Posts Tagged ‘Heart Failure’

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.

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.

Clinical Trial stopped!

June 2, 2010

Pfizer has decided to stop the recruitment of patients into the EMPHASIS-HF drug trial early. That headline should raise some eyebrows, since it means one of two possible outcomes: Early results are either very good or very, very bad.

Thankfully, the results seem to be very good! According to the press release (a 5 page .pdf file) the study reached its “primary efficacy endpoint” early – in other words, the investigators proved what they were looking for. Taking Eplerenone (also known as Inspra) in conjunction with recommended Heart Failure standards of care, lowers incidence of hospitalization and/or death in patients with mild to moderate heart failure. The adverse events (things that went wrong) included a higher level of potassium in 8% of the patients taking Eplerenone and 4% had renal impairment. Renal impairment means that their kidneys stopped functioning, but that condition can occur because of heart failure also. Apparently the incidence of Renal impairment caused by the new drug is not much different from the number of kidney problems cause just by having heart failure. The Clinical Trial was a double-blind test, which lends it even more credibility, as neither the subject or the investigator knew which drug was being used – the Eplerenone or a harmless placebo. When carried out correctly, a double-blind test prevents either the subject or the investigator from being biased.

So what happens now? Don’t expect to be getting a prescription for Eplerenone, the company does not have a license to sell to human subjects. The study was a small one – only 3100 people, if it had reached full enrollment. All patients, no matter which drug they are on, will be informed of the decision to close the study early. Pfizer has asked for permission to move all consenting patients into a larger study of the drug.

Sometimes medical research comes in small increments – baby steps. But you have to walk before you can run!

Mechanical Man

November 17, 2009

Frank had a problem.

Frank had a stroke, and then the doctors diagnosed him with Dilated Cardiomyopathy. That is not a Good Thing to have, as the heart muscle has become enlarged and weakened. Frank was in heart failure, and at the moment, he was not long for this world.

So doctors at the Texas Children’s Hospital placed Frank on the heart transplant list. And to help him survive until the transplant, they placed a Ventricular Assist Device (VAD) inside his body. The VAD will literally help his heart function until a donor heart can be found. But Frank is different – he’s the very first pediatric patient to receive a VAD and be able to leave the hospital!

In the bad old days before VADs (which wasn’t that long ago) it was a race – the time it took to find a suitable donor heart verses the time it took for the patients original heart to finally just give out. And it was a high stakes race, too: if the patient lost this race, they lost their life. And too many patients were losing.

But a VAD can help a weak heart keep going, and give it a chance to win the race.

Stem Cells to the rescue!

June 23, 2009

There have been a lot of advances concerning Stem Cells recently. Just mention the phrase “Stem Cells” and the hair stands up on your arms: it is a controversial subject with lots of questions and very few good answers. Most of the answers generate still more questions, so it seems we just can’t win.

But these therapies involve Adult Stem Cells, which are not very controversial. Most people can agree that reusing your own Stem Cells – hey, all we’re doing is recycling! – is a good thing. Adult Stems usually doesn’t lead to people marching in the streets.

If you need a new heart valve, maybe your mom can help. Scientists in Germany predict that within five years, we’ll be able to grow new heart valves from the Stem Cells found in umbilical cord blood! Researchers in Oakland, California have also found that the placenta is an excellent source of Stem Cells – perhaps even better than umbilical cords.

I don’t think that Congenital Heart Defects (CHDs) will ever be eradicated or “cured.” There are just too many variations and factors at work. I do think that we’ll eventually be able to stop them in their tracks through surgical improvements, medications, and better science. This is a good example of that school of thought. So don’t be surprised to hear about more and more expectant moms saving cord blood and their child’s placenta- you just never know!

Another Stem Cell advance – currently being used with kidney transplants – is to “borrow” Stem Cells from a donor to cut the chance of rejection. The idea is to trick the recipient’s body into thinking the new kidney is a natural organ, or at least to not attack it as hard. The study is in its early stages, perhaps if it shows promise another study will try it on hearts. It could take quite a while to prove or disprove the theory, but properly done medical research moves in small steps.

Another advance in Stem Cells we’ve discussed before: Stem Cells injected directly into the heart to combat heart failure. The doctors take a sample of tissue, usually from the patients thigh, collect the Stem Cells and grow them in a culture for a few days. After that it’s back to the operating room, where they are injected directly into the heart. Ouch! But the Stem Cells usually transform into heart cells, and the efficiency of the damaged heart muscle improves.

One of the dangers of this procedure is that the heart has to be stopped before the cells are injected, then restarted. But this new approach tries a different strategy:  The Stem Cells are injected into skeletal muscle. It works just as well – perhaps better – and doctors don’t have to stop and restart a fragile heart.

