Posts Tagged ‘CHF’

Balance

November 14, 2010

My Congestive Heart Failure (CHF) is worse.

I think the problem is correctable. When I was having the Gout flare-ups a few months ago, my Cardiologist took me off of one of my Diuretics. One of the side effects is that it can cause Gout, and I haven’t had very many problems with the Gout since.

But recently I’ve noticed swelling in my ankles, a constant cough, and I feel run down most of the time. So I asked my Cardiologist for permission to start taking that drug again… every other day. That ought to be frequently enough to help me, without causing the Gout.

With a heart defect everything seems to be a balancing act. We discontinued the drug to keep the Gout at bay, but it seems that I’m feeling worse. So I’m taking it again – at half the dosage I was originally taking it. So if my self-diagnosis is correct and resuming the drug will straighten me out, it will take twice as long for it to work (since I’m taking half the dose). If it doesn’t seem to be the solution, I’ll have to talk to my Cardiologist again, and we’ll have to figure out a Plan B. And there is always that thought in the back of your mind: What if Plan B doesn’t work? Plan C might, but even if it works wonderfully, that’s one more option off the table.

Stay hydrated… but with your CHF, don’t drink more than 2000 millilitres (2 liters, or 67 US liquid ounces) per day. Normally that’s more than enough to drink, but what if I pick up a stomach bug that keeps me in the bathroom constantly? Then you can break the 2000 ML rule – but be careful! We don’t want to start having too much fluid in you. You also need to limit your salt intake to no more than 2000 milligrams per day. But when you get that stomach bug, Oral Rehydration will help tremendously… and Oral Rehydration is mainly (you guessed it!) water mixed with sugar and salt.

The goal is to try to keep everything in balance, to give your medications the best opportunity to help your body. If your doctor says to exercise, do so. (I’m one to talk! I have walked very little since hurting my knees in my July fall.) Don’t just fill a new prescription, question the doctor about the medication. What is it supposed to do? How will it help me? And what side effects should I look out for?

And be sure to ask the most important question: What can I do to help myself?

A new blog!

October 19, 2010

Mary Knudson is a health journalist, good enough that she has been a writer for The Baltimore Sun and teaches science and medical writing to grad students at Johns Hopkins University. Her new blog about living with heart failure opens with the sentence:

I got to know something about heart failure the hard way, by having it.

Heart failure affects millions of Americans, including me. The odds are that you (or someone you love) will have to deal with it, eventually. But as grim as it sounds (Oh my God, Heart Failure! My heart has failed!) it is survivable and you can live with it. Mary is – and she’s learned enough that she’s written a book, along with Johns Hopkins Chief Cardiologist. The blog is an offshoot of her book.

The first entry is a story that many Congenital Heart Defect patients and their parents are familiar with: a misdiagnosis and a roller coaster ride to figure out what is really going on. Mary’s heart failure blog is the feature today and will move into the blogroll tomorrow.

TELL HIM WHAT HE’S WON!

August 30, 2010

During my appointment in Atlanta I mentioned a problem to my doc – my legs have been hurting. I didn’t think it really amounted to anything…. I fell on July 22, and had not been on my walking program for fifteen days. I couldn’t: my knees were so badly bruised that I didn’t walk, I waddled. Imagine a penguin, that is what I looked like.

So when the bruises began to heal and my legs felt better, I started walking again. Short distances at first, because after a big layoff my body tend to “reset” and I have to build it back up. So I walked a short distance and I felt good. The same for the next day.

The third day I felt really good and just kept going. I walked over a mile! But the day after that my legs were killing me! Well that wasn’t smart, I thought. Too much too soon.

But my legs hurt every day – didn’t seem to be getting better at all. I had the fleeting thought that maybe hitting the floor had damaged something worse than bruises, but my main concern was that perhaps my Congestive Heart Failure was worse. Did my ankles look swelled? Yes they do!… no they don’t….. maybe. (I’m not really paranoid but my mind can run away with me occasionally…. can you tell?) So yes, if my legs weren’t feeling better, we’d certainly be talking to the Cardiologist about this!

