A Stronger Heart

I was excited to see that recently someone found a January 2014 post about my congestive heart failure, from dilated cardiomyopathy – and commented on it.   I have not been posting for a long time, and it reminded me that I need to update about my health.

I was diagnosed with my heart disease two days after Christmas 2013. I was on medical leave from work for 8 weeks. I improved and felt stronger: I owe this to God, the right medications, a low sodium diet, and commitment to fitness. My improvement was evident when, in early April 2014, my echocardiogram showed that my ejection fraction (pumping strength) had increased from 15% to 32%. 55-60% is the normal range, and 45% or below is considered congestive heart failure. Still, I was referred to an electrophysiologist to address a delay in my circuitry. I have a “left bundle branch block”. In May 2014, an ICD (implanted cardioverter device) was implanted. This device is a defibrillator with a 3-lead biventricular pacemaker. It protects me and helps my ventricles beat in sync.

I will make a long story short; my echocardiogram in June (2015) revealed that my pumping strength/ejection fraction is at 53% (low normal)!   I am amazed that it has come so far. God, exercise, watching my salt, my “bivent” pacemaker, and of course my medications, are responsible for my greatly improved heart health.

I understand that the ejection fraction can change, that I must continue taking the meds, that some shortness of breath that I still experience sometimes, mean that I continue to have congestive heart failure. I still have limitations.

Shortly after the good news, I bicycled 25 miles in Bike MS after training for several months. I also joined Toastmasters, and I plan to do a speech on heart health in early February.

I wish I had more time to write in this blog. I will try to write more often.