Work It!

June 4, 2009

There really shouldn’t be any doubt about it – if you have a chronic illness such as a heart defect, you have got to take care of yourself. Obtaining health insurance is difficult if not impossible – yet we are the ones who need it, as we’ll need doctor’s appointments and prescription medication more often than most people. Public assistance (Medicare or Medicaid here in the United States) is available, but both programs make you jump through bureaucratic hoops and limit the amount of pay you can earn. Most CHDers I know have bum hearts but sharp brains, and we’d rather not go that route.

One of the best things you can do for yourself is exercise: you’ll feel better, and hopefully you’ll be able to hold the doctor at bay for a little longer. You usually can’t weight – lift yourself off of your medicines, but improve your health and the doctor might not need to see you nearly as often. After I went into heart failure and then had a stroke, my cardiologist wanted to see me once a month for eight months – That’s the cost of gas to from my home to Atlanta and back (about 500 miles one way), meals, and a hotel room every 30 days. It adds up.

So do what you can to take care of yourself. First of all, discuss your exercise options with your doctor. If you propose to start walking, he’ll probably be cool with that. If you want to climb Mount Everest… I doubt he’ll agree!

As you may know, I walk. I would have loved to have walked the Bolder Boulder, but my cardiologist had said “No.” because of the altitude, and I followed his advice.  A good brisk walk that gets your heart rate up is a great thing. It gives you time to sort through your problems and make important decisions. It also gives you a natural high, a sense of feeling good and actually doing something to help yourself. And recent research has shown that feeling lasts a lot longer than you might think – even though you don’t “feel” it, your body is supercharged! Obesity and Diabetes make a case of heart failure worse, so it stands to reason that if you are susceptible to heart failure, avoid the other two. Exercise can reduce your risk of both conditions.

So go for a walk. Play in the neighborhood. Put some music on the stereo and dance around the house – I promise I won’t laugh, I can’t dance either! Just do something. Just get up and start taking care of yourself!

Do yourself a favor and move those muscles;

Heart Failure, Salt, and Exercise

May 8, 2009

The two rules of the Congestive Heart Failure (CHF) diet are 1) keep your liquid intake below 2000 milliliters of liquid per day; and 2) reduce your daily salt intake to below 2000 milligrams of sodium per day. Keeping your salt intake down is crucial: less sodium means less liquid trapped in your body, which makes it easier for your weak heart to do its job.

Lowering your salt intake is also the hardest goal to accomplish. Putting down the salt shaker usually isn’t enough – processed foods are notorious for having high salt content.  Sandwich meats are among the worst, and those “heart healthy” soups are low in fat… but the sodium is so high, you can see it from below!

A new study shows that even people who were trying to keep their salt intake below 2000 mg overshot the mark. Ouch! And this just isn’t a suggestion – for a Heart Failure patient it is a critical lifestyle change. So if you are on the CHF diet, keep a close eye on your sodium intake. It may be higher than you think!

There is also a report out on something you can do to actively combat Heart Failure: exercise! Obviously, we are all different, so you should discuss an exercise program with your doctor  before you start. What works for me may not be good for you, so check first. But CHF patients who are able to add moderate exercise to their diet and medication have a higher quality of life.

So what is considered “moderate exercise”? Walking! 100 steps per minute for 30 minutes daily, (3000 steps in 30 minutes, if you are using a pedometer) five days a week is a good exercise program. That’s a pretty fast pace, so start slow and work up to it. After all, Rome wasn’t built in a day, and you don’t have to turn yourself into a treadmill trackstar overnight.

While you are walking, why not use the new FiTrainer? FiTrainer is a pair of  headphones that also includes an ear clip with a built in heart rate monitor. It is pre-programmed with several workouts (with music!) or you can plug in your own MP3 player. An electronic voice reports your heart rate through the earphones, so you never have to check a display!

Tonights menu: Links! (with Chili!)

March 13, 2009

This is a long, but excellent read: AD over at A Day in the Life of an Ambulance Driver writes a love letter to his daughter.

There is a new sub-specialty of Cardiologists. They aren’t Adult Congenital Heart Defect Cardiologists, but this can only be good news for CHD patients. The medical field is starting to realize that there is a need for doctors who can serve a small patient base. They are also trying to help patients gain the confidence to manage their own care.

Here’s an EKG strip I hope you never see.

I could have used this after my second heart surgery! Adhesions almost put me in the ground, so this product is very welcome!

People who research treatment options get better care. So don’t just sit there like a bump on a log – get active and get involved! This is your body, find out what’s going on!