So the day came and I discussed it with him. He seemed to think as I did – walked too much – but was concerned that they had hurt for so long. “After you are through here go by the lab. We’ll draw a blood sample to make sure nothing else is going on.”

So I went by the lab before I left and we came home. Friday afternoon I got a telephone call from the doctor’s office…. I have high levels of Uric Acid in my blood, which means a possible case of the Gout!

So tell him what he’s won!

You, sir, have won a prescription of Allopurinol!

*Sigh* Another drug…. and a few more dietary restrictions. No seafood, for example, but that’s not a big deal because seafood isn’t on the Heart Failure diet either. So I have to give up something I gave up eight years ago! Also, no cooked liver. That’s not a problem, I am not a liver lover! Gotta watch the fried foods, that might be a bit of a problem but I will figure it out.

And most importantly, we’ve figured out why my legs have been hurting!

No more heart transplants?

July 13, 2010

Will heart transplants one day be a thing of the past?

I think the answer is yes – one day. Not today, and certainly not tomorrow. But there are a lot of options being worked on that hopefully one day will help patients avoid a heart transplant. One of these we have discussed before: The Ventricular Assist Device, or VAD. The VAD is a small pump that is surgically implanted into the body and connects the ventricle to the Aorta. Technically, they can assist either ventricle, but the majority of them are connected to the Left Ventricle, the name “Left Ventricle Assistance Device” and the acronym LVAD are sometime used to discuss any variety of the pumps.

The LVAD was originally thought of as a temporary device to be used to assist a heart until a transplant organ became available, a “bridge to transplant” option. But the units have improved so much that today they are also considered as a permanent implant – “Destination Therapy” that will allow the patient to resume his or her life. With that viewpoint in mind, two important tests have recently begun.

HeartWare International recently won approval from the Food and Drug Administration (FDA) to test their LVAD system as a Destination Therapy device. HeartWare has plans to select 450 patients at 50 U.S. hospitals for the study. Patients must be in “end stage heart failure who have not responded to standard medical management and who are ineligible for cardiac transplantation.” Every patient enrolled in the study will receive an LVAD. Two thirds of them will receive HeartWare’s system, while the rest receive any other FDA-approved LVAD. The study is expected to last at least two years.

Meanwhile, World Heart Corporation is testing its new LVAD, the Levacor VAD. The Levacor VAD unit is being tested as a bridge to transplant only right now, but it is a pretty amazing little machine. The Impeller (a rotor inside the unit; the part that actually pushes the blood through) doesn’t touch anything – it is suspended in place by magnets above and below it. It turns smoother, and since it doesn’t rub against another part it should never wear out. And it is small, too – the unit is about the size of a hockey puck.

The drawback is that both LVADs require battery packs that are outside the body. Unlike pacemakers, no one has been able to implant a LVAD battery unit in the body yet. But I think that is coming, though I can’t predict when.

New gene therapy for Heart Failure shows promise

June 28, 2010

A new option for combating Heart Failure (or Congestive Heart Failure, also known as CHF) is showing promise as the CUPID Study

Heart Failure occurs with the heart muscle begins to wear out and lose its elastic properties. It isn’t a Congenital Heart Defect (CHD) itself, but a CHD can trigger it as a patient becomes older. And since I have CHF, I’m interested in keeping an eye on it!

The normal heart contains a protein that has a long medical name that I can’t say and can barely type. Thankfully, it is also known as SERCA2a. In a heart going through Heart Failure, the levels of  SERCA2a begin to drop. All is OK for a while, but it is like driving a car without ever checking the oil. You can take care of yourself, eat right, exercise, and write a letter to your mother every week, but if your heart isn’t producing SERCA2a then you’ve got a real problem on your hands. Eventually the CHF wins.

