Winning an important battle

My heart is getting better. There is no need for an implantable defibrillator.

Oh, Happy Day! Really, few words describe the mix of relief and joy I am feeling. This song actually sprang into my head when I got the news Friday, and I'm not really a gospel guy. Click on the link and enjoy. Then come back and read the rest, OK? Thanks.

The test results show evidence that my heart muscle has improved since the last echo back in March when I was diagnosed with sarcoidosis. Back then, my heart was so weak that a cardiologist at Northwestern Medical Center wanted to install a defibrillator. I decided to try a pharmaceutical regiment, exercise, got serious about quitting smoking and other lifestyle changes. All that is paying off.

I am winning a battle, in a long war.

“I know they were talking about defibrillator and stuff like that, but at this point, you do not – I repeat - you do not need anything like that at this time.”

The cardiologist told me to keep with up with my heart medicines - carvedilol, lisinopril, hydralazine and hydrochlorot. He also said he would speak to the rest of my docs about reducing prednisone I am taking to control sarcoidosis.

I am excited. I know healing takes a while. I have tried hard not to give myself deadlines (One to two years! I can't help it!) and I still have a ways to go. But this is a significant development. I am excited about it and relieved. For the past eight months, I have been wondering whether sudden cardiac arrest would claim me and what it would do to my family. I thought long and hard about having the defibrillator installed. I came very close to asking for the procedure in August when I moved back to New Jersey.

However, I held off because I believe in the human body’s ability to heal and my ability to overcome. I believe that God helps those who help themselves. I am thankful to my family and friends for helping me get through these challenging times.

I’ve a ways go: Sarcoidosis is still affecting my heart and lungs. When - will - it go into remission? What will a CAT scan of my lungs, to be done in late November, reveal? What organs might it strike in the future?

What is the correct dosage of prednisone and methotrexate that will continue to control sarc without dangerous side effects?

Will I ever get off of these pharmaceuticals for good?

That is my ultimate goal.

I don't take this win for granted. It will fortify me for the challenges ahead, and I know they are plenty. I am ready for them.

But today, I celebrate winning a battle.

Checking 'ejection fraction' for heart improvements

(Find a penny, pick it up and all day long you’ll have…goodness only knows how many germs and bacteria on your fingertips…Good luck trumps germs, though, so I pick it up. Hand sanitizer, where are ya when I need ya?

My flu or wicked cold or whatever is finally gone. I feel good so it's back to walking, lifting, and getting as healthy as possible. Does better health translate into better writing? You be the judge…)

“That is the story of the day.”

The cardiologist said the preceding after hearing my answer to his question, “What brings you here?”

I told him about everything leading up to my hospitalization in March with pulmonary and cardiac sarcoidosis. Dr. Charles J. Mattina of Long Branch, N.J., is a good listener. I like his follow up questions and demeanor. He is another doc hired in my on-going fight against the disease.

His role is crucial. Cardiac sarc kills. There is no sugarcoating it. We will know more about my heart after I undergo an echocardiogram. I do know my left ventricle is weak, two thirds weaker than it should be. Doctors at Northwestern Medical Center concluded that the sarcoidosis that scarred my lungs also weakened my heart.

A Northwestern electro-cardiologist recommends the installation of a defibrillator to shock my heart into a normal rhythm in case it beats awry, causing sudden cardiac death. He recommended that action in March, but after careful consideration and getting a second opinion, I am opting to see if prednisone and methotrexate will contain the damage.

I was sick during the winter of '08-09, the coldest winter in Chicago in 30 years. The cold air clamped down my lungs like an icy vice grip. Every breath was piercing pain. Every step, labor. But I went to work - two jobs in fact and did what I had to do to survive. Thanks to my friends I made it through. If I could live through that, I figure I can live through almost anything.

“If I was in your position, I would have made that decision,” said the cardiologist about my strategy.

Thursday, my new cardiologist will test my election fraction, which measures how well the left ventricle functions. This is usually expressed in percentages and the good folks at the Cleveland Clinic explain it pretty well. I’ll try it: With each beat, a normal heart pumps a little more than half its volume. A range of between 50 percent and 70 percent is acceptable. A lower ejection fraction signals problems with the heart, including a heart attack or disease like cardiomyopathy.

My ejection fraction was in the mid-30s when it was last measured in Chicago. I have given up cigarettes, exercise and have been consistent with medications to project the heart. I am eager to see if the situation has improved.

I like my chances, but I am open minded and ready for anything. If we don’t like the results, we’ll try something else. I am not surrendering to sarcoidosis. Too many people to see and too much stuff to do.

...Flu shot: Round two...

I’m going to roll up my sleeve and take the H1N1 swine flu vaccine shot when it becomes available. I won’t be first in line, but I will not be the last. I will do my best to avoid situations where I can get sick, but unless I decide to live in a plastic bubble, I will be out in the world and run the risk of running into someone who sneezes without covering their mouths or..picks their nose and …yuck...wrote about that always you know what grosses us out! I am taking the shot as a precaution. The pros outweigh the con. Let me know what you are doing and why. And good luck!

