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KimC

Hello,

It has been a long and difficult week with many conversations re: my cardiac MRI and diagnosis.

The good news is that my EF is normal (but seems a little high at 67%). Fractional shortening, volume, etc. also are normal. Translation: no overt heart failure. There is some evidence of right-heart dysfunction but it's a close call, according to my cardiologist.

The bad news is that not only the right ventricle, but the left ventricle is beyond normal dimensions. (When did all this happen?) My diagnosis is dilated cardiomyopathy.

In the past, I was told that aortic valve disease was a concern, but the latest is that microvascular ischemia is the root cause, not a floppy valve (although it's leaking 1-2). I think I mentioned this in one of my previous posts.

I'm still going to have another contrast bubble study but this time with a leg vein puncture to further investigate the significance of the shunt. I'm hoping and praying what's causing the heart enlargement is something that can be fixed and not "really" heart disease, so to speak.

The scar tissue they found on the MRI is unusual in that it's tiny but in several places. My doctor described it like a pin-cushion. He said in the past they wouldn't have been able to see the damage, and would've diagnosed me with "idiopathic cardiomyopathy." Today's cardiac MRI's are amazing in that they can present detailed pictures of the myocardium, the heart muscle.

Meanwhile, I have a question for anyone who has cared for someone with heart failure, or who has heart failure symptoms ... I have symptoms after large meals, exercise, etc. Typically, I rest. Now that I know I have a condition that can have symptoms of heart failure (this is still new to me), I'm trying to change my lifestyle habits, i.e., smaller meals, less sodium, etc.

Until I "get there," does anyone have any advice for me when I am symptomatic? For example, if I eat a piece of Pizza Hut Pan Pizza at 1,200 grams of sodium, I will palpitate for several hours. I'm not kidding. I thought it was a GI thing. I'll avoid the pizza, but what if I "accidentally" overeat or eat something bad for me and start to experience symptoms? Should I lay down, take more diuretic???

Thanks for your advice. As always, I appreciate the support of VR.com, and hope this email finds you well.

God bless,
 
Kim-

I battled with Joe's congestive heart failure for years and years. After much trial and error, we came to the realization that if he wanted to feel better, he had to stay VERY low sodium. And that was in addition to large doses of diuretics.

I am going to say this, and others may wish to dispute it, but I believe that keeping his diet as low as possible sodium-wise helped him to live a longer life, and kept him comfortable for many years.

I don't know what your diet consists of, but whenever you can lower your sodium, it would be a good thing.

Sure everyone can take handfuls of diuretics, but eventually, it starts to backfire and your kidneys rebel. So if you can avoid as much sodium as possible, then maybe you won't have to take so many diuretics.

Cooking a low sodium diet is a miserable pain in the tush, I admit. Everything has to be made from scratch, and delicious pan pizzas have to be homemade. For Joe, the alternative was discomfort, and you are saying the same thing.

You might be coming to the same realization that we came to years ago.

It stinks, but if it helps, it's a good thing.
 
Kim follow Nancy's advice. My kidneys are rebelling at this moment from all the diuretics I'm on. Just satisfy yourself that your going low or no sodium diet and see what happens.
 
Kim,

The no "overt heart failure" sounds like good news. But the advice from Nancy and Ross sounds wise as a precaution. As a type 2 diabetic, I have to watch the sugar and the carbs, but in the process I read food labels religiously and I am aware of the heavy amounts of sodium built into processed foods, which can't be good for us.

It is extra trouble to go low-salt (and low-sugar, for that matter) but the good news is there is a lot of information out there to help you. From a quick search, here is just one article I found on "Following a Low-Sodium Diet With Heart Failure." Hopefully you don't have heart failure, but I really think any of us with heart issues of various kinds need to control the sodium intake.

http://www.abouthf.org/module2/default.htm

Hope this helps. I wish you well.
 
Kim,

Sorry you are dealing with the confusing details. Hopefully you will have some solid news soon on what is really going on.

Be sure and drink plenty of water. I find I end up with kidney pain if I take my Lasix without consuming lots of water. In addition, the Lasix doesn't work as well without water (at least for me).

If you have symptoms, an additional small dose of your diuretic might help but you should run it past your doctor. However, as has been said, a low salt diet can be your best friend. If it is prepared food that you do not make yourself, it is likely to have more salt than is healthy for someone dealing with heart issues.
 
