Jeff in the tourist district of his home town.

A year ago, I would never have imagined finding myself where I am today. I just had my annual round of heart tests and learned that my heart appears to be recovering. This is something you can’t take for granted, but my ejection fraction — the measure of heart function — has tripled since it was originally recorded over the Christmas holiday in 2008. Similarly, my heart/lung function has improved. I’m nowhere near the normal range, but it’s so much better from where I started. It feels like a rebound and a second chance — I am almost certain to join the elite club that has beaten the 7 percent two-year survival rate for cardiomyopathy and congestive heart failure. I am alive, and I feel incredibly lucky.

On the other side of things, however, I am getting divorced. This life event, which began last summer, is nearing its end. What a strange, terrible and wondrous journey it’s been. I have seen my identity scattered into atoms and then reconstituted. This is the second time in two years that this has happened — the first challenged my notion of what it means to live, and the second has made me reconsider what it means to love. There are two major boundaries in my life’s history — the first separates me from my near-death experience and everything that came before, the second separates me from my marriage and all that has come after. I know that I am still fundamentally the same person I was two years ago, but I’ve changed so much that I have a hard time viewing my past self as me. The things I thought were most important just don’t count, anymore.

Through it all, I feel hopeful and optimistic. Friendships have greater importance to me now, and new people have entered my life. My experiences have broadened and taken on greater substance. I am no longer content to slumber through the daily grind, but to experience things, both good and bad, as an active participant.

And I think it’s safe to say that I don’t have any more regrets.

Self Portrait, 08.23.2010

As Aaron Wolfe, my old friend and the tattoo artist who did the piece, said to me: “People are going to be asking you about this tattoo for the rest of your life. And you can tell them whatever you want — you can tell the truth, or you can lie.  It’s your choice.”

There are plenty of lies to be had, for sure. One of my acquaintances thought it was an outward symbol of the apocalyptic times in which we live. A sign of pessimism regarding the future. And though I am pessimistic about the future, it’s not the reason I got the tattoo.

Nearly two years ago, as I’ve written in the past, I was diagnosed with cardiomyopathy and congestive heart failure. I was expected to die — and I went through a grueling two weeks of hospitalization that was one part health care, one part imprisonment. My clothes were stripped from me, and I was forced to wear a hospital gown that thousands of other patients have worn. No underwear, no socks of my own, my every moment managed by a legion of doctors and nurses. When I got out of the hospital, I was an emotional disaster — fatalistic, broken, riddled with anxiety and depression.

And as silly as it sounds, one of the things that got me through it was a return to playing Halo 3 online with my gamer friends, of taking up the emblem that I’d used since 2004 and Halo 2, of going into virtual battle under my standard and kicking ass. When I crossed the one year survival mark, I knew I wanted to get a tattoo — and I knew I wanted to get that emblem on my arm. It just took me some time to get up the nerve to have it done.

And now it’s there, the gas mask rendered in negative space on a solid red field. It encompasses most of my right bicep, and when I look down and see it, I remind myself that I am a survivor, that I have lived longer than any medical doctor thought I would. It is my standard, and it will always be a part of me — long after Halo is gone, or I’ve moved on from gaming, it will still represent me as a fighter and a survivor. It is inevitable that I will be hospitalized again, but I will not lose my dignity when they strip my clothes and hook me to machines. I will look down at my arm and know myself. And regardless of what’s done to my body, I will still be whole.

"I have defied gods and demons. I am your shield, I am your swords. I know you -- your past, your future. This is the way the world ends."

A low sodium diet will allow you to keep your own heart — it won’t eventually remove the need for an LVAD or a heart transplant, but it will forestall that inevitability. So think about that before you decide that you really can’t do it.

The approach I take is based on the Weight Watchers diet. Every day, I give myself a certain allotment of sodium — in the beginning, it was 2,000 milligrams a day, but now it’s about 1,500 milligrams a day. Every meal I eat, I determine the amount of sodium in it and subtract it from my total. Once I get down to zero, I don’t permit myself to eat any more sodium.

It took me a very long time to get the formula just right. It requires reading the nutritional label on everything you buy, and making sure that whenever you eat something, you stick to the serving size as a measure of sodium.

