Posts Tagged ‘Death’

From Death, Life

October 5, 2010

Greater love hath no man than this, that a man lay down his life for his friends. – The Gospel of John; Chapter 15, Verse 13

I hate that he’s gone, and I hate everything about the CHD that took this perfect child from us. Nothing can replace him, and nothing will help us “get over” this. It is too much. – Comment left last night by Ewan’s mom.

Lord, yes. Nothing can replace him, and nothing should. This was a life cut much too short. It’s been a rough week in the Congenital Heart Defect (CHD) family, as at least six CHDers of all ages have passed. Always the optimist, my hope is that someone, somewhere learned something new from one these cases. And perhaps they can couple that new knowledge with what they already know and find the key that unlocks the mystery.

Older CHDers can help, too. Something has kept us going much longer than anyone predicted…what? When I shuffle off this mortal coil I plan to leave my heart to medical research. Let them poke and prod as much as they want, I won’t mind. And perhaps someone can figure out why some of us are only granted an hour upon the stage and then are heard from no more, while others seem to be here tomorrow, and tomorrow, and tomorrow.

There is a reason why that happens… what is it? We haven’t found it yet. But I live in the hope that if something – anything – is gleaned from such a sad event it will be knowledge. Even if all that is learned is what not to do, that helps bring us one step closer.

When the light fades

August 4, 2010

With new life extending technology comes new ethical questions – often not can you take advantage of it, but should you? A recent report by the Heart Rhythm Society offered detailed guidelines concerning shutting down a pacemaker or Implantable Cardioverter Defibrillators (ICDs) near the end of life. The purpose of the document is to outline the rights and responsibilities that patients, family, and caregivers have. Fully 10% of doctors may feel that deactivation of a pacemaker – even at the request of the patient or their family – is wrong.  (The percentage that see ICD shutdown as wrong is 1%, as an ICD can be changed to “pacemaker only mode”.)

A recent Mayo Clinic study found that withdrawing a Left Ventricle Assistance Device (LVAD) was ethical, if the patient (or their surrogate) recognized the eventual outcome of such an act.  While a heart may be strong enough to continue beating for a while without a pacemaker, shutting down a LVAD is an extremely serious step. The LVAD is a pump, and the heart is a pump; the only reason to hook a pump to a pump is because the first pump can no longer do its job. Death could come fairly quickly after LVAD shutdown. The writers of the Mayo Clinic study contend that turning off a LVAD (or refusing it altogether) is not physician assisted suicide or euthanasia.

But why would someone want to deactivate a pacemaker or LVAD? There are many illnesses that steal the body while leaving the Circulatory System functional. A stroke or Alzheimer’s can leave you incapacitated while your heart beats on. Or perhaps you have reached the end of your life, and your heart just can’t go any further, so it shuts down…. only to be zapped back to life by an ICD. Blogger Dr. John M. notes that things change, life changes – and occasionally he has to tell a patient “Sir, an ICD will no longer help you.” And Dr. Wes is there as a gentleman plays the last few notes of his life’s song.

80% of all Americans will probably die of an incurable chronic illness. Most of those people want to die at home, with as much dignity as possible and as little pain as possible. I plan to fight for as long as I can stand – Rage, rage, against the dying of the light! But in the back of every CHDer’s mind is the knowledge that one day our hearts will give out… and it will probably happen slowly.

Our light will fade away rather than being snuffed out.


June 13, 2010

A sad note from Dr. Wes:

A nationally renowned cardiologist, best known for his basic research on abnormal heart rhythms and the molecular structure of drugs to treat them, and a pioneer in applying nanotechnology to the study of biomedical problems, Morton F. Arnsdorf, professor emeritus and associate vice chairman of medicine and former section chief of cardiology at the University of Chicago, died June 9 in a motor vehicle accident in Indiana on his way home from work.

No in-depth post for you tonight, as I’m organizing the submitted links for Grand Rounds. See you tomorrow!

