.5 cm square. So, all measurements point to one thing only: severe aortic stenosis which requires the aortic valve to be replaced. I guess I could cheat fate for only 40 years before I succumb to heart surgery. I will try my darnest not to "succumb", however, but to come out of it stronger and better. 

Right now, I made an appointment just with my cardiologist, to understand better of how soon we need to do something about this, and possibly to understand what kind of valve it's fitting for me to get. He will also recommend the heart surgeon on that appointment. 

I am a conundrum of questions and doubts, as there are no clear "winning" options for a stress free and doctor free and worry free valve: if we go with a tissue (animal or human) valve, it will require re-operation withinin 10-15 years, if we go with a mechanical (artificial) valve, it will require coumadin daily, which has a ton of side effects and many other health concerns because of heavy bleeding. Not something to take lightly. I am reading and researching all I can, but will know more on the 5th, when the next appointment is. I hope.

It's been a blessing to have some time off during the holidays, just to spend it with my husband and to really wrap our heads around this, but it's also given me much time to worry about things too - which is, of course, premature. 

I hope you all walk into the new year healthy, happy and if not, at least with a heart full of hope that miracles are possible! 

Happy 2016 to all! 

Back in the Roller Coaster

I have been meaning to post an update on my numbers but I keep waiting for more results to come, so I can make a complete post. But, this FH life is sometimes just a string of waiting moments; waiting for the results to come, and for the other shoe to drop, to know what the next step is to take. 

In the beginning of this month, I went in for my routine lipid and liver levels blood tests. The liver was fine, and the lipid levels were actually lower than in July - below - which is always a plus. The only thing I did differently is adding back the zetia to my drug cocktail. My new cardiologist seems to believe this definitely will help with the numbers. 

 

As you know, any improvement is a great thing in this world, so I was grateful for this. The happiness was short lived, however, as my annual echocardiogram was due also - where they are monitoring the regress of my stenotic aortic valve. The results from this test just came out this week and it's not looking good. There is a sudden drop in the area of the valve (from 1.1 cm2 to 0.5 cm2) and a sudden increase of the velocity of the blood through it (from 3.5 m/s to 4.86 m/s) - which my doctor considers to be "a huge jump". My angina symptoms are not worsened, however, and that's the only saving grace at this point. 

Usually, any aortic area less than 0.9 cm2 is considered dangerous and it begs for open heart surgery to replace the leaking/ broken valve. An idea which  I have been "playing with" for the past couple of days. It's living me speechless and numb at this point. 

I called for a repeat of the test, which the doctor was onboard with, so this is to be done tomorrow. And then, we wait and try to make a decision. 

Surely, not what I had in mind for food-for-thought material for Christmas and open hear surgery was definitely not on the menu for the new year. I'll try to stay positive, but it's hard, as the numbers and the statistics you read are pretty telling and grim. And, alas, there is no more "alternative" way around this - no more diets, meds, or lifestyle changes that can fix a broken valve. 

I hope everyone's load is light this Holiday season and into the new year! Be grateful for today. 

Crock Pot Goodness

I have been thinking about making something in the crock pot, as the season for it has come. I have never done anything without meat in it, so it took a while for me to wrap my head around what exactly would go well in there. The thing about it is - not all veggies are alike, and some of them are more tender than others. Some cook faster than others, so it was hard to come up with a recipe for a while now. 

So today, bed ridden with a cold and hacking up a lung, I just threw everything my weary imagination came up with into the thing and made some soup. Here's the recipe, if you want to try it - it came out pretty delicious:

Kale (mine was blanched and frozen)
Two cans of Northern beans, not drained
Baby carrots
Baby fingerling potatoes
Cherry tomatoes
Sweet potato and garden burgers, minced in the food processor, cooked with chopped onions - to add towards the last hour of cooking. 
Garlic powder, salt and pepper. 

It cooked for about 4 hours and the soup was bursting with flavor. I think in the crock pot the flavor lasts longer than in the regular pot, because there is less evaporation, and the ingredients preserve their shape and texture longer, as they cook. It was delicious! Just what the doctor ordered for this sick chest of mine. 

You want to make sure the onions are really soft and cooked through before putting them in the pot. Cooking onions or garlic in the crock pot makes the whole thing taste very metal-like, for some reason. I learned that the hard way, trust me! 