For example, a jar of Green Mountain Gringo Salsa is 90 mg of sodium per two tablespoons. That means that if I want a modest helping, I can eat four tablespoons for 180 mg of sodium. It doesn’t sound like a great amount — and it isn’t — but before I mastered cooking my own sodium-free salsa, it was the way I had to go.

Following the serving size is the key — even though I don’t believe for a moment that it’s an accurate representation of how much sodium is in a given portion of food, it is the best measure we have.

Now, there’s plenty of food that contains only trace amounts of sodium — fresh fruit, vegetables and fresh meats. I don’t bother to count them, although some stricter adherents to the low sodium diet do. This is your choice to make — for me, I worry about prepared foods and sauces, but if you want a perfect count of sodium, you should look up the sodium values in fruits, vegetables and meats and add them into your total.  It’s up to you.

To give you a general idea of what my typical day looks like, here’s what I eat, with the understanding that I don’t go over 1,500 milligrams (mg) of sodium:

• For breakfast, I have two granola bars and a piece of fruit. The granola bars are at 50 mg each, totaling 100mg of sodium. The fruit I count as 0, so I am left with 1400 mg of sodium for the rest of the day.
• For lunch, on work days, I have a frozen Healthy Choice meal. It’s not a lot of food, but the sodium levels are pretty low, and I’ve come to really like them. I prefer the “Cafe Steamers” line of meals, especially the Cajun-style Chicken and Shrimp bowl, which costs 570 mg of a sodium. This leaves me with  830 mg of sodium for the rest of the day.
• Now, I prepare most of my dinners from scratch, but it didn’t used to always be that way. Before I cooked everything from scratch, I used off-the-shelf products. For a spaghetti dinner, I would fry up some ground pork or hamburger and add it to some Classico sauce. The spaghetti itself, cooked without salt, is 0 mg of sodium. Classico Tomato and Basil sauce is 310 mg of sodium for a half cup, so one cup comes out to 620 mg of sodium. That leaves me with 210 mg of sodium for the rest of the day. Recall that I don’t count the meat, which has only trace amounts of sodium.
• Later that evening, I’ll have some chips and salsa as a snack. The no salt added restaurant-style tortilla chips from Whole Foods have 0 mg of sodium per serving, so I can eat as much as I want. The salsa, as previously reported, is 180 mg of sodium for 4 tablespoons, so that leaves me with 30 mg of sodium, just under my maximum for the day. And I’m finished.
• Remember, you should always supplement your meals with fresh fruits and vegetables.

That’s only an example of what I consider to be an “easy” day of low sodium living. You can eat a lot more if you make your foods from scratch with fresh ingredients. In future installments in this series, I’ll go through a week of how I eat now, including recipes, and show you just how livable a low sodium diet really is.

And one final note, after a year of living on this diet, I’ve lost over 45 lbs! I went from size 36 pants, to size 32 pants, and the 32′s are kind of baggy. So if watching your weight is an issue, this is a great way to lose weight and stay off the transplant list. A win-win, in my book.

If you’re on heart medication, don’t even think about trying a salt substitute. Salt substitute is typically potassium chloride, and heart patients often have issues with too much potassium as a side effect of their medication. There’s no need for you to increase the amount of potassium in your system — so salt substitute is out. Also, do you really want to put something in your body called “potassium chloride?”

Next you need to throw away all your ketchup, hot sauce, barbecue sauce, pickles, relish, spaghetti sauce, canned vegetables, canned and packaged meats, hot dogs, canned soups, boxed soups, bullion, salted butter, margarine, lunch meats, all frozen meals (except for Healthy Choice and Lean Cuisine), cheeses (except for swiss) and any other prepared foods you might have. You won’t need these, either — they are just as toxic to you as the table salt. You can, however, keep the ice cream if you stick to the serving size.

Oh yeah, and that salt shaker you keep on the counter — you can throw that away, too. I know you thought I’d miss that, but I don’t miss anything.

It is also strongly recommended that you stop drinking caffeinated beverages — this includes so-called de-caffeinated coffee and tea. Herbal tea may be okay, but check with your doctor, first — you don’t want it to interfere with your meds.