You can’t drink this stuff or take it in pill form. Instead, the gene that makes this protein is inserted into a virus. Not a virus that can make you sick, but acts as a transport mechanism for the gene. The virus (which in its commercial form is called MYDICAR) is inserted directly into the heart by catheter. In the study, there were 39 patients in total and the ones receiving the drug received low, medium, or high doses. And while there were no “adverse outcomes” the results were rather strange. Sometimes patients had the best response to lower doses of the enzyme. That really doesn’t make any sense.

It does look promising, if they can figure out why some people respond better to lower doses of the therapy. But this was a Phase 2 clinical trial studying a limited number of patients. We’ve got a few years to wait before this becomes available.

Tougher than a salt shaker!

June 10, 2010

Remember: Grand Rounds hosted on Adventures of a Funky Heart! June 15, 2010! Entry guidelines are HERE.

I hate salt.

Actually, I love a little salt; but salt doesn’t like me. I have Congestive Heart Failure (CHF), which is caused when the heart muscle weakens to the point that it has difficulty pushing the blood through the body.  Think of it like this: You buy a red rubber ball. Day after day you bounce your rubber ball – against the floor, toss it against the wall, ricochet it off the ceiling (I’m assuming you live in a house with unbreakable furniture!) and your rubber ball always works as designed. It always bounces just as high and just as well as the day you bought it. That rubber ball represents a normal heart.

Now imagine that you buy a red rubber ball and bounce it all day long. But as time passes, the ball doesn’t bounce as high as it once did. Either through some flaw in the manufacturing or a flaw in the rubber itself, your ball begins to lose its “bounce” and soon you have to toss the ball twice as hard to get it to bounce as high as it once did. That rubber ball represents a heart going through Heart Failure.

Since your heart can’t pump blood as well as it once did, you have to help it any way you can. One of the ways you help is to go on (and follow!) the diet plan. The diet has two rules: Consume no more than 2000 milligrams of sodium per day, and consume no more than 2000 milliliters of liquid per day. The 2000 milliliters of liquid isn’t that difficult to comply with – that’s a two liter bottle full of liquid per day. I have friends who drink a lot of water, especially when it is hot, and they may find it difficult to keep their consumption to under two liters per day, but for most of us it is not a problem. The problem is the 2000 milligrams of sodium.

How much is 2000 milligrams? A packet of Sweet’n Low contains 1 gram (1000 milligrams). So open up two packets of Sweet’N Low and pour the contents out on your counter. That’s how much sodium you are allowed per day.

You can cry now, I’ll certainly understand!

But you need to follow the diet plan that you doctor give you (your plan may not exactly be 2000 milliliters/2000 milligrams, it will be what your doctor feels is best for you) because you need to have to get the excess fluid out of you. Fluid makes you weigh more, and your heart has to work harder to get your blood through your body. Every pound you can lose helps your heart do its job better. So tighten up, we’re gonna fight this thing.

When you go to the store you are going to learn how to read a nutritional label. For the CHF diet, you are interested in two things: Serving size and sodium content. Both are clearly marked. Be careful – a common strategy to reduce the numbers is to reduce the portion size! So double-check that – can you really limit yourself to 2 ounces of chocolate? (My answer is “No!”)

You will find that many processed meats are no longer your friend. Soups don’t pass the sodium test very easily, either. And when labels brag about how they contain Sea Salt, your response should be “So what?” Sea Salt, Regular Salt, Moon Salt – they all contain sodium!

There are many salt substitutes available; Mrs. Dash is popular. I am not a fan of Mrs. Dash, but that’s just personal. it doesn’t appeal to me, but if you like it, enjoy it. You have to be careful with your salt substitutes – some of them replace the sodium with a little extra sugar, and some of them drop the Sodium Chloride in favor of Potassium Chloride. Some medications don’t mix well with Potassium, so read the label. I use Benson’s Gourmet Seasonings – it tastes really good, I recommend Table Tasty, their salt substitute, and Bravado, their chili seasoning. (And I’m not getting anything from Benson’s if you order, I’m just telling you what I like. You may find something else that appeals to you!)