An Accidental Weekend, Some Cravings and a Leftover Aside

I sometimes worry I won't be able to find anything to eat when I go out, especially with company. You always have to "explain" yourself (because they ask, not because you volunteer) and you can hear the eye rolls as you go over the way you eat. But you know what?! Even in Godforsaken Utah, things are much, much easier anymore. And plus, you need to stay a little bit creative, too ...

I had a "team activity" at work on Friday, where they took us out to get cooking lessons. The way it works: we cook the food, after some instructions from a chef, and then, we eat it. On the menu?! A full menu called "Mediterranean madness": chicken kebabs, tabbouleh salad, tzatziki sauce, pita bread and baklava. I cooked the tabbouleh and the rest of my team cooked various other dishes, and then we all shared what we cooked.  I had a pita bread stuffed with tabbouleh and that was more than plenty.

What goes into tabbouleh: bulgur (a grain), tomatoes, cucumbers, parsley, green onions, lemon juice, a bit of olive oil. The pita bread was made from wheat flour, and no dairy, eggs or soy products. I definitely recommend the wheat flour over the regular white for the pita, because the nuttiness of the wheat gives extra flavor to your dish.

Tabbouleh salad stuffed pita bread.

On Saturday, my husband and I went to one of the local chain sandwich places, one of those joints that makes a big deal out of using all organic and local ingredients. I was still a little nervous that something might be contaminated by some food that might make me sick, break out, and feel guilty about what I am eating (because of the fats). I ordered a minestrone soup, which was loaded with mushrooms, oddly enough, and it was delicious. In Italian tradition, though, it did have a bit too much olive oil floating on the top, though.

Then, I ordered the hummus plate, which was plenty delicious! I did not eat all of the pita, as it, too, had some extra fat I could taste. What can you do?! You win some, you lose some, right?!     
                                            

Hummus plate and minestrone soup at Blue Lemon

 
For Sunday, I was craving two things (I guess, continuing with my Mediterranean theme from Friday): pasta and baba ghanoush. So, I roasted an eggplant in the oven, and after draining it, I threw it in the food processor with some white onions, salt, pepper and just a teaspoon and a half of vegan mayo (Earth Balance brand, which I can only find at Whole Foods around here), and made this delicious spread. My husband had made some vegan bread, and the combo between the smoky eggplant and the fresh bread was amazingly tasty. Just what the craving asked for!

Baba ghanoush and fresh home made bread

 
For the pasta, I made a creamy tomato sauce, using rice milk, fresh cherry heirloom tomatoes and lots of garlic, fresh parsley, onion and dill, simmered on low for about an hour. I mixed the sauce with the cooked rotinis, fresh sweet peppers and frozen sweet peas and threw everything in the oven for about an hour. That was our dinner. 

                                  
                                    Baked pasta, veggies and creamy tomato sauce 
 
One little "leftover" note I forgot to blog about: we had lots of leftovers from our Thanksgiving dinner. And I usually love to re-invent the leftovers into some other dish, so we won't eat the same ol', same ol' dish all over again. My favorite re-invention this year was also the easiest one to make and so delicious: with the leftover mashed potatoes, I dumped some canned mushrooms into a Pyrex dish with the potatoes, mixed in some vegan cheddar cheese and lots of crushed garlic, and put it in the oven for the mixture to "get happy" for about 45 minutes. I just ate it with home made bread, just for extra comfort starchiness. 

 

Mashed potatoes and mushrooms casserole

Thanksgiving

I never understood why people panic so incredibly about cooking Thanksgiving. I mean, sure, there are people out there who cook nothing more than toast all year round, but those are not typically people who will throw a Thanksgiving dinner party for 20. Typically. I always cook the meal, even when sometimes I go to other people's houses. There is something about making the house smell good to kick off December that appeals to me. And I panic just about as much as getting up every morning. Sure, you don't know what you're going to get, but you know it'll be worth the work.

This year has been the first one when I did not have any turkey to eat myself, although I made it for my husband. I just ate the side dishes and the pie at the end, and they were all vegan and delicious. I thought I'd share it here, just for some ideas for folks who still look for veggie friendly and low fat meals. Everything took about 5 hours to make, including the turkey.