By now, your kitchen has been thoroughly emptied, and you are no doubt wondering what’s going to happen next. Don’t worry, all will become clear in due time. Stick with me, and please trust me. The hard part is over. Now on to the fun part.

Getting Equipped

Since you’re going to need to start cooking for yourself, you’re going to need to be properly equipped. Here are the essentials of any good kitchen:

• At least 1 large pot
• At least 2 sauce pans
• At least 2 frying pans
• At least 2 baking sheets
• At least 1 pizza pan
• At least 1 cheese grater
• At least 1 broiling pan
• At least 2 mixing bowls (a set containing many different sized bowls is recommended)
• A set of good sharp kitchen knives
• At least 2 large spoons for stirring
• At least 2 spatulas
• At least 1 vegetable peeler
• At least 1 whisk
• At least 1 garlic press
• At least three pairs of tongs
• A small cutting board
• A large cutting board
• Assorted large sealed containers for flour, sugar, rice and other supplies
• Large and Medium Freezer Bags
• Microwavable storage containers (such as Gladware)
• 1 spicerack
• 1 slow cooker (such as a Crock Pot)
• 1 food processor
• 1 mixer
• 1 tri-color male beagle (for purposes of spill clean-up)

Spices

Spices are critical to cooking, especially now that you’ve eliminated salt. Here’s what I would recommend:

• Black Pepper
• Red Cayenne Pepper Powder
• Chipotle Pepper Powder
• Cumin
• Sodium-Free Chili Power
• Sodium-Free Italian Seasoning
• Sodium-Free Garlic Powder
• Dried Oregano
• Dried Cilantro
• Dried Basil
• Dried Parsley
• Fennel Seed
• Crushed Red Pepper Flakes
• Mrs. Dash (a blend of different peppers and spices often marketed to heart patients)

Obviously, you can add more to your taste — just make sure you check the label and are 100% confident that the spice contains no sodium. Many powders, including Chili Powders, contain salt, so be careful.

Basic Ingredients

The following items are the basic ingredients for many low-sodium recipes, and you should always have them close at hand:

• Several cans of Hunts no salt added tomato sauce
• Several cans of Hunts no salt added tomato paste
• Several cans of Hunts no salt added stewed tomatoes
• Several cans of Hunts no salt added diced tomatoes (they even make basil, garlic and oregano-seasoned varieties!)
• Several cans of no-salt added black beans (or dried black beans)
• Several cans of no-salt added garbonzo beans/chick peas (or dried garbonzo beans)
• Vegetable Oil
• Extra Virgin Olive Oil
• Flour
• Sugar
• Corn Starch
• No-salt added butter
• Rice (whatever kind you prefer — I usually have long-grain white rice in my kitchen)
• Low sodium chicken broth

Ketchup

There are two major brands of no-salt added ketchup: Heinz and Hunts. The Heinz ketchup tastes the most like “real” ketchup, but uses potassium chloride as a salt substitute. The Hunts ketchup does not include a salt substitute, and tastes a little strange if you’re used to regular ketchup. I personally use the Heinz brand because I like it better, but I try to be conservative with how much Heinz no-salt added ketchup I eat due to the potassium chloride.

Meats

Fresh meats contain trace amounts of sodium, but in general  are safe for you to eat. As long as the meat is fresh and not pre-marinaded, you should be all right. I regularly eat:

• Chicken
• Hamburger
• Ground Pork (which I make into homemade sausage)
• Steak
• Fish (though I don’t really like fish that much)

Fruits and Vegetables

Fresh fruits and vegetables only contain trace amounts of sodium, so you can usually eat as much as you want. For fruits, I would recommend that you get whatever you like, but as fresh vegetables are used in most recipes, I would recommend keeping a supply in your fridge.