Thank you for visiting Julie’s Life Joy.bike MS


Feeling Sane Now – Sodium Reference for Everyday Foods

I find the biggest challenge in living with heart disease is the sodium-restricted diet.  Fortunately, I was already accustomed to watching my calories and fat, and bringing all my food to work. There’s no heart disease in my family.  Sodium was previously too much to worry about. I normally eat Lean Cuisine and other low-cal frozen entrees for lunch, alternating with a salad.  Now, I must eliminate some of the entrees unless I want to spend most of my sodium budget at lunch.  Frozen entrees are listed at the bottom of the post.
       Over the last 6 weeks of noting sodium from the backs of packaged food products and looking up information on websites, I have created a reference chart.  At first, having to look at and consider all of this drove me insane.  Eating was such a challenge. Over time I have learned, and I have a better handle on eating.  Whew.  Most of the foods include only those that I have eaten or might eat.  I have also included some items I don’t eat but I think are useful for you to know as having surprisingly high content.
This is not all-inclusive. I did not include frozen or canned vegetables. Too many products. Look for frozen veggies without seasoning or sauces. Canned often come in lower sodium versions.
For complete nutritional data, Google is useful if you search by name + sodium. I have some links listed under my Links section.
Bacon – low-sodium 2 pieces 190
Bacon – regular 1 piece 200
Cereal, Frosted Mini Wheats 1 cup zero
Cereal, Kashi Go-Lean  1 cup 90
Cereal, Kashi Tr Bry Crunch 3/4 cup 125
Cereal, Raisin Bran 1 cup 210
Egg Btrs Egg Whites 3 TBSP 75
Egg Btrs Original 3 TBSP 125
Oatmeal, instant – Quaker ½ cup 160-200
Pancake mix – buttermilk – Aunt Jemima 1/4 cup dry 480
Pancake syrup – Hungry Jack ¼ cup (4 TBSP)  180 for all, or 45/TB
Pork sausage 1 patty 400
Waffles – frozen Eggo 2 waffles 390
Applesauce – Musselman’s freebie! zero
Beans, black, reg. – Ranch Style 1/2 cup 400
Beans, chili – Brooks Mild 1/2 cup 370
Beans, chili – Chili Magic 1/2 cup 790
Beans, kidney – organic 1/2 cup 100
Black beans, Bush, Low sodium ½ cup (1/3 of can) 240
Bread, Italian 1 slice 240
Bread, wheat, light SaraLee 1 slice 90
Butter spread, (I Can’t Believe….) 1 TBSP 85
Cheese – Kr Mild Cheddar per oz. (1/8 of block) 180
Cheese, American 1 slice 468 !!
Cheese, feta ¼ cup 340 !!
Cheese, Mexican shredded  ¼ cup 220
Cheese, shredded  ¼ cup 180
Cheese, swiss deli BoarsHead Lacey swiss cheese (swiss is the lowest) 1 oz 35
Chili seas – 30% less sdm McCorm 1 TB 240
Cottage cheese – 1% milkfat 4 oz. 459 !!
Crackers, Wheat Thins – Hint of Salt 16 crackers 55
Crackers, Wheat Thins red. Fat 16 230
Deli meat, BoarsHead Oven Rst Tky Br Lwr Sodium 2 oz. 340
Deli meat, BoarsHead OvenGold Rst Chicken Lwr Sodium 2 oz. 350
Enchilada sauce 1/2 cup 280 mild gr chile, 360 reg.
Jelly 0-25 0-15
Marinade – Lawry Hrb Garl 1 TB 340!!
Nutella (choc hazelnut spr) (compare to peanut butter) 2 TBSP 15 **
Parmesan cheese 2 tsp 90
Pasta (no salt in water)   0
Peanut butter reg. / Jif natural 2 TBSP 140 /  80
Potatoes, mashed – Potato Buds.  Reduce salt by half, 240 mg 1/2 c 400
Snack bar – Nutri-Grain – range per piece 110 to 125
Spaghetti sauce Muir Glen Ital Herb ½ cup 280
Taco seasoning Low sdm -Old El Paso 1/6 envelope (1 TB) 260
Taco shells hard – La Tiara 1 0
Tomatoes, chili – Brooks mild 1/2 cup 320
Tomatoes, diced – no salt add- Hunts 1/2 cup 15
Tomatoes, diced – no salt add -(Ital seas) 1/2 cup 50
Tomatoes,reg. canned – diced Mkt Pntry nat. / other 1/2 cup 180 (nat.)/  330-380 (other)
Tortilla – Flour – compare! 1 300-340!!
Tortillas – compare!   Corn 1 20
Yogurt – Activia.regular per unit 65
Yogurt – Greek – Oikos per unit 45
Yogurt – Yoplait light per unit 80
MEAT (not breakfast) – Raw unless noted otherwise    
Beef – extra lean gr beef/ top sirloin (raw) 3 oz. 60 / 56
Beef – top sirloin raw 6 oz. 90
Bratwurst – Johnsonville orig 1 810
Chicken – drumstick (raw) 1.5 oz 42
Chicken – wing (fried) per wing 157
Chicken breasts raw- research viewing packages at Walmart:
  – Frozen bagged:  Forester Farms /Tyson 4 oz. 130 / 180
   -Fresh Tyson *Natural* Tenderloins / other  4 oz. 110 / 220
Fish – salmon / halibut 3 oz 60
Fish- canned – tuna / salmon 3 oz 320 / 471
Ham, sm honey / roasted / ctr cut cntry style lean 4 oz. 1021/1345/3056
Hot dogs – the lower fat dogs have less sodium.  According to a couple different sites, the Best-Tasting is Hebrew at 370 mg, BoarsHead (skinless) 97% fat free 270, Applegate Farms uncured beef 330.
Meatballs, frozen  – Rosina 6 530
Pork chop / roast 3 oz. 51 /40
Shellfish 3 oz 48
Tuna, canned 3 oz. 320
Turkey – dark mt / lt meat 3 oz 66/54
Hot chocolate fat-free sug fr Nestle 2 TB dry 130
Juice, apple 8 oz 25
Juice, orange 8 oz. zero
Milk 2% (other are similar) 1 cup 120
Milk, soy – Silk light 1 cup  135 (67.5 for 1/2)
Soda, Diet Pepsi per 12 oz can 35
Tea, Citrus green  – light per bottle 150
Ketchup (Heinz) 1 TBSP 160
Mayonnaise 1 TBSP 110
Mustard 1 tsp 60
Salad – Dressing – Newman – lt country french** 2 TBSP 240
Salad – Dressing – Newmans Rasp Wal light 2 TBSP 120
Salad – Dressing – Italian 2 TBSP 350!!
Salsa – fresh (Jack’s mild) 2 TBSP 105
Soy sauce – low sodium 1 TB 533
Soy sauce – reg 1 TB 920!!
Steak sauce – A1 /  Heinz 57 1 TB 280 / 150
Stir fry sauce, orig La Choy 1 TB 170
Taco sauce 1 TBSP 90
Brownies, dark fudge, mix, baked – Betty Cr 1 of 20 100
Cake, angelfood 1 of 12 210
Cake, white, baked, no frosting 1/12th of round 288
Cake mix, baked – various choc. 1/10th 360-420
Cake frosting, vanilla – Betty Cr 2 TB 65
Cookies, animal crackers 16 crackers 105
Cookies, general  1 less than 70
**Graham cracker 8 (2 sheets) or 4 (1 sheet) 160 or 80
Ice Cream – general – avg mg 1/2 c 50
Jello – gelatin ½ cup 55
Pudding – instant ½ cup 340 !!
Pudding cup – Snack Pack per unit 140
I could not copy from the website, and there are too many listings.  This is a great website that ranks frozen entrees highest to lowest.   
Healthy Choice Sweet Ginger Chicken 280  
Lean Pocket Whl Grn Tky Broc Ched 410  
Lean Cuisine Glazed Chicken 450  
WW Sm One Cranbry Turkey Med. 460  
Kashi Chicken Pasta Pomodoro 470  
Healthy Choice Gen Tso Sp Chk 500  
Lean Cuisine Rosemary Chicken 510  
Healthy Choice Gld Rst Tky Brst 520  
Lean Cuisine Salis Stk w Mac n Chs 540  
Lean Cuisine Herb Roasted Chicken 540  
Lean Cuisine Szechuan Stir Fry w Shrimp 550  
Lesn Cuisine Chicken in Peanut Sauce 550  
HC Classic Meat Loaf
Kashi Chicken Florentine 550  
WW Sm One Sweet & Sour Chicken 560  
WW Sm One Lasagna Florentine
HC Chicken Parm 580  
WW Homestyle Beef Pot Roast 590  
LC Meatloaf w Masted Potatoes 590  
LC Salmon with Basil 590  
HC Four Cheese Manicotti 590  

A Chart to Help Keep Your Sodium Low While You Dine Out After Driving in the Snow

First, note that February 7 is Wear Red for Women Day!  I only have a plain red T-shirt.  I guess I will wear it over long sleeves to hang out at home (medical leave).  I am going to http://www.shopheart.org to find a couple things to wear any time, and I’ll be ready for future February’s.  Maybe I’ll buy a St. Louis Cardinals red shirt, and that will cover everything.  This is the first year that wearing red truly has personal meaning.