Here's our Thanksgiving in pictures:


We kicked off the day with a semi-large breakfast: smoked salmon (some fish is the only meat I eat lately) over hashbrowns with mustard and a vegan home made biscuit - Bobby Flay was right: the combination of salty smoky salmon and potatoes is dreamy: 

Here's the rest of the day's foods, in the order they emerged from the kitchen:

 I made home made tomato sauce, with the last fresh tomatoes from my yard. I added garlic, onions and parsley to it and let it stew on low for an hour or so. This is what the green beans boiled into. 

 

Green beans stewed in the sauce above it. 

 

Vegan gravy: rice milk, vegan butter-like spread, flour, pureed garlic, onions, dill, salt and pepper. 

No comment here - you all know what this is  ...  

 

As my husband called this: 'this was the star of the dinner': he made the cornbread and the bread (both vegan, with recipes we found online, just googling), and I crisped the cubed pieced first, in the oven, and then built the stuffing: made my own vegan broth, with salt, pepper, fresh carrots, celery, mushrooms, onions, garlic, parsley, and baked it all together at the end. It tasted like the whole garden got dumped in the baking dish.  

My personal favorite: the mashed potatoes. The only thing that went in them, besides pepper, salt and garlic powder are:

Roasted cauliflower: you mix it in with onions and garlic puree (see a pattern yet?!), and lay it on a cookie sheet, put it in the oven till it softens and it starts charring at the edges.

  

Vegan pecan pie, and honestly, the best any-kind-of-pie I have ever had! There is no skimping on flavors in this house! I manage the savory, and my husband manages the sweet tastes for sure!

 

 

 

Our table, finished, and my plate. I hope everyone had a plentiful, delicious and peaceful Thanksgiving!  

Let the Holidays Begin!

I have been doing pretty well on my (not so new anymore) vegan and lowest fat diet. It's not so new anymore when it's been a year next month since I started it. One day at a time ...

I am not missing meat at all, which is a common question I get. The minute you stop thinking of "meat alternatives", you're pretty much set. If you're going to continue wanting vegan bacon, you'll never want anything but the real thing. I just learned to color within my new lines. Or better bet, I tell folks that being vegan is not depriving at all. It's like coloring with a limited set of crayons: you can still color, just as much as everyone else. But my crayons box only has 10 sticks  instead of 24, which is what everyone else's box has. You just learn that that's your reality and your "box" and those are the tools you have access to and the tools to keep you afloat and successful. You will survive and then some. You will get creative about recipes and what foods to make for what occasion. And you will be fine. And full, for sure, I am here to assure you of that.

But I was a bit melancholy over possibly missing one Holiday staple that I was sure I will not be able to "adjust" to meet my diet. There is nothing that spells Christmas clearer for me than a good glass of (low fat, lite) eggnog spiked with some rum. So, I was thinking that for sure that will have to be eliminated from my tradition starting this year. Well, think again.

I found this recipe (below) online and my rock star husband, who is my new personal chef when it comes to mixed drinks and bread making and baking goods in general, made it for me. Oh my word, it is so delicious! I skipped the coconut milk because of the fat content there, and I used rice milk which only has 2 total grams of total fat and 0 cholesterol and 0 saturated fat. I did use the cashews, but you can see it's only a third of a cup and one batch makes about 3 small tumbler glasses (servings), on ice. I will try without the cashews next time, as I think the flavors and the dates alone will be enough for consistency and aroma.




                                              

 
Let the holidays begin, folks! I am all set!

Check back soon, as I am about to document my first 'mixed' (vegan + not, for my husband) Thanksgiving prep. Anything could happen, really. I might have forgotten how to bake a turkey. We shall see. One day, and holiday at a time ...

And no, we absolutely do not buy "tofurky" in this house. That just seems wrong! 

 

The finished product. Cheers, all! 

Trying Out Vegan Moussaka

Lots of people wonder "what do we eat" when we have FH?! First off, what we eat doesn't seem to really make a difference, for better or worse. But I personally don't want to add to the badness by eating more stuff that makes me add fat to my arteries. 

I have eaten meat all my life. But as I grow older and sicker, I choose to eat leaner, closer to "natural" and lighter in fats. At least in the animal ones. 

For many other (new) health reasons lately, those who follow this blog more or less frequently know that I am eating vegan and soy free food lately. 

One of my friends asked me this weekend if "I have a new cookbook". Maybe I should write one - because there is no vegan, soy free cook book that I can find. But I come up with recipes that would fit that description every day.