For Jim

February 7, 2010

A true friend is gone.

Jim Wong, who I highlighted on this blog way back in August of 2008, lost his battle with Thyroid Cancer Saturday (February 6, 2010) about 6:00 PM Eastern Time.

Jim was the Moderator of the Adult Congenital Heart Association‘s (ACHA) message board; he helped select me as the second Moderator and got me up to speed on how things worked. Not just on the message board, but how hearts worked, how Congenital Heart Defects (CHDs) work, and even a little about how life works. And even before that, he was one of the first people I physically met after joining the ACHA in 2006.

If you didn’t know him, he could be intimidating. He was Jim, but his official title was James Wong, PhD. And you wouldn’t think that a PhD would have much patience, or suffer fools gladly, but we got along well. I think I’m the biggest fool to ever come down the pipe – I like to laugh, and cut up, and enjoy life.

PhD’s are supposed to be so serious. But Jim took it all in stride; he was a rock – for me and for a lot of other people. I think that no matter what he did or where he went, down deep he realized he was just someone looking for answers. And when he found them, he wouldn’t hesitate to share with the rest of the CHD community.

Jim’s friends will be glad to hear that his heart hung in there until the end. Let the record show that Jim Wong, PhD, never lost his battle with his heart defect.

I’m still looking forward to going to Florida and speaking at the Regional CHD Forum; it’s going to be a wonderful trip. But right now I’m taking a moment to remember a friend.

Rest in Peace, Jim.

Rain causes accidents!

July 22, 2009

Point 1: Rain + Speeding Car +  Slippery Road = Automobile Accident + Injured People

Point 2: Decreasing your speed helps you avoid Point 1.

Here’s proof… as provided by a new billboard in New Zealand.

Flu Update: Wednesday morning, April 29

April 29, 2009

Starting today, I’m going to cut back on the flu updates and get back to writing about Congenital Heart Defects.  I’ll still keep an eye on it, I just won’t be posting about it as often.

The first confirmed death has occurred, a 23 month old child in Texas.  Any type of Flu can kill, and when it does, it usually claims the young, the old, or those not in the best of health.

CIDRAP now features a good Swine Flu Breaking News page.

Janet over at Adventures in Ethics and Science has a good post on ethically allocating healthcare resources in a time of crisis. You need t o read this and understand what she’s saying: In a time of crisis, you very well could be on your own.

If the Flu worsens we’ll probably hear the terms “Isolation” and “Quarantine” thrown around. Effect Measure defines what those terms mean, and why one works and the other doesn’t.  They also give us a quick lesson on why some drugs work and others don’t.

UPDATE: New technology to detect Swine Flu virus.

We’ve come so far…

April 10, 2009

Here’s an article from a 2001 issue of the medical journal Circulation: Researchers studied Centers for Disease Control (CDC) records from 1979 to 1997, searching for deaths in which a Congenital Heart Defect was a factor. After identifying over 124,000 deaths that met the criteria, they discovered a few amazing facts:

* From 1979 to 1997, Congenital Heart Defect (CHD) deaths declined 39.4%.

* During the same time period, deaths associated with a CHD – in other words, a death in which the defect was a contributing factor but not the direct cause – dropped from an average of 7169 to an average of 5822. That is a decline of 5.32%.

* The number of infant deaths dropped by 50% over the study period.

So the big question is why? What are we doing right? The answer is “Nearly everything.” We’ve got better technology. Better methods of putting the patient under for surgery. For example, the “correct” formula for rendering a patient unconscious used to be X milligrams of Ether per Kilogram of body weight. Ether hasn’t been used since the 1960’s, and hardly anyone remembers the correct ratio anymore.

We’ve got a better, standardized heart-lung machine. In the early days of cardiac surgery there was no open heart surgery because no one could figure out how to operate on a beating heart. There were experiments with using another human being as a heart-lung;  running cross- circulation tubes and then stopping the heart while the other person’s heart and lungs took over for them. This left the chance that two people could perish during a surgery gone wrong – but surprisingly, the first person to undergo the procedure survived. She’s still alive today, but is a very private person and only a few select people know where she lives.