The world outside my window is beautiful – blanketed with snow.  I wish I could walk my dogs in the cold weather.  For 5 1/2 years, I rarely let the cold and snow stop us, pulling on snow bibs and boots and getting out there in zero degree weather in the early morning before work.  I did it for my two black Labrador retrievers, Kiera and Jasmine, and for me, as it made me feel like I had overcome something.  I can’t wait until the weather warms up to 45 F or so, and on a non-windy day, I can walk the girls again.  Extreme temperature is the preventative for those of us with congestive heart failure (whatever the cause).

I love the snow, until I must drive on it and endure a slower go on the 35 miles to my workplace in St. Louis.  I am on medical leave right now, tentatively going back on March 3rd, so I love it even more. Hopefully this winter will lose some harshness before I go back.

I would rather not have my heart condition; I would rather be bundling up, driving, and feeling normal.  Based on my past experience and that of many  Christians I know, and the experiences of godly people in the Bible, I know that God has plans for us that take us beyond “normal”, plans that ultimately good. Often these plans are accomplished through challenges, difficulties and suffering.

   Jeremiah 29:11 (NIV):   11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

***Now to the main topic. a handy-dandy sodium chart to help us when dining out.  I gathered information from fast-food restaurants, plus some general tips about dining out in general.  I put them into a table that I created in Word, as I did not think that copy-pasting from Excel would work.  You will find some  formatting inconsistencies, as I could not determine how to delete columns.

At some point, I was frustrated with the comparison websites leaving out information, and I got tired of going to individual sites. It was taking too much time by the time I got to pizza, so there’s less detail there.  I hope you will find the chart useful.  My purpose was to create something I can print and cut out into a reference to carry in a purse, as well as having a useful quick reference for readers, so the font is reduced., **When viewing it online, you should be able to enlarge by pressing the keys Shift and +.

 **My chart primarily lists the foods that are less than 1000 mg sodium.  For myself, I do not dine out often, and I would not eat the foods over 700 mg unless it was dinner.   Some establishments are listed as eye-openers.

Also know that I will have a separate chart and post for the foods we might eat at home.

For charts specific to each restaurant, with full nutrition information on various places from a one-stop, go to the following website.  Click on the restaurant. To see the nutrition chart that enables you to see all the numbers in one screen, click on the Nutrition Chart button on the main page for the restaurant.  Plan for plenty of scrolling…and shock.