Tonight, I was craving moussaka. I have made this dish all my life - I grew up eating it, but it always has lots of oil and lots of meat in it. I have made it with turkey in my own home, but turkey is off limits for me now. But the one I made tonight, totally invented by me, turned out so delicious that I just had to share. I did use a teaspoon and a half of low fat oil, as follows.

So, this is what I did:

- in a pot, I boiled 4 potatoes just in plain water
- in a (ceramic) pan (so it won't stick!), I sauteed in one teaspoon of canola oil in this order: onions, celery, garlic, cubed fresh tomatoes till everything was a sauce;
- for spices: salt, pepper, Italian herb mix and just any kind of dry herb seasoning you have handy (little salt, and all natural, if you have some); 
- I added to the pan chickpeas ground in a food processor (this is my meat substitute);
- when the potatoes were boiled but still had a bite to them, I peeled them and sliced them in thin slices
- I "lined" a casserole dish (9 X 12 in Pyrex dish) with a drop of grape seed garlic oil (put some on a paper towel and smear it on the bottom and the sides of the dish);
- I put one layer of sliced potatoes, then covered it with the vegetable mix; then repeated - potatoes and chickpea and veggie mix; finish with loose potatoes and add olives on the top
- pour a small can of no salt added tomato sauce and add some water, so the potatoes can finish boiling;
- put the dish in the oven for about 30 minutes on 425F.

I did not miss the meat one bit. I never do anymore, but this is the first time I made the moussaka without meat and it made no difference - the craving was met. My meat eating husband loved it, too. He said it was "creamy" because of the chickpeas. 

I hope you try it and let me know what you think. Or just enjoy it! 

 
 

Camping, Vegan Style

Summer’s been so busy and so beautiful (no wild fires and fair air, for a change – yay!) that I even forgot what the mountains look like with snow on their tops. It’s been toasty, but we needed some heat. I needed some heat, to charge my bones for the long winter coming.

One of the things we do in the summer (and spring and fall, too) is camp. I used to look so much forward to eating while camping: hot dogs, especially (mine were always turkey, fat free), baked beans, bagel and (fat free) cream cheese with turkey bacon for breakfast. Yum!

But since lately I have been eating only a vegan diet, this year’s been the first time when I camped on all veggies. I was a little nervous, really, because I did not know if I could stay “full” for two days, while hiking and doing stuff around camp on simply … plants and fruits. But it worked out nicely – as you can see in some of these pictures.

I have also found some new products, as you’ll see, that are natural and “gunk free” (I hope! – as much as we can trust the labels, of course) and that taste like real food.  

 

For dinner one night, I had baked beans, with polenta (which I made at home and packed in a plastic ware dish) with fresh corn on the cob, grilled on the camp fire. 

 

For lunch, I had a sandwich made with vegan home made bread (thanks to my husband!), Boulder Canyon potato chips (see below) and tomato salad (I cut the tomatoes and onions at home and put them in separate dishes, then mixed them together with salt and pepper at the camp site - you don't want to mix them the day before, because they juice too much and they lose the flavor). 

 

This was a new find for me - the Boulder Canyon brand products - all natural and they are so delicious - nothing but potato taste in that bag.   

 

For "on the trail" snacks I had raisins and fresh cherries. What else says "summer" more loudly than cherries?! 

 

 Another night for dinner, we cooked all these veggies (fresh peppers, Brussels sprouts, potatoes, onions with some curry powder, salt and pepper) in aluminum foil on the open fire, and we mixed it into our vegan baked beans. Then, we had leftover corn on the cob along with it, for some comfort additional starch. It was so filling and delicious!  

 I decided that as far as food goes, you’re only limited by your imagination in how you cook it, and by your palate in what you choose to eat. But the options are there, and are plenty! My rule of thumb is: if there is a people under the sun that live happily and fully with only a plant and fruit based diet(and there are lots of peoples just like that, in countries where life expectancy is even longer than ours), that should be enough testimony for me that humans don’t need meat to live.

Although for an FH patient nutrition is only a very small fraction of what helps  manage our disease (usually, the bigger role is held by drugs), I feel much better when I don’t consume animal products. I am not a chemist, or a biologist, but I am very much in tune with my body. And overall, my body has been the happiest, lightest, less prone to pains since I have switched my diet this way. And every day, I am surprised by all the new options we have out there, including when we pack for a whole weekend in the middle of the woods, somewhere.