I generally keep my kitchen stocked with the following fresh vegetables:

• Russet baking potatoes
• Red onions
• Fresh white garlic
• Roma tomatoes
• Vine ripe tomatoes
• Serano chili peppers
• Jalapeno chili peppers
• Red hot chili peppers
• Anaheim chili peppers
• Green or red bell peppers
• Fresh tomatillos
• Fresh cilantro
• Fresh mushrooms
• Cucumbers

Breads

Breads are tricky, because they tend to contain a lot of sodium. Many people on a low sodium diet get bread makers to make their own bread, but I’ve found most of the low-sodium bread recipes to be pretty terrible overall. I generally keep hamburger buns around that are 150 mg of sodium per serving. For sliced bread, Ezekiel Bread (found in the freezer section) tastes great, and is fairly low sodium.

Lately, I’ve been baking my own sodium-free pita bread once a week.

Cheese

There’s no easy way to say this, so I’ll just come out with the truth. Most types of cheese have too much sodium for you to eat. There are low-sodium brands out there (particularly at Trader Joe’s), but they are very difficult to find. The only cheese you can safely eat is swiss, which usually comes down to 40mg of sodium per slice.

I keep around Kraft’s extra-thin sliced swiss, and Harris Teeter’s store brand aged shredded swiss. I don’t eat any other kind of cheese due to the high sodium content. Fortunately, I like swiss a lot, but it was tough for me to give up cheddar.

Fresh mozzarella (the kind that comes as balls in liquid) is also usually fairly low sodium. But other than that, you’re going to have avoid any other kind of cheese.

Condiments

If the serving size for a condiment is under 60mg of sodium, I will usually keep them around. For instance, I keep yellow mustard around, and usually add a teaspoon to burgers.  However, I never go over the serving size. If a condiment contains more than 60 mg, I usually don’t bother with it — it’s wasted sodium that I could spend on something more meaningful.

Spaghetti Sauce

Alas, low-sodium spaghetti sauce is generally terrible. Francesco Rinaldi and Amy’s Organic are the only two major brands that offer a truly low-sodium sauce, and I don’t care for either. Other brands offer a “heart healthy” variety, but usually contain the same level of sodium as the non-heart healthy varieties. I usually make my own spaghetti sauce — it’s easy to prepare and tastes great.

Getting Supplies

If your local grocery store doesn’t contain much of what I outline above, I would recommend making a monthly outing to the nearest Whole Foods to stock-up on low-sodium supplies. If that’s not an option for you, there are a number of online stores that offer low-sodium products. These tend to be overly expensive, but if they’re the only option you have, then you should use them:

• Healthy Heart Market
• Salt Watcher

The survival rate for someone with CHF is 7% in the two years following diagnosis. This rate is worse than many aggressive forms of cancer, including lymphoma and breast cancer. Now, this isn’t from a lack of medical solutions — there is a whole host of tried and tested heart medication out there to help patients survive. In addition, there are implanted cardiac defibrillators (ICD’s) that can shock a failing heart back to life and correct dangerous arrhythmia (I have one of these installed); left ventricle assist devices (LVADS), which augment and support a failing heart, and ultimately, heart transplant. Experimental options also exist — the stem cell and artificial organ creation fields offer promising treatments in the future — but they are largely untested and for now are not a viable option.

No, the key problem with CHF patients is their inability to adopt a true low sodium diet. A failing heart is too weak to pump fluid through the body — this results in the accumulation of fluids in the neck, ankles, hands and lungs. The role of CHF medication is to reduce the load on the heart, limit the fluids that accumulate in the body and reduce blood pressure so the heart doesn’t have to work as hard. But as doctors will tell you, heart medication is not enough. Diuretics are not enough. You need to radically reduce the sodium in your diet — without doing so, you will inevitably succumb to the symptoms of CHF.

Reducing sodium in your diet sounds easy enough, but most patients don’t have the medical and dietary knowledge to understand what a low sodium diet entails. In addition, our society depends largely on processed or prepared foods, which are literally contaminated with sodium. The average American is supposed to eat just 2,000 milligrams of sodium a day, but in fact consumes more than 5,000 milligrams. A low sodium diet is vaguely defined as being under 1,500 milligrams of sodium a day, just 500 milligrams shy of the recommended norm. But with many meals containing twice that amount, it’s very difficult, if not impossible, to figure out how to achieve that diet without help.