**My chart is better, so please check it out first before you get distracted in the website.


FAST FOOD RESTAURANT SODIUM MG Notes or recommended exclusions.
Hamburger 480
Cheeseburger 680
Fish Filet 590
Grilled Chicken Classic 820
Snack wrap w grilled chicken 650-670
McChicken 800
Yogurt parfait 70
Salad Southwest chicken w grilled chicken 650 The nutrition chart shows 340 for the Southwest dressing. It is not clear if this is already part of the 650 mg.
French fries – small 160
Smoothie 40-50
Egg McMuffin 780- ( 800white only)
Sausage Burrito 790
Oatmeal 115-160
Chicken tenders – 3 pcs. 770
Cheeseburger – double 820
Turkey Burger 930
Roast Beef – Regular 850
Cheeseburger – small 710
Hamburger – small 480
Mashed Potatoes 410
French fries – kids nat cut 450 (included to show the high content for the smallest serving)
Side salad, no dressing 160 (must be for croutons)
Cinnamon Raisin Biscuit 680 (300 cals and 15 g fat)
Pancakes (3) 830 (300 cals, 5 fat)
Hash Rounds -Small 360 (250 cals and 16 fat)
Hamburger 610-840
Dbl cheeseburger 920
Grilled chicken sandwich 860
Roast beef 800
WENDY’S Sodium
Hamburger, junior 600
Cheeseburger, jr. 800
Deluxe junior 830
Ultimate Chicken Grill 880
Chicken, crispy go-wrap 910
Chicken, grilled go-wrap 740
Chili, small 790
ARBY’S Sauces add from 160 (horsey to 720 (buffalo dipping sauce for chicken tenders)
I usually include only the items that are below 900.  I almost excluded Arby’s from the chart but decided to include it as more of a warning.  I love(d) this place.  Now it is on my “forget it” list. Bummer.
Salad dressings add 230 (Hon Must) to 750 (Lt Ital)
Curly fries are the highest in sodium among the mg on fries at various restaurants.
Roast Beef Classic 970
Chopped Farmhouse Salad w Turkey 780
Snack n Save Jr. Roast Beef 530
Other Jr. Size over 800
Breakfast sandwiches are all off the charts.
SUBWAY Many variables depending on toppings.  If you add mayonnaise, pickles, etc., the numbers will increase.
Oven Roasted Chicken 6” 610 via Subway’s website using Calculate Yours, customized at right. Flatbread or 9-grain Wheat, Swiss cheese (the lowest sodium chs); olive oil blend, lettuce, tomato, green peppers
Turkey Breast 6” 670 (same all)
Harvest Chicken Salad –*Small Only* -with my own (Newmans Rasp Vin Light) dressing – 480 Salad only (starts with honey-dijon chk salad…perhaps ask for plain??)
Acai vin dressing 320
Chili – small 550
CAPTAIN D’s NOTES:  Exclude fried items.  Skip or reduce cocktail and tartar sauce.  Watch the sides (below)!  Do not eat the rice.
A winner!
Grilled salmon 392
Seasoned tilapia 488
Grilled shrimp skewers 344
Stuffed flounder 589
Grilled shrimp 570
Grilled chicken 718
Wild salmon salad 539
Watch the sides!   Baked potato = 539, Green beans = 627, Seasoned rice that comes with grilled items automatically = 500+
Broccoli 20
Corn on the cob (before butter) 0
Breadstick 149 Just eat half!
Side salad 67
TACO BELL Go very light on the taco sauce, Perhaps ask for cheese on the side.
<<This is true of dining out at other Mexican restaurants.
The only option is a SOFT TACO:  Supreme 350 / Chicken 480/ Beef 570 / Steak 630
The 3 Chicken Wraps range from 710 (crispy flamethrower) to 760 (grilled) Calories range 290 and 15 fat (grilled) to crispy flamethrower (370 and 22).
Original Cheeseburger 930 380 calories, 19 g fat
(reduce by asking for no cheese (200 mg diff.) and condiments on side. The mushroom swissburger is slightly lower
Hot Dog, regular 750
footlong 1300
Ice cream treats
Cones, not dipped Range from 70 (kid-size) to 200 (large) Calories range from 70 to 130.
Dip them, and add 20.
Sundae, hot fudge, range by size 135-280 Calories 300-610
Blizzard, mini, lowest is Hawaiian to highest Oreo Cookie 125 to 280 Cals  300 to 380
Dilly Bar 75 220 cal
(Italian Cuisine fast food)
Lite Baked Spaghetti 500
Chicken Mshrm Alf Bake 1100 I’d only consider for dinner…
**PIZZA*** 1)  A key factor for pizza is the crust.
2) Generally, the more meat and cheese, the thicker the crust, the higher on sodium (and fat and calories).
Our usual pizza source for pick-up   (it’s take and bake) All are Large, based on 1/10th of the pizza.  **Except where noted, these are cheese pizzas.
My family’s favorite.
Pepperoni (De-Lites crust) 300 Compare to Original crust at 706
Cowboy (pep, ssg, blk olv mushrm) (De-Lites crust) 409 Compare to Original Crust at 851 mg
**  REMAINING PIZZA PLACES, READ ACROSS – Comparison of  14” CHEESE THIN / REGULAR (Hand-Tossed) Crust 1/10th of a pizza**   (shown Thin / Regular)  For more details – http://www.healthaliciousness.com/articles/pizza-least-salt-sodium.php
Domino’s:  194 / 509 Little Caesars Pizza Hut  594 / 631
218 / 404
Papa Johns:  461 / 678 Papa Murphys
202 / 565
GENERAL – Dining out (Appetizers) -Soup
(or at home) -Fresh fruit and vegetables -Crackers
-Unsalted nuts -Cheese dips
-Dried fruits or banana chips -Cocktail sauce
-Swiss or goat cheese -Meatballs
-Feta, brie, and most other cheeses
SALADS -Tossed greens -Three-bean
-Carrot/raisin -Anything mayo-based
-Gelatin salads
Dressings -Vinaigrette, or oil and vinegar -Creamy (ranch, french)
-Zesty Italian
Toppings Veggies, egg Bacon bits, croutons
MEXICAN Ceviche Salty chips
Grilled fish or chicken Cheesy dishes, like enchiladas and quesadillas
Request sauces on the side Beef or chicken tacos or tostadas Burritos
Ask that cheese not be added to your meal Corn tortillas Beans and rice
Substitute corn tortillas for flour Fresh salsa or pico de gallo Chorizo (Mexican sausage)
Guacamole Flour tortillas
ITALIAN Pastas with marinara sauce Antipasto platters
Pasta/fagoli or marsala dishes Cheese or cream sauces
Primavera Adding grated cheese
Piccata (hold the capers) Breads and rolls
Oil and vinegar dressing
Italian ices
ASIAN -Steamed rice -Lo mein or chow mein
– Steamed or stir-fried dishes with vegetables
Leave sauce on the plate -Bean curd or tofu items -Deep fried or battered dishes (tempura)
-Sweet and sour,
Ask for no MSG chili, or garlic sauces (although still high these have the lowest amounts) -Black bean, hoisin, plum, fish and oyster sauces




Sodium Restriction – A Challenge

The First Challenge at Home – Eating

I came home from the hospital on January 2, 2014.  The first week home was quite challenging.  An oral thrush infection had begun in the hospital, I guess my bacterial balance was off due to the antibiotics.  My tongue was starting to hurt, avoiding sugar and bread are recommended to prevent the thrush, a yeast, from getting worse. Canker sores appeared on my lower lip. It hurt to eat Raisin Bran.  I got a prescription of Nylastatin, I popped some garlic and acidophilus pills, and I ate yogurt.  On January 14, I was able to say that my mouth felt fine.  Thank you, God!

