My Adventures with Heart Failure

In case you were wondering, I did indeed have the ICD removed. Now I am deviceless. My arm and shoulder are still a bit sore - the surgical "wound" from removing the whole device and letting the resulting "pocket" heal from the inside out is a bit more major than putting the device in was. And my other arm is occupied by a PICC line running IV antibiotics from a portable infusion pump. So it's a bit impaired too. Which is why you haven't seen any long entries here. As soon as the PICC line is removed next week, I'll have a long post about the whole experience, plus a post on today's visit with my regular cardiologist in which I learned that several classes of common antibiotics are arrhythmogenic (cause arrhythmias) and should be seriously avoided by people at risk for arrhythmia!

Of special interest to women:

---

Heart devices may help women less than men: study
Mar 15 (Reuters) - Implanted devices designed to shock the heart into a normal rhythm may not be as effective in women as they are in men, researchers said on Monday.
Researchers at Hartford Hospital in Connecticut and the University of Connecticut evaluated five previous trials of implantable cardioverter defibrillators (ICDs) and found that ICDs cut the risk of death by 24 percent in men compared with 12 percent in women.

ICDs are stopwatch-sized devices placed in the chest to regulate a dangerously fast heart beat with a jolt of electricity.

Nickole Henyan, lead author of the study and a pharmacist at Hartford Hospital, said the researchers could not explain why men experience more benefits from ICDs than women.

Henyan said the findings, presented at a meeting of the American College of Cardiology, needed to be confirmed by future research. It is possible that other studies that included more women might give different results, she said.

The majority of clinical trials of ICDs have involved male patients.

Publish Date: March 15, 2006

I have been hearing from SEVERAL people just in the past week, who got diagnosed with LBBB, told not to worry, and a couple of years later got diagnosed with heart failure. This seems to be a distinct pattern emerging. You all know I'm not a doctor, so I can't make a diagnosis, but I can sure give you this advice: if your doctor tells you to ignore it, do at least 2 things: (1) get a second opinion, and (2) absolutely INSIST on an annual EKG, echocardiogram, and chest x-ray. If you need backup, print out some of the articles I've reprinted in this blog, and wave them in your doctor's face. You have every right to have your concerns taken seriously!

I have lots of other news, but typing is a bit difficult at the moment. Another post soon!

Well, crap. As you recall, I had surgery two weeks ago, and it wasn't successful - they did not manage to implant the third lead. Now there seems to be an infection in the pacemaker site. Going to have to go back in for surgery Monday morning. 5% chance it's harmless serum, they drain it, I go home. 95% chance it's infected, they will remove the whole pacemaker, which happens to be somewhat more complex and riskier than putting it in was (details provided at some future point when I feel more like typing), and have to stay in the hospital for several days because of the risks and so that they can keep me on IV antibiotics. Crap crapcrapcrapcrapcrap.

Little ray of sunshine, aren't I?

Of course the incision itself is itching like crazy as it heals, but also some of the surgical tape seems to have induced some contact dermatitis, so there are patches of outlying itching as well.
Aloe vera gel. Benedryl gel. Cortisone lotion. Still itches.

Another article:

---

Breathing training can help heart failure patients
Mar 03 (Reuters Health) - People with heart failure and difficulty breathing may benefit considerably from using a device to train the muscles involved in breathing, Brazilian researchers report.
The Threshold Inspiratory Muscle Trainer (Healthscan Products, Inc.) applies a load while subjects breathe in, thus training the muscles to become stronger.

Dr. Jorge P. Ribeiro of Hospital de Clinicas de Porto Allegre and colleagues randomly assigned 32 patients to either a 12-week home-based program using the device with an inspiratory load maintained at 30 percent of maximal inspiratory pressure, or to a placebo program in which the participants had no inspiratory load.

Muscle training resulted in a 115 percent improvement in maximal inspiratory pressure, and a 17 percent increase in peak oxygen uptake.

Also in a test measuring how far the subjects were able to walk in 6 minutes, the distance increased from an average of 449 meters to 550 meters, the investigators report in the Journal of the American College of Cardiology.

Active treatment patients also experienced an increase in quality-of-life scores.

The researchers point out that although the training was not continued beyond 12 weeks, part of the effect on maximal inspiratory pressure and on quality of life was still maintained after a year.

"Together with the observations from other small trials," Dr. Ribeiro told Reuters Health, "our data indicate that inspiratory muscle training is a safe intervention that can be considered for the management of patients with chronic heart failure, particularly those with weakness in inspiratory muscles."

Given these findings, the team also concludes that it may be worth screening heart failure patients for breathing muscle weakness.