I will say one caveat for all the options we have out there: I cannot eat anything with soy, because of a personal intolerance to it, and I have found all the “meat substitutes” out there to be absolutely gross for my taste! However, once you really tell yourself there is no such thing as “meat” in your diet, you’ll stop looking for it, or for anything to replace it. And, to me, I find meat less appetizing now, after not eating it for 8 months. So, there is no missing it, at all. And I have never been an avid dairy consumer anyway, so I guess the “switch” has been easier for me. I am lucky!

Enjoy what’s left in the summer, all, and happy eating, wherever you are!

Milestone: Breakthrough Drug Approved

I think my family has been dreaming of a day where they can breathe easy and tell themselves "there is something for our child to treat this disease with" since I was 6. That's 34 years ago, for those who are counting. Well, their day might already have come!

 
As you already know by now, the PCSK9 inhibitor drug to treat cholesterol and potentially reduce the risk for atherosclerosis, heart disease and strokes has been approved by the FDA: as stated in this article. 

Europe had approved it the week before.

I am personally excited about the opportunities out there, but although I have access to this drug therapy here in my state, and although I would qualify for it with no problem, I am actually putting off taking it. At $8000-$10,000/ yearly, Cost is one concern, for sure, but the biggest reason is just wanting to wait for a couple of years to see if the results are really what's expected of it, and waiting to see if more long term side effects will be revealed with time. 

I just pray and hope that I will have the luxury of waiting.

All This Info and What To Do With It?

Well, since December, I have eaten mostly vegan food. I say “mostly” because sometimes, I am forced by external constraints (visiting friends I don’t want to justify myself to or just having no other options for food when traveling) to forego my strict diet.

I have tried to eat little to no oils, either, but there are still vegetable fats in the vegan foods I eat and they do freak my liver out, and they don’t get processed. They get in my blood stream and wreak havoc in my arteries.  

I was curious to see if my numbers have stayed dramatically low (for me), like they were in March. But I was not so lucky to keep the trend going.

Here’s a side by side view of my lipid panel in March and today, respectively:

The diet was the same then and now. The only two things that for sure are different are:

-          In March, they took the tests while I was fasting; this time, I was not;

-          In March, I was taking Zetia about 2-3 times a week in conjunction to Lipitor; right now, I was taking no Zetia at all.  

My new cardiologist is adamant that I should not stop Zetia so he put me back on it. It does make the Lipitor work better and this definitely has shown in tests before.

Whatever the reasons are, though, for the increase in numbers, as you can imagine, I am not happy. Not that I would expect diet adjustments to make a really tremendous difference anymore (as you know, diet is irrelevant for us, FH folks), but I was at least hoping that the numbers can stay where they were in March, for a long, long while. But, as life with this disease would teach you – the numbers will always consistently shock you.

As always, I pay attention but I try not to dwell on the grim figures here. I will continue the diet, which, finally, has become a very comfortable lifestyle for me, and I will continue my medication, bringing back the Zetia, of course.

On another note, my new cardiologist is the head of the PCSK9 inhibitor drug research for my state , and he is pushing me persistently to be part of the research, or to be his second only patient to get the drug, if it gets approved this week, in fact. Although I do want, with all my heart, to have my numbers under control and at a normal level (not just “normal, for me”), although I do want to avoid any kind of heart procedure or surgery in the near future, I am still very cautious of these new drugs. I know they promise a lot, but I still would like them to have a bit more research and findings under their name before I “embrace” them. So, for now, I will hold off taking this medicine.

This kind of decision is commonplace for people with rare diseases. We are faced with this every day, perhaps – some amount of research, big promises, and lots of hope. And every single time, with every single patient, it is a singular decision, and a personal one. There is no judgement to be placed on our individual decisions. There is staying informed, engaged, and not feeling guilty about that resolution we choose. It is your life, your health, your well-being. No one, no doctor or medical study can ever validate that.

Maybe it’s the biggest mistake I make and it could cost my life, but at this point, with the information I know and the mind frame I am in, this is the decision I am sticking with. For now. This is no advice, either. It’s just my opinion, regarding what happens to the body that hosts my mind and soul. Today.