CHF patients also need to monitor their weight. The best way to do this is after getting up in the morning, go to the bathroom and then weigh yourself. Do this before you shower or get dressed. When you are done, write your weight down and keep track of it day by day. If your weight goes up more than three pounds in a 24 hour period without an explination (birthday party, for example) call your doctor – you probably need a medication adjustment. Most likely you’ll be told to take an extra dose of diuretics (water pills) but the doctor may ask you to come by his/her office. Weight gain is usually a sign of fluid retention, and you already know that is not good for someone dealing with heart failure.

Fighting CHF will not be easy, especially at first when you are trying to get used to the new diet plan. But you can tough it out. After all, you are stronger than a little salt shaker, aren’t you?

“Low Sodium” Salt – coming soon!

March 24, 2010

A big announcement came out of a PepsiCo investors meeting yesterday – the company is working on a “Low Sodium salt.” Now I know a bunch of my readers just shouted “There ain’t no such thing!” at their computer screen, so I will try to explain.

PepsiCo’s new salt is designed differently. When you eat a potato chip, only 20% of the salt (if it is “normal salt”) dissolves on your tongue and gives you the salty taste. You chew and swallow before the rest of the salty flavor has a chance to kick in.

PepsiCo’s new salt is shaped and sized to allow more of the salt to dissolve in your mouth – consequentially, they can use less of it. This is also a part of PepsicCo’s plan to cut the amount of sodium in its food products by 25% over the next 5 years. The new low-sodium salt chips will be introduced in a few days.

This could be great news for those of us with Congestive Heart Failure (CHF). When the doctor tells you that you have Heart Failure and puts you on a low sodium diet, the snacks go out the window… at the very least, they have to become an occasional treat. A very occasional treat. Perhaps now we can have a chip or two without worrying if we are bumping into our daily sodium limit.

But this is Pepsico’s newest Secret Weapon (not only against Sodium, but all the other snack producers) so we don’t know what is in their formula. If it contains a lot of Potassium Chloride (a popular “Salt Substitute”, just replace the Sodium Chloride with Potassium Chloride) then it won’t do CHF patients any good. Potassium can affect any number of our drugs. And if you are on Warfarin, then you really need to avoid Potassium Chloride. Potassium is Vitamin K, which causes blood to clot. Warfarin reduces the ability of the blood to clot, and the two substances almost cancel each other out.

Reducing your salt intake is a good choice, especially if you have Heart Failure. It remains to be seen if the new “Low-Sodium Salt” is a step in the right direction or much ado about nothing.

We can fix that!

February 3, 2010

I keep writing about advances in cell therapy, cell transplantation, and cell replacement options that are coming in the future. You might think that this is all dream technology – the kind of ideas you have that always start with “Wouldn’t it be nice if…”

All this is exciting stuff, but it won’t be ready tomorrow. Medical research takes time – as much as you want something to work, you can’t rush it. I am sure that Heart Defect researchers know the percentages, they know that roughly 105 people per day are born with a Congenital Heart Defect (CHD) – but they also know that if they don’t get this right, they could inadvertently make a bad situation much worse. And sometimes “getting it right” means trial on human subjects. Early versions of the Fontan Procedure didn’t live up to expectations, but further research and study has made it into a better operation. Sometimes you just have to hold your breath and step into the unknown.

Since we don’t hear that much about medical research until something hits (or goes wrong), you may wonder who’s out there? How many companies are looking for answers? I can’t give you a total number, but a recent report, Tissue Engineering, Cell Therapy and Transplantation: Products, Technologies & Market Opportunities, Worldwide, 2009-2018, gives us some good information about tissue and cell research. The numbers are staggering: In the report, 148 companies are profiled (Click here for a list) and they account for a total of over $1.5 Billion US Dollars spent annually.