SOURCE: Journal of the American College of Cardiology, February 21

A couple of recent articles about heart failure from Business Week. Business Week???? Not where I would have expected them, but hey, let's be glad people are finally noticing we're out there.

Spotting Heart Disease Early
MARCH 6, 2006
Heart Health
By Kerry Capell

Spotting Heart Disease Early
Roche and other companies are devising diagnostic tests that help more
patients prevent heart attacks. The next frontier: genetics-based screens

Diagnosing heart failure is time-consuming, expensive, and often inaccurate.
The condition, which occurs when the heart is unable to pump enough blood
throughout the body, afflicts 5 million Americans, with 550,000 new cases
reported each year. But its symptoms -- shortness of breath, swollen ankles,
and fatigue -- are vague and easily confused with other conditions such as
lung or kidney problems. This complicates and delays diagnosis while
increasing the chances of error. Missing a heart failure diagnosis puts
patients at high risk of serious problems -- or death -- while overdiagnosis
may lead patients to receive unnecessary and costly treatment.

BIG BREAKTHROUGH. Now, with a simple blood test, doctors can accurately
diagnose or rule out heart failure in minutes. Launched two years ago by
Swiss drug and diagnostics giant Roche Holding (RHHVF), the test measures
the levels of two proteins, NT and BNP, which are elevated when the heart
muscle is under stress. Levels of these proteins can be raised in cases of
heart failure, heart attack, unstable angina, pulmonary embolism, and acute
high blood pressure.

Initially, the test was used to diagnose heart failure and monitor its
treatment. But last month researchers at Massachusetts General Hospital made
a major breakthrough.

In clinical trials, the test proved able to predict long-term risk of death
in patients with shortness of breath. The researchers found that patients
with elevated levels of the proteins, regardless of the cause, had a higher
risk of dying within one year.

"CONSIDERABLE RISK." As a result, they believe the test can be used not
only to determine diagnosis but also to gauge long-term prognosis, allowing
doctors to quickly identify patients needing more aggressive treatment and
follow-up.

"The next logical step is to evaluate treatment interventions for those with
higher NT-proBNP levels to see if we can reduce their considerable risk for
death," says Dr. James Januzzi Jr., assistant professor of medicine at
Harvard Medical School and a staff cardiologist at Massachusetts General
Hospital, who led the research.

Such tests represent a major advance in the diagnosis of cardiovascular
disease. Led by Roche, the world leader in cardiovascular testing, many
companies now have diagnostic tools on the market to both measure a
patient's risk of heart disease and detect existing heart disease. More
tests can then distinguish the exact type of disease.

WORST OF THE WORST. For instance, Roche was the first company to introduce
a blood test for troponin, a protein released from dead or injured cells in
the heart muscle. This test can determine not only whether a patient has had
a heart attack but the exact extent of damage to the heart muscles.

Roche is now taking a much closer look at traditional risk factors for
cardiovascular disease such as cholesterol, in the hopes of developing
diagnostics that can pick up heart disease much earlier. So instead of just
looking at LDL, the so-called bad cholesterol, the company is looking at the
worst of the worst subsets of LDL to find very early indications of clogged
arteries, says Dr. Hendrik Hüdig, head of Roche Centralized Diagnostics'
marker program.

But pharmaceutical and diagnostic companies are moving beyond such
traditional markers and exploring a range of proteins and genetic mutations
to develop more sophisticated tools to enable earlier and more accurate
diagnosis.

PRECISE TARGETING. "What we're researching is how to assess which patients
are at risk, when will they develop heart disease, how their disease is
progressing, and whether treatment can be monitored," says Dr. Joachim
Eberle, head of research and development at Roche Centralized Diagnostics.

Diagnostics is the first frontier in the ongoing quest for personalized
medicine. But as scientists discover more about the exact proteins and genes
involved in specific forms of heart disease, they will in turn discover
potential targets for better and more effective medicines.

In the meantime, diagnostics companies are in a race to develop
sophisticated tests to target with greater precision those most at risk for
heart disease. It has proved a hard slog, since heart disease is not one
disease but many, which are caused by a complex combination of genetics and
environment.

GENETIC RISK SCORE. But Celera, an Alameda (Calif.) biotech co-founded by
genomics pioneer J. Craig Venter, is on the verge of introducing a new blood
test to help predict whether a patient has a high or low risk of developing
heart disease, independent of traditional risk factors such as high
cholesterol or diabetes.

In conjunction with researchers at Harvard, the Cleveland Clinic, the
University of California at San Francisco, and the University of Texas,
Celera has examined the genetic profiles of more than 30,000 patients. By
comparing genetic samples of patients who have had heart attacks with those
who haven't, they have found a number of novel genetic variations that
contribute to the development of coronary heart disease.