Worse than the thrush problem was the realization that, permanently, I must now follow a low-sodium diet.  I have always watched calories and fat, I am not one to be heavy on the salt-shaker, and my blood pressure is always well below the 120 on the top number, even without the medications I was prescribed.  Do I really need to stay under 2000 mg? What the heck can I eat?  This is a new ballgame.

I lost my appetite for awhile and added Boost to the short list of things I consumed.  The first week I saw the scale drop 12 pounds, due additionally to diuretics like Lasix and spironolactone, and to loss of muscle mass.

I learned quickly the impact of restricting my sodium.  I normally have a hard-boiled egg as part of my breakfast, for a little protein, with a little salt and pepper.  Salt from the shaker is a no-no.  Not that I use a teaspoon of it at one time, but a teaspoon of salt contains more than the day’s limit of sodium.  That tells me I should not use it, period.   An egg without salt is incredibly bland.

I had often alternated Egg Beaters with the hard-boiled eggs. Less fat and calories.  Of course, it has sodium.  The original variety has 90 per 3 TBSP.  Egg whites have 75 per 3 TBSP.  I have been mixing one real egg with the one serving of Egg Beaters, and sprinkling Mrs. Dash Table Blend.  Not too bad.  It is okay on an hard-boiled egg as well.  I have read on forums that sage, thyme, garlic, and hot sauce are tasty alternatives on scrambled eggs.  Note that hot sauce has its own sodium.

**Check out my links on the home page, currently on the right margin.  I added a few links regarding sodium, and I plan to keep adding sites about sodium and dilated cardiomyopathy.


On January 16, when I decided to get out of the house and accompany my husband to the veterinarian (30-minute drive) for a 6 pm appointment, I knew we had to grab dinner at a fast-food restaurant.  I looked up the content for various establishments.  I found a website with links to multiple places; I cannot find that site now.  I scribbled down the lowest items.

The information useful for that first dinner experience allowed me to choose between McDonalds and Arbys.  Having counted my sodium all day, I still had 1000 mg available on a 2000 maximum.  McDonald’s offered:  Fish filet at 590, grilled chicken classic at 820, a hamburger (the small one) at 480 or cheeseburger at 680 mg.  Wow, the cheese makes a 200 mg difference.  A  yogurt parfait, which I usually substitute for fries anyway, has only 70 mg.  Since the only item at Arby’s* that looked filling enough for dinner was the Roast Beef Classic at 970 mg, we went to McDonald’s.  I ordered a hamburger with no toppings*, I used just a little of a ketchup packet, and enjoyed a yogurt parfait.

*Pickles are high in salt, so it helps to exclude them.  Mayonnaise (110 mg/2 TB), ketchup, and mustard add sodium, too.  I don’t like pickles anyway, and the other condiments I like to keep light as well.  Not much of a sacrifice.   I do like Arby’s, so I am bummed out about their lack of options. Their lowest sodium salad (Chopped Farmhouse with Roasted Turkey) was at 780 and I did not feel like eating salad as you don’t know how much meat they include.  Maybe if I took my own salad dressing it would’ve been do-able.  Arby’s lowest salad dressing is at 230 (honey mustard).

 The plan for some posts in the near-future:

I am working on charts to list the lower sodium options for some fast-food restaurants, general tips about dining out, and sodium content I’ve noted for eating at home.  I want to have something neat to put in my purse as reference when I dine out.  I love to share helpful information with others, so I will be posting the charts when I am finished.  I hope it helps someone like me; I have not found one website that has everything, and I won’t bother with the higher sodium foods.  I will have one post for the dining out information and another for eating at home.  It may be more broken out that that, as I don’t want something super long that requires lots of scrolling.

I love the Bible and there are so many verses that I try to apply to my life and which comfort me, remind me of God’s love, faithfulness, and goodness and keep my worry level to a minimum.  Today I have started signing off with Scripture, so here it is for today:

..but those who hope in the Lord renew their strength.  They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint.(Isaiah 40:31)

Isaiah 40-31



Earlier Symptoms and Misdiagnosis, Part 2

continuation of topic from previous post

The first two symptoms were covered as I described how I was misdiagnosed as having asthma.

  • Crackling sound in the chest (a sign of fluid buildup)**, heart murmur, or other abnormal sounds
  • Shortness of breath during exercise, while lying down or having been asleep for awhile.**

My experience with some of the remaining symptoms (bold and ** are those I experienced).

  • Swelling of feet and ankles (in adults) **
  • Reduced cardiovascular capacity **.
  • Irregular or rapid pulse**
  • Chest pain or pressure (more likely when you exercise)
  •   Cough
  • Fatigue, weakness, faintness
  • Loss of appetite
  • Swollen lower legs.  Despite doing calf raises, my calves never developed any definition.  They have looked big ever since I can remember.  I figured that was just the way they were made. 

 For many years, sitting down for long periods of time often caused my legs to feel heavy and uncomfortable, despite my regular exercise.  I had visited my family doctor last year to make sure there was no circulation problem.  Apparently they were not swollen at the time or he did not pick up on it.  I am finding a new family doctor.

 Fluid retention never crossed my mind.  I did not consider that my legs were actually swollen.  My heart was (is?) not strong enough to push all  the blood up away from my lower extremities.  The diuretics Lasix  (furosemide) and spironolactone are among my medications, and I can now see the difference in how my lower legs should have looked.