Whoa!

The report isn’t for “normal” people – it’s intended for corporations and foundations that might want to drop a spare million dollars or so into a research project but aren’t sure where to start.  (Of course, the only thing you need to obtain a copy of the report is $2,950!) Looking over the detailed table of contents is a real eye opener, it contains not only a list of companies working in the field but also worldwide research goals. There is not a research project titled “Limiting/Curing Congenital Heart Defects” listed anywhere, but CHD related projects are widespread. One of the major goals is combating Congestive Heart Failure (CHF) – Heart Failure often accompanies a CHD, and reducing or eliminating CHF will really cut down on some of the healthcare costs we all endure. More than half of my medication is designed to keep my CHF at bay. Another research goal is replacing heart valves, and a third is heart transplantation – issues that CHDers could very well have to deal with.

And that’s not all. Looking down the list of possible therapies, you notice that someone has a plan to replace or repair almost every body part! I’m hitting the “ol’ man” stage and my bones are beginning to creak, I’d like to have a talk with some of these people.

So take heart – we’re not out here alone.

Heart Failure

December 30, 2009

“You’re in heart failure,” the doctor told me in the spring of 2002. Oh, boy… I wasn’t sure what heart failure was but I knew that the last time I had it, I was rushed to Johns Hopkins for surgery. That’s a comforting thought. And the doctor said it calmly, casually, as if he had just told me a fact that was common knowledge. Don’t take it so hard, doc.

I learned later that my first bout with heart failure was because I was five months old and I hadn’t had any surgical intervention yet. Once the surgery was done and I stabilized, my heart was functional enough to do its job. What I had this time was Congestive Heart Failure (CHF). Back then my heart was failing rapidly, really just coming apart at the seams. With CHF, my heart is failing again… just very, very slowly.

Imagine that you have a rubber ball. Day after day, you bounce your ball for hours on end. It’s nice and rubbery and no matter how many times you bounce it, it always bounces as high as the day you bought it. That’s how a normal heart works.

Now imagine you have a rubber ball, and you bounce it all the time. But this rubber ball has a flaw – maybe it isn’t formed well, or maybe the  rubber isn’t the highest quality, almost anything – but you begin to notice that your ball is losing its bounce. It takes more and more effort to make it bounce as high as it once did, and eventually no matter how hard you slam it into the floor, it just won’t bounce as high. That’s a heart going through Congestive Heart Failure.

If you google Congestive Heart Failure, you are going to get scared: A lot of the studies say that the average survival rate after a CHF diagnosis is five years. Obviously, you have to read deeper to find the truth. The studies that show a five-year survival rate usually take into account all diagnoses of heart failure during the study period – including the people who are already in the hospital with another illness and then receive the CHF diagnosis shortly before they pass. Since Heart Failure is fairly common in the late stages of life, they get counted in the study, even if that is not the main cause of their death.

Survival and quality of life with CHF relies heavily on the patient. You will be prescribed diuretics to keep fluid from building up in your body, and these will cause you to go to the restroom more often. You will also be put on a diet to help your heart beat easier, the standard CHF diet usually has two rules: consume less than 2000 milliliters of liquid and less than 2000 milligrams of sodium per day. That’s the standard diet, everyone is different.

The 2000 milliliters isn’t hard – that’s a two liter bottle of any liquid. (A friend of mind says that the 2000 milliliter part is harder, because she drank about a gallon of water a day before developing CHF.) Many people keep a two liter bottle in their home, and when they have a drink, they pour an equal amount into the bottle. This gives them a quick visual guide to how much that have consumed. Others just scribble the amount on a piece of paper (A 12 ounce can of soda is 355 milliliters, for example; almost all liquid products list the amount in ounces and milliliters) or do the math in their head.