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Addictions come to life after death

(Today's column to dedicated to Don Hewitt, the founder and executive producer of "60 Minutes, who died Aug. 19 at age 86. He and his crew, including the late, great Ed Bradley, are major influences).

Commercials featuring the late pitchman extraordinaire Billy Mays still air and they are freaking me out.

From the idiot box, his image glows, hawking cheap little garden weeders. He filmed the commercials weeks before dying from sudden cardiac arrest and, well, there were all those gadgets to sell, so…

The deaths of Mays, Michael Jackson and Diane Schuler have held the nations' attention for weeks because they are tragedies with shocking twists.

(Left; Mays with a fan) The revelation that drugs – in Jackson’s case, the power anesthetic propofol and cocaine in Mays case - contributed to his death was shocking for many. But there were hints of problems for years. Research about the large pharmaceutical bills he owed...Something was up.

Mays, with the booming voice and trademark thick, ultra-black beard, appeared healthy. Then he died from SCA. Then the toxicology report was released, stunning many.

Nothing, however, prepared the news-consuming nation for the July 26 fatal accident involving Schuler. The 36-year-old Cablevision executive and mom drove her vehicle the wrong way along the Taconic Parkway and crashed, killing herself, her daughter, three nieces and three men in the SUV she hit.

Right away, Schuler was a news media darling. The 24-hour cable news beast and its insatiable audience served up and swallowed the surface story: The life of a straight, married suburban mom and executive tragically cut short. All that was true, but there was so much more.

(Left; Road on which Shuler fatally crashed) The Taconic is deadly! Fix the highways so this never happens again!, the shocked and grieving public demanded. State and federal officials scrambled to make it so. Then New York state police released the report that staggered the nation: Schuler was drunk and stoned the day of the fatal accident.

The King of Pop's people knew Jackson was fighting addiction. At least one of his siblings(probably La Toya, the chattiest and least talented one) told news media that the Jacksons were planning an intervention for Michael in 2007. For whatever reason, it never happened.

However, the families and friends of Mays and Schuler are like most people close to people with addictions. They did not see any of this coming. Or they are/were in denial.

Read this carefully. There are no judgment calls in this column. I appreciate the fact that Jackson and Mays elevated the profile of sudden cardiac arrest (I still think it is vital for people to be aware of SCA. I first became aware of it because of pulmonary and cardiac sarcoidosis. I try to do everything I can to keep the ticker and lungs as healthy as possible). I was as shocked as everyone else was when authorities said Schuler’s blood-alcohol level was 0.19 percent - or more than twice the legal limit. A New York Times reporter estimated that Schuler had consumed the equivalent of 10 shots of 80-proof liquor. She also had six grams of undigested alcohol in her stomach when she died.

The New York Times also reported, “There were high levels of a chemical found in marijuana, enough to pinpoint her last use at 15 minutes to an hour before her death.”

Cocaine use contributed to the heart disease that killed Mays, according to the report from the Hillsborough County, Fla., medical examiner. His wife discovered his body at their Tampa condo on June 28.

(Left image from a time when the King of Pop had the world by the you-know-whats) Jackson was...unique. He changed skin color before our eyes. He owned a pet chimp whom he dressed in a space suit. He sometimes wore a space suit. He made the wearing of a lone, sequenced white glove a fashion statement.

And he wrote and performed some of the most beautiful, brilliant pop music ever. His art will be enjoyed, mimicked and studied for generations to come. Unfortunately, his life will be publicly dissected until the end of time. But can there really be any more shocking revelations about Michael Jackson?

Mays and Schuler presented as ordinary people. Next door neighbors, if you will. And we are always shocked when we learn that our neighbors harbor dark secrets.

We have to remember that they are human. We need to be there for them if they are in need.

Consider rest if you are in a position to do so

(Today's column is dedicated to Kathryn Foster Perry, who died on July 28. She was the mother of one of my dearest friends, Lisa Ann. Mrs. Perry was intelligent, kind, gracious, gentle and generous, attributes possessed by her daughter. All who knew her will miss her. We will also rally around Lisa.)

It is said that sporting events are metaphor for life.

But when's the last time a ref granted your request for a time out after you flubbed a presentation or said something off-color to the boss or colleagues? Many of us wish we could stand up in the cubicle and call "Time Out" to devise a winning strategy during a TV commercial break.

Well, you can, formally or informally, force a time out by just walking away from the job. Of course, you should let your boss know what you're doing. Just don't walk away...

If you need time to recover from serious illness or injury you should take it. It is easier said than done. It takes planning and determination - it is hard to sit idle while your contemporaries are continuing with careers - but it might be necessary.