  •  Reduced cardiovascular capacity.

As I have mentioned previously, I have been exercising for 5-6 days a week,  twice a day for 20-35 minutes each session, for 6 years.   Treadmill,  elliptical, bike, jumping jacks and other “boot camp” type moves, Zumba and other dance, swimming, yoga.  I had taken daily walks before that and done just enough squats and weight training to deal with my legs feeling uncomfortable from sitting down on my desk job.  I was never able to build the kind of endurance that would enable me to run for any length of time, but I had gotten to a point in the first year that I could run on a treadmill for 2 minutes at 5.5 to 6 miles per hour.  I was jogging at intervals on my walks with my two black labs.  I could take 3 flights of stairs at work and not be out of breath.

 At some point, possibly 3 years ago, I found that I could not endure running or jogging or high cardio.  On a treadmill, 4.2 mph was my normal speed at an incline of 3.  I went to my family doctor, as it did not make sense to me for my cardiovascular ability to be reduced.  I did have allergies and sinus inflammation that make it more difficult to move air through my nasal passages.  Perhaps there was now more inflammation or another polyp.  His thinking was along the same lines, so he sent me to an ENT.

 The ENT listened to my heart, as my family doctor had done, and it sounded good.  My blood pressure was good.  He concluded that I had a small nose, small nasal passages, and that I should try using Breathe Right strips.  As a last resort, if I truly wanted to, I could have a surgery that would enlarge the passages.   I tried the Breathe Right strips, and I consistently sweated them off.  Oh well, I guess I will just have to accept it.

 My cardiovascular capacity evened out for awhile. 

In early 2012, hip and knee pain led to a diagnosis of osteoarthritis in those joints.  Physical therapy, a farewell to jumping jacks and other high impact exercise, and 500 mg Naproxen relieved my pain.  I began using a stationary bike, and swimming occasionally, to include no-impact exercise in my routine.   

 In April 2013, it was determined that my right hip needed to be replaced, and I had the surgery* on July 22 of that year.  When I tried the treadmill 3 weeks later, I could only go 3.5 mph.  I thought it was due to not pushing myself as hard for awhile due to my recovery.  I did not yet have the other symptoms that led to a misdiagnosis of asthma, which I covered in my previous post.

 *Regarding hip replacement – I had an anterior incision performed by a doctor who is on the top 100 in the U.S.  His name is Dr. John Clohisy, for Washington University Physicians, St. Louis MO.  Often people have a posterior incision that requires a longer, more difficult recovery.

  •  Lastly, irregular or rapid heartbeat is something I’ve experienced for many years. I have had instances some years ago but not in the last couple years when I lied down at night and could not sleep for the awareness of my heartbeat. Anxiety from a day of work and chores at home?  Or was it the beginning of my heart condition?  I had one day at work when my heart was beating unusually quickly nearly all day.  I had read that heart palpitations were not uncommon during the approach of menopause, so I did not worry about it too much.  Now I wonder.

 I think back about all these little signs.  Is there something I could have done to push concerns with my doctor?  I don’t know.  They each came on separately over time. 

 One thing I never experienced was persistent fatigue or sleepiness.  I was accustomed to sleeping 6 hours a night, so I could rise early and get in my exercise and the dogs’ walk.  Sometime before my diagnosis, I was falling slightly short of those 6 hours due to getting to bed 10 minutes or so later than usual.  Most days I was fine.

 I do wonder about my use of 5-Hour Energy. I kept a bottle handy in case I really needed it, which recently was twice a week.  Before that, maybe once a week, if that. When I told one cardiologist that I drank a half-bottle occasionally, he frowned quite a bit and told me to never take it again. 

 In my next post I plan to share information I have gathered about sodium. 

Symptoms of Congestive Heart Failure and a Misdiagnosis Months Earlier

Note:  You may find references to heart failure or congestive heart failure in my writing.  I was scared when a nurse mentioned giving me a brochure on “congestive heart failure”, which sounded like a death sentence to me. It is actually a general term that refers to the heart’s failure to pump an adequate amount of blood.  This leads to a buildup of fluid in the lungs and surrounding body tissues.

Symptoms of Congestive Heart Failure and a Misdiagnosis Months Earlier

 There must be a good reason for the medical profession to do the tests that led to my diagnosis.  I was at the emergency room for symptoms of fluid in my lungs and in my liver.  I did have pneumonia, but other issues caused them to do further testing.  I was in the hospital for 8 nights.

The doctors and I were trying to estimate how long I have had dilated cardiomyopathy (DCM to abbreviate).  Often it starts out with no symptoms and then progresses.   Sometimes the signs start suddenly and severely.

Below is an overview of symptoms of heart failure 

I will elaborate partially on my personal experience further down and in my next post. What I experienced is marked **, and I have listed my most recent symptoms first.