I hope you do not have heart disease and get answers soon!

When my husband was diagnosed with a ruptured chordae last year (no symptoms) he was so in shock that he told me he won't eat processed food again and he wants to cut all sugars and salt etc. We never ate that unhealthy anyways but I supported his decision and ended up spending 4 hours each day preparing meals from scratch:eek:

Now one year later our new life style has become a routine- I have invested in high quality blender, food processor and juicer which is very helpful and when I prepapre soups or veggie stews, beans (which have to be soaked overnight) etc. I make big patches and freeze the rest so you don't have to do it every day. We still love pasta but are buying Brown Rice Pasta from the Health Food store instead which is a much better choice. My husband rarely craves bread and pizzas but when he does I prepare those too and use healthier flours like spelt and kamut instead. I have no-knead bread recipe which is easy to make. We love all our meals - it's not boring or bland - the natural flavours of veggies and spices and herbs are delicous. We also add 'Bitters' to salads like endives, Radicchio and dandelions. Especially dandelions are good for kindeys. For Christmas and Birthdays however, we still eat a devine dessert although a smaller piece.:)

My husband never had palpitations but coffee gave me terrible ones so I had to give up my French Press (I am not even the heart or valve patient). When I had them I usually 'converted' myself with drinking water and walking.

When we go to a restaurant or friends and my husband thinks he had too much salt intake he 'counters' it with potassium, like a banana, a pomegrante or a Low sodium V8 juice. He is not on any medications but if you are on ACE inhibitors you have to be careful with Potassium intake. If you are on meds it would be better to speak to your doctor or dietician. If you just ease yourself into making better choices, bit by bit, than it won't be so overwhelming.

All the best
astrid
 
Thank you everyone from the bottom of my heart!

Nancy, I was hoping that you would share your experiences with Joe. How LOW did you try to keep his daily sodium? I'm just starting to check nutritional data on foods I consume.

Ross, I hear you re: the toll of diuretics. I'm trying to adapt a new lifestyle but there's a very unhealthy tendency that I have to rebel. To be honest, this will be my biggest battle for the next several weeks. I've made "peace" with the implications of my symptoms.

On Friday night, I ate a heavy meal with sodium and experienced strong and rapid tachycardia for two hours until I coughed vigorously (I was at the point of heading to the local firehouse or driving myself to the ER; my family wasn't home). Thank God the trick worked. The experience, however, was a wake-up call because my coronary spasm started out like that several weeks ago: prolonged palps, then flushing and voila! I was on the floor.

Some people can quit bad habits cold turkey when faced with grave health consequences but I'm not one of them. The habit isn't smoking or cocaine or anything really terrible ... it's simply American "fast" food like pizza.

I've committed to quitting Pizza Hut after reading the sodium values online, (pan pizza really is 50% of your recommended daily sodium). I quit Starbucks expresso, and now just need to be careful not to let myself get so hungry that I can "justify" fast food meals.

I won this battle yesterday when my family was at a golf tournement eating hot dogs and beer ... I drank water and felt sooooooo much better later than I did on Friday night.

I think I'll take it day by day.

I'll let you know if the shunt is a factor in the condition. Fingers crossed.

All my best,
 
Kim-

Regarding Joe's sodium limitations, it was extreme. It was 500mg per DAY or less. VERY hard to do, but believe it or not, I was able to find workarounds for just about everything and he did have delicious meals, even he thought so, and I liked them as well. You may not have to go that low. You CAN make your own pizza at home and have it be more healthful than what you can buy. You CAN make your own Italian and breakfast sausage, not too hard with a food processor. You CAN make your own breads and other pastries. There are low sodium products available online. You can go out to eat and ask them to prepare your things without salt. Sometimes they can and sometimes they cannot. Of course, fast food restaurants have their food pre-prepared, so asking for low sodium there is useless.

Do you like to cook?
 
Goodness, Nancy, how did you ever manage 500 mg? On most days we are on 750 mg and I don't see how I possibly cut could more if it were necessary.
In our case we are just following a high potassium/low sodium diet to keep the BP low naturally and it seems to be working. High Potassim intake, I believe, can be a problem though with certain meds and kidney disease.