These variations form the basis of Celera's genetic risk score, which the
company says will be available in "a matter of months, not years." "People
will be able to determine definitively whether they carry incremental risk
for heart attack," says Celera President Kathy P. Ordonez.

NO SYMPTOMS. Such knowledge could even lead to preventative treatment. For
instance, patients who have no symptoms of heart disease but have a high
genetic risk score might be given cholesterol-lowering statins.

Currently, most doctors prescribe statins to patients exhibiting more than
two of the standard risk factors such as high blood pressure, high
cholesterol, or obesity. But as Ordonez points out, are more than 17 million
Americans fall into the category of moderate risk and therefore wouldn¹t be
treated. If these patients were armed with their genetic risk score, doctors
could intervene earlier and stop heart disease in its tracks.

Capell is a senior writer in BusinessWeek's London bureau

The only problem I see with the above is that the tests for NT and BNP wouldn't necessarily catch everyone, no matter what the article says. My BNP levels are completely normal. If that were a required criterion for diagnosis, I would still not be properly diagnosed.

Heart, Heal Thyself?
MARCH 3, 2006
Heart Health
By Catherine Arnst

Heart, Heal Thyself?
So far, stem cells have not delivered the results scientists hoped for. But
excitement is still rising

The dream of medical science is to train the body to repair itself in the
face of disease or trauma, and the main focus of this dream is the heart.
For five years, teams of doctors around the world have been trying to coax
adult stem cells, the body's innate repair kit, to regenerate damaged heart
tissue after a heart attack or other coronary disease.

These efforts have generated excitement among heart specialists, despite the
fact that clinical trial results have been uneven and no one is quite sure
how, why, or even if, stem cell therapy works. The excitement continues to
mount, despite a study released on Mar. 1 stating that one of the most
widely examined methods for delivering stem cells to the heart had failed.

BONE MARROW. A team of German doctors from Technische Universitat in Munich
reported on a rigorously conducted trial in the Journal of American Medical
Association (JAMA). Scientists injected G-CSF, a human growth factor known
to stimulate adult stem cells, within 12 hours after a heart attack.

There were 114 patients in the study, more participants than the three
earlier G-CSF trials combined. Half received the treatment, and the other
half were given a placebo. After six months of follow-up, the researchers
discovered that G-CSF did prod a significant number of stem cells to move
from the bone marrow, where they are produced, to the heart, with no serious
side effects.

Nonetheless, there was no improvement in heart function, throwing doubt on
the whole stem cell approach. "The answer is fairly unequivocal," says Dr.
Kenneth Chien, director of the cardiovascular research center at
Massachusetts General Hospital in Boston. "The stem cells did not improve
function."

DIRECT DELIVERY. Unequivocal or not, the failure of the German trial has
not dampened enthusiasm for heart regeneration. Several reports on stem cell
research will be highlighted at the American College of Cardiology meeting
in Atlanta on Mar. 11-14, and teams of doctors and biotech companies around
the world are continuing their research in this area.

Most are quick to point out that their methods are fundamentally different
from the German approach. If anything, the failure of G-CSF turned more
attention on the many efforts to deliver stem cells directly to the heart,
rather than indirectly trying to stimulate them with a growth factor.

There have been no human studies of the direct approach on the scale of the
German trial, and the many smaller studies have often been contradictory.
But even Chien, who considers himself a conservative when it comes to stem
cell therapy, says it is one of the more exciting areas of heart research.
"I don't think it should be considered a slam dunk, but I do think it is
promising long-term."

SHAPE SHIFTERS. Stem cell researchers, many of whom also treat patients,
are driven by a huge unmet need. Some 1.1 million Americans are struck by
heart attacks each year, and 4.8 million suffer from congestive heart
failure, in which the heart stops pumping effectively, with 400,000 new
cases diagnosed each year.

Both these conditions are caused by the destruction of heart muscle cells,
and there are few effective therapies that can counteract that damage.
Unlike most other tissues in the body, the heart does not regenerate itself.
When damage occurs, it merely grows scar tissue, which restricts pumping
even further.

Stem cells seem like an obvious solution. In an embryo, stem cells, which
are undefined, can turn into any tissue in the body.

Because of restrictions and ethical concerns about the use of embryonic stem
cells, however, most heart experiments involve adult stem cells extracted
from the bone marrow. The pioneers in this area are Drs. James T. Willerson
and Emerson C. Perin of the Texas Heart Institute at St. Luke's Hospital in
Houston.