There were experiments with putting the patient in a tub full of ice and stopping the heart that way. The idea was interesting, but it never really worked. And then there was the first heart-lung machines – everyone who had an idea built one, it seemed, and in the mid 1950s there were several different versions available. Most of them used tubing from the same beer company – the same type of plastic tubes that deliver the beer into your glass when the bartender pulls the handle! But that was the best tubing that could be found, so that’s what they used. But now we have an even better, standardized Heart-Lung machine. A surgeon who worked last week in Chicago can step into an operating room in Sacramento and feel comfortable with his equipment.

The level of care has improved. Post surgical procedure used to involve sending the patient to “Cardiac Care” which was really just a spiffy ward. Only over time did the highly specialized Heart Units develop, along with the skills of the people who work there. Take the best nurse at Johns Hopkins in the 1940’s – better yet, take Helen Taussig herself – and drop her into a 2009 Cardiac Intensive Care Unit. She wouldn’t have the skills needed to work there.

And it is improving even more, all the time.

Exit, Stage Right

September 20, 2008

A friend asked me this morning what would become of this blog if something…. happened. The word itself was never used, but I figured out what was being implied. Blogs stop being updated all the time on the internet; would readers ever know if I just moved on with my life or if IT happened?

First of all, that possibility is pretty remote. Sudden Cardiac Death just doesn’t occur that often in patients with a known Congenital Heart Defect.

“Wait a minute!” You say. “There was that basketball player a few years ago. And the kid who died on the ride at Disney had a heart defect!” True, but they didn’t know they had a heart problem, and weren’t under a doctor’s care. When you have a Heart Defect and you see your Cardiologist as you should, Sudden Cardiac Death shouldn’t be the cause of your demise. (Note I say “shouldn’t”, as there are always exceptions.)

Rest assured, if I get to the point that I decide to close Adventures… down, I’ll let you know and thank you for listening to my ramblings. And if something were to happen unexpectedly, I also have a “just in case” plan. WordPress allows you to write a post, and then set a “timer” to automatically publish it later. So I’ve already written a “final post” and I have it set to appear on the last day of the month. Every month, I reset the timer for the next month. If I don’t reset it… Houston, we have a problem.

The odds are that when I die, my heart won’t kill me. It’s much more likely that I’ll accidentally step in front of a bus. (That’s why I live in a small town: Not many busses!) If I have my way, I’ll go while in a beautiful woman’s arms… and the doctors will come out of the Emergency Room and tell my friends “We’re sorry. We operated on him for nearly twelve hours, but we couldn’t get the smile off of his face!”

Heart of a Champion

August 24, 2008

Bad news today.

I’ve been following a young man (4 months old) through his parents blog. He has Tricuspid Atresia also, and he had the Glenn Shunt operation just a few days ago. It looked good for a few days — oh, there were good moments and bad moments, as there always are in a postoperative recovery room — but from what I read, I thought they were close to turning the corner. Another good day or two, maybe three, and they’d be writing about bringing the young man home.

Then his parents got The Call early this morning. You don’t want to get The Call, especially early in the morning. When the phone rings way past midnight, it’s usually bad news. They rushed to the hospital, where Johnathan was fighting for his life. Post after post, the news just kept getting worse. And finally a post at 4:06 PM (Eastern) today reported “Johnny’s gone.”

I have heard this story many times: When I was in Johns Hopkins in 1967, a baby born a month early was brought in. The child passed away the next day, and my father asked the doctor what had happened.

“We’re not sure,” he said, shrugging his shoulders. “Some children just aren’t fighters.”

From everything I have read, Johnathan was a fighter. He wanted to live, to grow up with his sister and love his parents like any child does. And he fought tooth and nail for his chance to make it. But the battle was just too much for him.

Go with God, Johnathan, and Rest in Peace.