Kim, change is hard! It's easier on your body not to do it drasticly anyways IMO - I had to sneak several sweets in the beginning:)

All the best
astrid
 
Astrid, I had to buy a LOT of things online. But we managed. Online, I could buy low sodium baking powder and soda which made a BIG difference. In the market, there was only the stuff with potassium in it, and Joe couldn't have potassium type substitutes. And I found some great cooking sauces with no sodium online made by Mr. Spice. Those were delicious and helped so much. The Healthy Heart Market is another terrific resource online. We even had a restaurant locally owned by a gal whose husband had congestive heart failure, and she would make no sodium meals for Joe. And I found a little deli which which made their own sausage, and if I bought about 5 lbs. of it, they would make it without salt for Joe and I could freeze it. Most market bread was out, but there are Italian breads which contain no salt, sometimes called Tuscan bread.

There wasn't too much that Joe missed as far as eating different things, it just had to be made at home, like the good old days. I even made a bologna-type summer sausage that was quite tasty.

There really was no other choice. Either that or I watched him slowly drown in his own fluid. I couldn't do that, and he didn't want to feel that way either.
 
Kim - I get a fast HR sometimes if I have indigestion. Just another thought. Could be the salt issue, but do you also experience the feeling of being too full?
 
If you make your own pizza, you can use "fresh" mozarella which has about half the sodium of regular mozarella. And Heluva Good Cheese makes a delicious cheddar with very low or no sodium, but has some potassium. I don't know if you get the Mrs. Dash brands of spices up there, but they have a large variety and also now have some really good marinades.
 
Thanks for the tip about cheese!! So far I have only made seafood pizza so I could cut out the cheese because of the high sodium. I tried to buy Soy cheese but the sodium was even higher! I'll check if I can get Mrs. Dash.
 
In the Quebec supermarkets you can buy "no salt added-Table Shake seasoning" made by McCormick. Imported from USA. It is fantastic!! (Dehydrated onion, veggies, garlic, lemon etc.)
I'm sure there are others too.
I have BIG problems with salt making my heart race....we cook from scratch.
I hope my heart is okay, I thought it was just because my BP meds were wearing off by dinnertime. So I take 12.5 mg of metoprolol before my evening meal to stop the palps.
 
Thank you

Thank you

This is a great thread to get me started, thank you!

Nancy, I like cooking and have several cookbooks from the WomenHeart Mayo Clinic Symposium on Heart Disease that I attended last Fall. But in addition to cooking, my husband and I hired a personal chef who cooks heart-healthy meals. It may sound glamorous, but if you recall, I live in a retirement community, so his services are popular enough to make them affordable for our entire family. He was on vacation for two weeks, however, and that?s when I began eating fast food and feeling symptomatic again.

Karlynn, thank you for your thoughts ? I can't be 100% certain that the symptoms are heart-related but I?ve had them on and off over 3 years after high-sodium meals, and I've had tests for diabetes, GERD, etc.?normal. I?ve worn a Holter twice to capture the episodes of a HR around 90-120. The weird thing is that the rate bounds for hours, not minutes or seconds. My cardiologist put me on a beta-blocker last year but I quit it due to the side-effects. I?ve asked him to start me up again on a ?baby? dose.

Thank goodness the rhythm isn?t something other than SVT.

This is going to be a challenge. I cooked heart-healthy pasta for lunch then poured on Newman's Own marinara sauce then looked at the sodium content: over 600 grams or 26% of the daily recommended number! I'm really beginning to notice the difference.

Warm regards,
 
It is very easy to make your own marinara sauce with little or no sodium.

You use Pomi brand Strained Tomatoes with No Sodium (made by Parmalat, comes in a box) add olive oil and garlic, basil and oregano and a little water. Let that simmer slowly for a while scraping down the sides of the pan and the bottom of the pan to mix in the concentrated tomato as it cooks, then when it has reduced a sufficient amount add a rounded TAB. of brown sugar and mix it in well. Add some hot pepper flakes to your taste.

If you have been good about sodium for most of the day, you can have a teaspoon of freshly grated Parmesan cheese (coarse grated). And you can have all the red pepper flakes you want, and a couple of fresh basil leaves for additional flavor.

If that is way too bland for you, you could make the above and cut in some of the Newman's Own for flavor, which would reduce the Newman's own sodium by quite a bit.

You can get some no sodium Tuscan bread and make your own garlic bread with no salt butter and garlic to have with it.
 
No insight or words of wisdom..............

No insight or words of wisdom..............

not holding back - just don't have any! :D I just wanted to send lots of hugs your way. We are keeping you in our prayers. J.
 
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