  • Crackling sound in the chest (a sign of fluid buildup)**, heart murmur, or other abnormal sounds
  • Shortness of breath during exercise, while lying down or having been asleep for awhile.**
  • I’ll add, for my case, reduced cardiovascular capacity**.
  • Swelling of feet and ankles (in adults) **
  • Irregular or rapid pulse**
  • Chest pain or pressure (more likely when you exercise)
  • Cough
  • Fatigue, weakness, faintness
  • Loss of appetite

 A Misdiagnosis of Asthma (August-December 2013)

I was three weeks into my medical leave recovering from a replacement of my right hip.  I was lying on my back around 4:30 am returning to my bed from a visit to the bathroom. I could hear in my chest a sound like someone was crunching up paper.  My breathing was shallow but I was not struggling.  I propped myself up with pillows and eventually went back to sleep.  This kind of thing sporadically continued in the early morning hours.

I was not sure what wheezing sounded like, but I didn’t think it sounded like a crackle.  I did listen to the breathing sound through my mouth, and it did sound like a whistle, sort of.  I did some reading on asthma, and I was convinced that’s what I had.

I went to my family doctor on the first day I returned to work, September 3rd.  I described my recent symptoms.  He diagnosed me with asthma.  It made sense at the time.  I had allergies, perhaps being home all day I was exposed to more allergens, my son had moved back in with his cat in May, so perhaps those things had triggered full-blown asthma.

The Dulera broncho-dilator seemed to work….until mid-October after I sat by our firepit and the problem started up again with effects during the following two days.

I was put on prednisone for the next 7 days, and the breathing problems and sounds disappeared.  I did experience unusual fatigue and depression on the last day of prednisone, a Saturday.  I was then awakened in the middle of the night by the crackling and breathing difficulty again.  I tried to sleep in a recliner.  I was also coughing.  My heart was pounding so hard it felt like it would come out of my chest.  This eventually subsided.  I did not go back to sleep until late morning.

I live in a community surrounded by farmland and woodland, the combines are kicking out all kinds of allergens, people can burn leaves in my community.  At my office visit to our family doctor on Monday, we discussed how the fall would be a rough time for my “asthma”.  Let’s see how I feel after we have a good freeze and all the junk is out of the air.  This seemed reasonable.  He prescribed the generic form of oral Singulair.  I thought I needed a rescue inhaler, but he never offered it, and I didn’t ask, I don’t know.  The Singulair seemed to be helping.

Looking back, I regret that I did not take more charge of my healthcare. I received from a friend with an asthmatic husband the contact information for a pulmonologist and an allergist.  After some mild problems in early December, I kept telling myself I would contact the pulmonologist, and I never did.  Since the medications seemed to work most of the time, I guess I did not see an urgency.

My whole heart ordeal revealed that I DO NOT HAVE ASTHMA.   Yes, I am planning to get a new family doctor soon.  I can understand how asthma would be an easy diagnosis, I had no family history of heart disease, and I follow a healthy lifestyle, so a heart problem seemed like a longshot.  I think the biggest thing he missed is that the noise in my chest was a crackle – not a wheeze.

 Reading my report from the hospital again, it mentions bilateral pleural effusion, which is fluid on both lungs.  I had pneumonia only on a specific lobe of my right lung.   Wow, this was building for awhile.  Hence, the crackling.

Despite my consistent exercise, I had noticed over the last few years that my cardiovascular abilities had decreased during exercise.  I had other symptoms as well.  I will write about that in my next post.


Pneumonia and a Shocking Heart Diagnosis

On December 27th, 2013, I was diagnosed with a heart disease called dilated cardiomyopathy. 

There is no history of heart disease in my family.  I am 51 years old. I’ve had a healthy diet for most of my life.  I’ve been committed to exercise 5-6 times a week, beyond a walk, for 6 years.  I exercise for 25-35 minutes early in the morning before work, and on my work break in the afternoon I go to our onsite gym for 30 minutes to use the elliptical, or I walk outside. Even after I lost 25 pounds and am at a healthy weight, I have to do it or my body does not feel good.  I have never smoked.  I drink infrequently. 

I never imagined that I could have a heart problem. I know a healthy lifestyle does not guarantee any problems along the way, yet it was the most shocking news of my life when I was told that my heart was enlarged and weak.  Several of the medical personnel referred to it as congestive heart failure.  The official name is idiopathic dilated cardiomyopathy.  I’ll elaborate later in this post.

The Initial Path to the Diagnosis

Christmas Day was uneventful until late evening when I experienced symptoms that sent me to the emergency room. My two boys, Alex, 25, and Ross, 28, were home for most of the day.  We don’t exchange gifts.  (The weighted boxing gloves and punching bag my husband had ordered for me had not yet arrived.)  We enjoyed Italian beef sandwiches and various appetizer foods leftover from the night before, and we talked and watched TV.  It was a nice break from work schedules.

I normally would have exercised that morning on the stationary bike and done dance or aerobics moves or strength training for an hour. This day I had decided not to exercise, though I walked with my husband, Mitch, and our dogs in the morning and evening for 20 or 30 minutes.  After we returned from the evening walk in the cold weather, I was laying flat on the carpet while I talked to my parents on the phone and began moving through some floor exercises that are therapy for my right hip, which was replaced in July, and for the arthritis in my left hip and knees.  Keeping all my leg muscles strong is important and the exercises have prevented me from having hip and knee pain. 

I had started having a pain in my right shoulder blade and the top of my shoulder.  I thought I had overworked those areas during my upper body workout the day before.  I decided to take a hot bath. 