When I was first diagnosed with CHF in December of 2009 and sent home after a week-long hospitalization, I had completely succumbed to depression. I lay on the couch, I felt horrible, and I was convinced that I was going to die. My wife and mother made various low sodium meals for me, but without a guide on how to do it, I was mostly given unseasoned chicken and plain rice. Low sodium, yes, but akin to eating mushy cardboard.

At this point, patients often give up. They decide they can’t live without regular food, and they pack it in, hoping that they get by on their meds alone. But something happened to me that gave me the inspiration to move on.

As I lay on the couch, contemplating my own mortality, I watched a three-day marathon of Anthony Bourdain’s show, No Reservations, on the Travel Channel. Anthony Bourdain, if you are unaware, is a former chef and author who travels abroad to learn about other cultures through their food. Watching this show, I also watched different types of food being prepared, often in developing world conditions. So many of the dishes I saw looked amazing, and I was struck by how easy they seemed to be to make given the sometimes less-than-ideal conditions in which they were prepared. Now, I had basic cooking utensils in my kitchen, but like many Americans, I ate out every night. I rarely used them. But now I had an idea: I could learn to cook without salt.

I combed the Internet, and found an amazing site — Low Sodium Cooking.com — that contained recipes specifically created for heart patients. Its author, Dick Logue, has survived for 10 years without a heart transplant or LVAD due to his commitment to a low sodium diet. This is five times the expected survival rate of a CHF patient. If Dick Logue could do it, then maybe I could, too.

My favorite food is chips and salsa. With very few exceptions, store bought salsa is filled with sodium. Dick had a recipe for salsa on his site. So, against my better judgement, I hauled myself out of bed and with my family in tow went to the Harris Teeter supermarket in the Adams Morgan neighborhood of Washington, D.C., and bought myself the supplies I needed to make it. This was an incredibly difficult trip — both emotionally and physically. I was sure I was dying. I wept while I was in the store, gathering the vegetables I needed. I had never cooked anything that complicated in my life. But I was going to make something I liked, and I was going to at least go down enjoying food, again.

So I made that salsa — it took me three hours, but I did it. My wife even made low sodium chips for me out of tortilla shells (I would later discover unsalted tortilla chips at Whole Foods that contain 0 mg of sodium). It wasn’t quite what I wanted, but it tasted good enough. I could do this.

Now, it’s been a year and a half since that moment. Last weekend I made homemade pitas, Greek-style lamb kabobs and rice pilaf with less than 150mg of sodium content. My ejection fraction, the number that describes how strongly your heart is pumping, is just 15%, but I go to work every day, cook most of my own food myself, and live a relatively normal life. My lung function, while not normal, is good enough at rest — I am not drowning in my own fluids. No coughing, no shortness of breath, and I have the ability to walk fairly long distances (though days in the sun can wipe me out). Many people with better heart function than I have are on heart transplant lists and have LVADS installed. The only difference between them and me is diet — I am on an aggressively low sodium diet, and they are not.

I can’t describe how many patients I’ve met over the last year with classic heart failure symptoms who say they can’t do this. But the reality is, they choose not to. They can do this. CHF is a horrible disease, but unlike cancer, it’s something that you can fight — you can take action to help ensure that you don’t succumb to it. As I said, Dick Logue has lived for 10 years and still works full time, and I have lived over a year and also work full time. I’m not special — I’m just a normal person who adapted his diet. And despite what you might think, you can, too.

Over the next few weeks, I will describe how I adhere to a low sodium diet and still enjoy eating. I prepare food every night that I enjoy, and it contains very little sodium. This series is mainly for the purpose of sharing with my fellow patients at the Washington Hospital Center congestive heart failure clinc, but hopefully other patients will find this helpful. Much of what I’ve learned, I’ve learned from other people on the Web, and I will reference them as much as I can. Please keep in mind that I am not a doctor or dietician — you should always check with your doctor if you have any questions about my advice.

This is my personal blog, and I will admit that I write about a wide range of subjects, of which cardiomyopathy and CHF is one. I hope you aren’t turned off by the political beliefs espoused on this site — what we share as heart patients transcends political disagreements. I want to help you live, just as others have helped me live.

Remember, you can do this. You will have to change your life — there’s no question that it’s a difficult transition — but it’s one you can make. You can both eat well and survive. I promise you, this is something you can do.