The sodium restriction is much harder. For a few weeks, you’re going to have to read the nutritional labels on the food you buy closely, to check out the amount of sodium per serving. Processed meats are loaded with sodium, so if you are a fan of sub sandwiches… well, that might have to become an occasional treat, rather than lunch every day. And do yourself a favor and split it with a friend.

The best thing you can do is to stop using salt when you cook and allow everyone to season their own meal. And make sure that the salt shaker stays at the other end of the table. Mrs. Dash seasoning is popular when you are on a low sodium diet. Personally, I am not a fan of Mrs. Dash, so I use a Garlic and Herb salt free seasoning.

Every morning, a CHF patient should go to the restroom immediately after getting up, and then weigh themselves. Keep track of your weight, and if you gain more than 3 pounds in one 24 hour period that you can’t explain, call your doctor. The doctor will probably tell you to take a larger dose of diuretics that day, and if you are still up tomorrow morning, come by the office. After you get used to your diet and medications, you’ll know what to do and you won’t even call unless the weight just won’t come off.

The two most important factors in living a good life in spite of heart failure are a good initial examination and diligent self care. The people who are able to adhere to the diet, take their medications, and get some exercise do much better than those who don’t. Congestive Heart Failure requires a lifestyle change, you don’t get a vacation, and you can’t take a day off. Even if you are traveling and do not have easy access to a scale for your daily weight, that doesn’t mean that you can ignore all the other rules. In fact, maintaining your CHF control can be very difficult while away from home. But if you are determined to not let it beat you and to live your life to its fullest, Congestive Heart Failure can be controlled.

It’s all up to you.

“At Night I’m a Junk Food Junkie…”

October 26, 2009

I have to go to the doctor’s office today to have my Prothrombin level checked, and I have a feeling that I’m going to be changing the amount of blood thinner I take. But overall, I think it is a good thing.

When you give the blood sample to have your anticoagulation level checked – a measure of the ability of your blood to clot – the results are your INR level. INR stands for International Normalized Ratio. At one time, there were many different systems and math formulas used to check anticoagulation, and lots of different results: This testing service may give you a result of 1.4, another might give a result of 73. It was too difficult to figure out if the systems were compatible, so finally the World Health Organization stepped in. A standardized system was determined along with a standard scoring system (the INR level). So now a reading of 2.6 means exactly the same thing, no matter if you have you test done in rural Virgina or downtown Toronto.

The rate at which your blood clots can depend on a lot of different factors: the availability of Vitamin K or Potassium are two of them. So when you start your anticoagulation therapy, they tell you to watch your intake of both and above all, be consistent.

I’ve been breaking that rule. Whoops!

All my life I have been a “Junk Fook Junkie”! That changed when I went on the low salt diet for Heart Failure, but I still ate poorly (Nutrition wise – it all tastes pretty good!) . I’ve recently decided that while I probably can’t just change completely, I can at least improve my diet.

So it’s been a bunch of little steps – and I’m a fan of the Eat This! Not That! series of books. They occasionally bump into my Low Sodium restrictions, and when that happens, the heart wins. Don’t take them as gospel, but rather as a guideline, and you’ll make better decisions. There are some Rules for Eating Well online at Everything Health that also make a lot of sense:

  • If you aren’t hungry enough to eat an apple, then you aren’t hungry!
  • Avoid snack food with the “OH!” sound (Doritos, Fritos, Cheetos…).
  • It’s easier to pay the grocer than the doctor.
  • Never eat something pretending to be something else (fake meat, fake butter, chocolate flavored drink…)
  • Make your own lunch whenever possible

But since I’m working on eating better, my diet is nowhere near consistent, and I have no clue how the Vitamin K and Potassium levels are doing. One thing you are told it “Try to eat about the same amount of green leafy vegetables that you usually do – big swings can mess up your INR.” Well I am not doing that, I am trying to increase the amount!

But they’ll just tell me to change the dosage of Warfarin that I take, and besides – you can’t really give a fellow a hard time for trying to take better care of himself, can you?