At some point at the end of my bath, I felt weak and began having trouble breathing.  I had been diagnosed with asthma in early September, but it was primarily controlled through a broncho-dilator and the generic form of Singulair.  I thought I was having an asthma attack.  Sharp pains began to affect the top of my shoulder, the shoulder blade, and now the back of my rib cage.  I was afraid that I could not get myself out of the bath, but I knew my family would not hear me with the bathroom and bedroom doors both closed and the TV on.  I got myself out of the bathtub, threw on a robe, and leaned against the sink while having trouble breathing and with my chest feeling some pressure.

I walked out to the living room and told my husband, Mitch, that I thought I needed to go to an emergency room.  By this time it was close to 10 pm.  He had to work the next day, and my son Alex was on medical leave for a sprained ankle, so Alex drove me to the hospital.  (Ross was out visiting a friend.) 

As I had dressed for the hospital, I was hyperventilating.  The pain kept on, too, and the 25-minute drive to Alton Memorial felt like an hour.  After we arrived, I was seen immediately. 

A chest X-ray revealed fluid on my lungs (pleural effusion).  Pneumonia.  I was hooked up to various machines, including an IV for antibiotics.  I was able to slow down my breathing a bit and answer some questions.  I was given a breathing treatment.  I had a mask over my mouth and nose, and I had to breathe through my mouth.  I could not breathe correctly.  The beeps and lights on the machines, and the mask, were giving me anxiety.  My  breathing was quick and shallow.  I could not take a deep breath.  After what seemed an eternity, the time was up.  Another Xray or CT was taken to look for a blood clot in my lung.  Fortunately, it was clear.  I was given something that made breathing easier and made me sleep, blissfully. 

At some point during all of that, I told Alex he could go home.

When I awoke in the ICU the next morning, Mitch was there. 

Blood had been withdrawn here and there. Strep-pneumonia was in my blood. Alex was diagnosed at the doctor with bacterial pneumonia just 5 days prior, so it made sense.  I probably caught it from him.  Later on, I thought it was strange that it came on me so suddenly.  I had not been coughing or feeling ill.   I learned that the pneumonia ultimately saved my life.  It was the effects of the pneumonia that brought me to the hospital and revealed an underlying, life-threatening heart condition.  Thank you, Lord, for the pneumonia.

During evaluations and diagnostics, it was found that my heart is enlarged and weak.  The cause was not yet known so I needed more tests.  I was scheduled to have a catheterization the next day.  A tube was run through my groin up into my heart to detect any blockage.  There was no blockage.  At the same time, they would do a transesophageal echocardiogram (TEE). 

The TEE involved spraying my throat with anaesthetics, a sedative that kept me barely awake and not remembering the actual procedure, and running a tube down my throat.  I remember the tube, and I hope to never do this procedure again.

The final heart diagnosis is dilated cardiomyopathy.  My left ventricle has more space in the chamber than it should.  The walls are stretched and thinned out.  My mitral valve is allowing some blood to go back in the left atrium (regurgitation).  The valve problem likely was caused by the stretching of the ventricular walls.

The cause of my condition is unknown.  My blood pressure has always been good and on the low side.  We don’t know when it began.  Often there are no symptoms in the beginning.  See my next post regarding symptoms.

 Ejection fraction is a measurement of how much blood the left ventricle pumps out with each contraction.  An ejection fraction (EF) of 60 percent means that 60 percent of the total amount of blood in the left ventricle is pushed out with each heartbeat.  A normal range is 55-60. 

 A measurement under 40 may be evidence of heart failure or cardiomyopathy. 

My EF was 15 percent early in the hospital stay.  (I don’t know what it is as of today.  I will find out on 2/14 when I have another echocardiogram.  Barnes Hospital can do it without sticking a tube down my esophagus.)


Additional Procedures and a Second Hospital

The pain in my shoulder and shoulder blade made sense with the fluid in my right lung.  It did not explain the pain in my rib cage that was now present in the front as well as the back.  Tests revealed fluid around my liver.  There was a concern about my gall bladder.  A diagnostic showed that my gall bladder and liver functions were normal.   The fluid was a byproduct of my weak heart. 

 All this time, my blood pressure has been low. 

 About a pint of infected fluid was removed from my right lung through a needle guided by CT scan. The fluid had formed pockets, though, and they could not remove all of it.

A drainage tube was recommended to remove the remaining fluid.  Alton did not have the specialists to perform the procedure to install the tube.  On New Year’s Day I was transported to Barnes-Jewish Hospital in St. Louis.  After I arrived, their team did not believe a drainage tube was the next step.  The pneumonia was nearly gone.  The fluid was there due to my weak heart, and water pills (diuretics) would remove it.  We needed to focus on how to proceed with my heart issue.

The Treatment Plan and Going Home

 Both the cardiologist working with Alton and the one working with Barnes recommended medications to strengthen my heart.  We will try that first for awhile and see if it works.  I was on these medications while at the hospitals.

I was released on January 2, 2014, the 9th day from the first day I went to the hospital.

I was sent home with a Zoll LifeVest, a wearable defibrillator.  It is slightly larger than a bra, with electrodes and sensors that connect to a defibrillator that I must carry on a strap or hook to a belt.  I must wear it for 12 weeks.

I have been on medical leave from my office job and hope to return to work on March 3rd

 ***In my next post, I will share symptoms of the heart problem that I experienced much earlier I (months and years ago), and how I was misdiagnosed as having asthma.