ALMOST DOUBLE. In 2000, Willerson and Perin treated 14 Brazilian patients
with stem cells removed from their hip bones and directly injected with a
catheter to their damaged hearts. Within two months, the patients
demonstrated improved heart function, with almost double the pumping motion
in those parts where the cells were injected.

When one of those patients died 11 months after treatment, of unrelated
causes, the doctors discovered during an autopsy that there was clear
evidence of new blood vessel formation to the heart.

The team is now conducting a U.S. trial with 25 patients, and recently won
approval for another trial. "We realize that we've not identified the best
stem cells, or the best method of administration," says Willerson. "We don't
want to be part of the hype, but this is an exciting time."

SMALL SAMPLE. Willerson and Perin are using the patient's own adult stem
cells to avoid rejection by the body's immune system. But a small biotech in
Baltimore, Osiris Therapeutics, is aiming to come up with a more universal
approach by using donated mesenchymal stem cells (MSC).

These are universal to everyone, so they do not set off an immune reaction.
Animal studies indicate that the MSCs are prompted by inflammatory signals
to head to the site of an injury, and Osiris recently started a Food & Drug
Administration-sanctioned clinical trial to test the therapy in heart attack
patients.

Then there are stem cells that actually originate in the heart, discovered
only two years ago. These cardiac stem cells exist in very small numbers,
but doctors at Johns Hopkins School of Medicine have figured out how to
harvest them by taking a small tissue sample from the heart and then growing
them in culture.

FIRST PAGE. The cells have not yet been tested in humans, but when injected
into animals they appear to go straight to the heart and regenerate tissue,
says Dr. Eduardo Marban, chief of cardiology at Johns Hopkins. "The mystery
is: If these cells do work to heal the heart, how do they work?" questions
Marban. "We're reading the first page of a very long book here."

Long it may be, but Marban speculates that there could be evidence of
whether or not adult stem cells work in humans in a year or two. It will
certainly take longer to figure out why. There are many scientists in the
field who believe the stem cells may be merely "good neighbors" that are
prompting the heart's own healing process to kick into high gear.

That wouldn't be such a bad discovery, says Dr. David T. Scadden,
co-director of Harvard University's Stem Cell Institute. "In the short term
the stem cells may be providing something that reverses damage, but that
could lead to a whole new generation of studies into an off-the-shelf drug
that would perform the same function." In that dreamscape, heart attack
victims could just visit the pharmacy instead of the hospital.

Arnst is a senior writer for BusinessWeek in New York

The good news is, I'm home from the hospital, and only a little the worse for wear.
The bad news is, nothing good happened either, which is why I am back at the keyboard on Thursday evening. After digging around and poking under my heart for a couple more hours than planned, the doctors still could not get through a bit of membrane that's not supposed to be there, to get the new lead into the proper spot. Damn!

The upsides to this: I got to come home Thursday afternoon (although all I did once I got home was sleep). I'm not any worse off than I was before. I met some very nice people - the team of nurses was John, Joanne, and James, which has got to be confusing on occasion; had a nice conversation about motorcycle touring with John, and James has a peculiar sense of humor. Hari (whose full name I actually *can* spell and pronounce, but I'll spare you) told me stuff I didn't know about how Indians usually sign their names and why US counterfeiters/forgers/ID thieves always get it wrong. All in all, I picked up a nice amount of trivia to add to my stores. And the recovery people actually listened to me - when I woke up, there was a turkey sandwich and orange juice and cranberry juice waiting for me, which they let me gobble down right away.

The downsides: well, many things are the same as if the surgery had been successful: there's an incision in my chest, it hurts like hell, I need to take the same painkillers and antibiotics as if we had actually accomplished something. Sitting up to get out of bed is difficult when one can't use one's left arm to balance on or push with. I can tell that the sedative hasn't quite worn completely off yet-I'm making far more typos than usual. I guess that's in part because instead of being out of surgery by 11 or so, they kept trying, and it was after 1:00 before they said let's call it a day before we poke through something wrong, so I've had a larger dose of the sedative than expected.

And my shoulder is sore and I'm not going to keep typing for much longer, but I did want to give y'all this update. What the future holds: sometime in a few months, after this incision heals up, we discuss doing things the hard way - cracking open a couple of ribs so that the dr can peer right in at the heart directly rather than through fiber optics, and can actually push things aside if need be. That will be more serious surgery, requiring several days in the hospital and weeks of recovery, so I told him let's plan on after 4th of July- usually no band concerts from July 5 to the end of August, so if I can't play, that's the time not to. Although it will interfere with some nice bike riding weather. Anyway, not going to worry about it yet - sufficient unto the day is the wickedness thereof.

Now I am going to lie back down and rest my arm. And do my best to keep Pickle from jumping on it to offer me sympathy.