Updated October 27, 2007

Jon Talk to Jon here the great Midwest, USA age 48 married 23 years to Linda

I am a 48 year old white male, I'm American. After graduating from high school, I banged around from job to job, processing health insurance, repairing auto interiors, working at a nursing home, a saw mill, and elsewhere. I finally settled in at a lumber mill and somehow managed to meet this fabulous, intelligent, beautiful lady named Linda who is now my wife of 25 years. I settled down and attended 4 years of night school to become a journeyman cabinetmaker/millman/machine man.

My Job

I spent 2-1/2 years working at a sawmill. The work was mostly outdoors and my red-headed complexion didn't like that one bit! I switched to lumber mills, where the work was indoors. A lumber mill is where rough lumber is made into finished products (wholesale) such as smooth boards, mouldings (trim), concrete floats, and so on. For 10 years I set up and operated an Oliver Strait-O-Plane. That included sharpening the 4-sided carbide knives, doing all maintenance, and making all non-electrical repairs.
     Eventually I trained as a moulder man and knife grinder, working with hardwoods of every kind. I took samples, blueprints, drawings or sketches and turned them into the fancy wooden mouldings you see in courthouses, clubs, churches and libraries. My work also went into some yachts and mansions. The cabinetmakers in my Local hid all my mistakes when they installed the stuff. ;-)

My Family

My family - Linda must have married me for love, because she's a class act and I am the most blunt, intense, opinionated man you will ever meet. My wife is in the healthcare game. She is Director of Network Operations for SSM's Central Billing Office in our city. She keeps up the house, drives a church van, is earning her Master's degree in Business, and still finds time to bother me! When we moved, she had to give up playing the church band but still plays her grand piano every chance she gets.
     I appreciate my family because they were nearly killed in an automobile accident in 1994. My big sister Suzi Bee - five feet of pure nitroglycerine - and my 2 younger brothers Randy and Stu round out the family. Last but not least Hi Mom! I have great respect for my mom. She did the impossible - she raised me with both of us surviving the experience.

My furry friends - I no longer have any dogs - both our Rottweilers have died and we haven't yet found a new puppy. They sure kept me from getting bored! Rotties are the smartest and most entertaining dogs I know and I've had dogs all my life. Our Rotts have through the years taught themselves to open sliding doors and remove contents from the cabinets within; to turn light switches off when they want to sleep and back on when they wake up; and also to open fence gates with their noses. Rotties are by nature friendly, very people-oriented dogs.

My Lord - In 1996 Jesus switched me from the Justice line to the Mercy line in front of God. I am a true Bible-Belt Christian. Death no longer frightens me and the relief is enormous. Jesus took burdens from me; He didn't place them on me. His kingdom is based on love, not religious mumbo-jumbo. See Romans 13:8 to 10.
     After 22 years of cigarette smoking (2 to 3 packs daily), I quit smoking about 10 years ago. My thoughts on Christians and a lot more can be seen at Jon's Random Thoughts.

My Heart Failure

At age 36 - the day after surgery to remove my gallbladder - my entire lower body swelled up like a balloon about to pop. This was my introduction to edema and it was very scary. In the emergency room, I was told I had heart failure. Later, I would discover that I had idiopathic DCM, with an ejection fraction of 13%. At age 36, physically fit and muscular, this was a shock.
     A heart biopsy showed no antibodies to viruses and the cath showed no blockages at all in my arteries. The cause of it is simply unknown; no heart attack, no blocked arteries, no nothing. Just lucky, I guess.
     I got pretty depressed but a few things turned me around. The first thing was that I got a dog (Mr. Dawg). Then Jesus handed me a whole new life. He also handed me the responsibility of this web site. A second dog soon followed. Depression gone.