Traveling with a chronic illness can be a challenge – but challenges are made to be overcome! Don’t sit at home wishing, go places! Do things! Have Fun! Send a postcard to the Funky Heart! The name of this article is “Travel Tricks for Sick Chicks” but most of the recommendations are for all ages and genders.

Healthcare guidelines are making doctors and patients enemies. Our leaders need to get it together, your doctor is supposed to be a trusted advisior. And if you don’t trust your advisiors, bad things can happen.

Bide your time!

January 27, 2009

Having a Congenital Heart Defect affects your entire life. You would be surprised at the number of normal, ordinary things that have to be done differently because of it.

Next Monday, I have to call the pacemaker lab for a telephone check. The technology has gotten better; I used to have to put two bracelets on my wrists, connect wires to the bracelets, and then lay the telephone handset in a special cradle that communicated with the lab. Now all I have to do is connect a small box to the telephone line and place a handheld monitor over the pacemaker. The box places the call automatically, and let’s me know if it is not getting a good signal from the pacer.

You have to watch your diet all the time. You can eat anything you want on the Congestive Heart Failure diet – as long as you don’t exceed 2000 milligrams of sodium and 2000 milliliters of liquid per day. 2000…? Well, perhaps I can’t eat anything I want! Most processed meats are out, and most seafood. Bummer!

Gotta watch the Vitamin K intake when you’re on Anticoagulation therapy, too. So ease up on the leafy green veggies.

“Simple” medical procedures suddenly aren’t so simple any more. My dentist didn’t pull my wisdom teeth, but rather sent me over to an Oral Surgeon… just in case. The Oral Surgeon didn’t pull my teeth in his office, like he normally would have. The procedure took place in an operating room at the hospital … just in case.

And playing on my mind today is my hernia. It’s acting up… and has been acting up a lot lately. It used to be pretty sedate, but it is looking more and more as if I’ll have to have it repaired, and soon.

Hernias are easy to fix, you’re thinking, and you are right. But I have low blood oxygen. I’m not going to do anything without talking it over with my Cardiologist first. I am NOT Standard Hernia Repair #195,034, I’m rather unusual.

So what do you do when you have to constantly make your life fit around a bum heart? Well, there’s the simple way – just give up. Sorry, but that is not an option here.

If I give up, my heart defect wins. And I don’t like to lose.

So what do you do? You follow the rules. You reign yourself in. You eventually learn to change the rules and turn your disadvantage into an asset. I can’t tell you how – everyone has to find their own path – but where there is a will, there’s a way!

And you wait – wait for all this medical technology that’s being developed, better medicines, better operations, because some of that will peel your limitations away. And one day we’ll beat Heart Defects, once and for all.

Until then, “I do what I do to defeat the evil inside of me.”

For these links we give thanks

November 26, 2008

Just in case you didn’t know, helicopters don’t glide very well. There have been a rash of medical helicopter crashes lately, which makes some people wonder if they are used too often. This issue is being investigated, and the use of air ambulances is down. So either the number of serious illness and injuries are down (doubtful) or the choppers are flying less. Hmm… why would anyone call for an airlift when it wasn’t needed?

Don’t go here for your medical information, they’ll scare you half to death. And don’t always believe these guys. And if you are looking for drug information, don’t look here. Check out Medscape instead. It’s FREE, and Medscape has a much better drug reference page.

Dr. Wes’ brother asks “Hey, you wanna see an operation?” If you want to see an operation (double bypass heart surgery) click this link. WARNING: The blood is real, and the bone saw is pretty loud.

Laurie smells a familiar smell on a subway car and it takes her back… to an unpleasant place.

Got Heart Failure? Then work it, baby!

I think I know why he is the Happy Hospitalist… he leaves all his frustrations on his blog. Here, Happy tells the story of the guy who thinks that free = more. I’ll take an eye exam, and a rotator cuff repair, with a side order of dental. Oh, and clean out my earwax, too; someone else is paying for it! The costs add up – an implantable defibrillator costs almost as much as some people make in a year. And when you consider this, you realize that our financial situation is just going to get worse. Pay off those credit cards, folks!

Maybe they’ll let us use a spider as payment.

Sometimes though, especially around the holidays, what we really need is a friend.

It’s almost Thanksgiving Day, and I’m spending Thursday with the family. Friday, a friend and I were supposed to just have lunch together, but she has the entire day off! So I’ll be away most of Friday, too. Have a safe, happy, and wonderful Thanksgiving; and remember to be kind to your fellow man and your four legged friends.

And don’t forget, Saturday is Red and Blue Day!

Always yours;


The Funky Heart