A doctor at Northwestern Medical Faculty Foundation in Chicago said to me that it "would be a good idea" for me to take off the rest of the summer in light of my bout with lung and heart sarcoidosis. We are trying to see if a course of drugs - prednisone, methotrexate, other stuff - will stem the tide of the disease. We keep checking the heart, which shows evidence of weakness, to see whether it can recover/rebound from the illness. There is improvement. If it does not get stronger, docs want to install an implantable cardioverter defibrillator in my chest to guard against sudden cardiac arrest. But as I just wrote, the heart is improving, so I want to give the drugs and exercise a little more time to work.

When it comes to rest, I'm taking the doctor's advice. I am interesting in getting well for the long term, not pleasing a boss in the short term. I have learned first hand that no matter how important you are to an organization and hire ups, you are replaceable. Heck, they just might fold your job to save money.

Your first loyalty is to yourself and your loved ones - family and friends. They are going to miss you when you are gone. And we don't want to leave sooner than later. So, if you need time to heal, consider a strategy that allows you to rest so you can be here as long as possible:

• Get financial affairs and health care in order - and adjust your budget to live on less

• Develop or find a support network. It might be family and friends. It might be a support group at a hospital or place of worship. Do not just sit alone or with people who do not understand or are unsympathetic to your situation.

• Really rest. Get to know your body, when it needs sleep, when it needs fuel. Limit alcohol consumption, quit smoking (I did. Finally took the Chantix. Cold turkey is too much, especially with so much going on right now). Exercise, but check with your doctor before you begin a regiment.

• Help others. Volunteering at a pet shelter, soup kitchen, tutor children; find an activity in which to participate so you stay active - remaining connected to community is important. Avoid becoming a recluse. Such a state is difficult from which to return

• Learn a new skill will recouperating, if health and strength and allows. When you re-enter the workforce, you can show potential employers you were not idle.

I thought long and hard about the pros and cons of taking a time out for health after reading that Scottish golfer Stephen Gallacher is seeking an exemption from the prefessional golfers' European Tour so he can rest and heal from a serious flare up of sarcoidosis.

Good luck, Stephen, and all the others brave and fortunate enough to take a time out to better their lives...

After Jackson's death, spotlight remains on sudden cardiac arrest

Image via Wikipedia

The deaths of Michael Jackson and ad pitchman Billy Mays pushed heart disease to center stage these past two weeks.

Some 300,000 Americans die each year of sudden cardiac arrest, according to figures from the American Heart Association. The survival rate is low. Folks do survive, though, especially if they receive medical help within the first 10 minutes of an attack.

With that in mind, I interviewed Dr. Ajoy Kapoor is a cardiologist and sarcoidosis specialist based in New Haven, Hamden and Branford, Conn.

He explains sudden cardiac arrest; what people can do to prevent and treat it.

I want to be transparent: Dr. Kapoor was among the doctors who tested me in 2005, when I was first diagnosed with sarcoidosis. It was inactive back then, slight evidence of scarring of lung tissue. I have always been good about going to the doctor for regular check-ups, but I asked for exams checking specifically for signs of flare-ups. That may have helped me avoid the situation in which I find myself.

Here's what Dr. Kapoor had to say:

Q: What is sudden cardiac arrest?

A: Basically, it is the abrupt lose of heart function. In generic terms, in laymen’s terms, the abruptness of the loss of function is key.

Q: How is sudden cardiac arrest different from a heart attack?

A: Heart attacks are a broad category. Not all heart attacks result in sudden cardiac arrest. Not all heart attacks or myocardial infarctions cause sudden cardiac arrest.

Q: What causes sudden cardiac arrest?

A: Lose of blood flow. Blockage of an artery. An arrhythmia, an irregular heartbeat or the actual heart muscle of valve might physically be disrupted. You can disrupt it in a way to create a whole in the heart or valve. Seventy percent of cases have atherosclerosis, coronary heart disease (at its roots); another 30 percent is caused by a variety of arrhythmias (cardiomapolies; dilated heart; congenital heart abnormalities; valvular abnormalities).

Q: Who is at risk for sudden cardiac arrest?

A: If they are young, it could be due to congenital abnormalities, cardiomypothy; heart attack.

Other contributing facts are

- Smoking

- High blood pressure

- High cholesterol

- Diabetes

- Smoking

- Lack of exercise

Then there are many things we still don’t know. One can have good cholesterol, be a non-smoker and still die of sudden cardiac arrest. So, we also follow markers of inflammation. But none of these gives us a complete picture.

Q: What tests can I take to find out if I am at risk for sudden cardiac arrest?

A: Give your doctor your history physical; submit to an EKG (electrocardiogram); blood work. Then decisions can me made on that information and those results. Some people may need extra testing and some people may not need extra testing.

Q: Are there definitive treatments for sudden cardiac arrest?

I stress prevention. It is important to modify life style. Smoking cessation, exercising, lowering cholesterol, (controlling) diabetes. People need to take care of themselves. Prevention is key.

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Folks do survive sudden cardiac arrest. Their stories at the Sudden Cardiac Arrest Association Website are uplifting. Check them out and have a great, safe Independence Day weekend.