A big shock was that my gallbladder wasn't the problem. My heart condition should have been diagnosed much sooner from the enlarged size of my heart muscle and many other symptoms. My doctor misdiagnosed me with respiratory infections, gallstones, flu, and other wrong guesses for a year; getting it wrong over and over again. He even stood in the hospital and argued with the doctor who finally got my diagnosis right. He is no longer my doctor.
     If your doctor misdiagnosed you too - which is quite common with heart failure - I suggest getting over it as soon as possible. Why let a crummy doctor keep you angry the rest of your life? Don't give him power over your life, which is what you do if you let him make you bitter from now on. Think about it. Let life go on!

Getting Better

Some kinds of cardiomyopathy can be "cured" and some people spontaneously get better, but for most of us the illness is chronic even if we get better. I did take a Union disability pension and also went on Social Security Disability. In December of 2004, Social Security ended my SSD and in March of 2005 my union stopped their disability pension as well.
     I worked two temp light industrial jobs for a total of 8 weeks but physically gave out on both. I then got a "permanent" light industrial job but only lasted 3 days before severe lightheadedness and mental fog cost me the job. It turned out not to be my heart but something else that happens to about one in four men who have chronic heart failure - a dangerously low testosterone level. My PCP got that corrected, and I then came down with fibromyalgia. I am now unemployed and my only income is from running this web site. It doesn't pay the bills but other options no longer seem to exist (donations appreciated).
     My EF has gone up and down but eventually made it clear up to normal, where it stands now. Heart-wise, I feel much better but I still get edema, lightheadedness, fatigue and shortness of breath despite all normal tests. I get muscle stiffness and pain from fibromyalgia that require injections and morphine to control. I have been religiously lifting weights for over 3 years and this probably slowed down the diagnosis process for my last 2 conditions. I no longer am able to walk the treadmill due to bursitis in both hips but it looks like my rheumatologist may have that under control by the end of this year.
     Since I started out with an EF of 13% and a Vo2max of 13.5, I am proof that a person with heart failure can get better - my EF is now 55% and my Vo2max is 30! There are no guarantees since every person's situation is different but there is hope and I am proof of that. Follow the program laid out in The Manual and you have a much better chance of drastically improving.
     When I got better, I cut my Monopril and Coreg doses in half. However, when I started full-time work, I slipped into class 2 heart failure again so I raised the doses back and within a week was back to class one. I have since switched from Coreg to Toprol-XL.

My Meds

Other Illnesses - Yuk!

Over the past 2 years I have been diagnosed with dangerously low testosterone levels for which I use Androgel daily. I also have fibromyalgia, which causes constant pain and stiffness, along with fatigue and off-and-on fuzzy thinking, as well as depression and anxiety. I have a painful rash on my back, caused by my immune system attacking my skin, which has caused me to fire my dermatologist and find one with whom I am now content.
     My foot and lower leg pain are neuropathy for which I take successfully Lyrica. Two sleep studies showed Restless Legs Syndrome waking my up 55+ times a night but meds have failed there. I have also just been diagnosed by a board certified sleep specialist with sleep apnea - a reader donated a great CPAP machine which I now use every night.
     Now I have rheumatoid arthritis getting worse in my hands, ankles and feet. Life keeps getting tougher but God provides.

I began web authoring to help an Australian friend with his evangelical pages. Then, with a swollen ego, I decided to put an original Bible reference work on the web. God had other ideas. I then correctly started pages to help people with heart failure. I told an ornery but very engaging fellow - the late Bill Drummond - that I might start a "forum" so CHFers could talk to each other. He told me I should do it, and being too dumb to know any better, I did.
     I don't accept advertising to support the site so my views are not influenced by companies. In times of need, readers have donated whatever I needed to keep things going. They (you) are a great bunch! This poor old web site now averages over 3 million page views a year.
     My wife and I moved to St. Louis so she could increase her earnings because donations only make me 9,000 to 12,000 dollars a year after site expenses. Whether the site will keep going or not depends on donations. Read about supporting us at chfpatients.com/about.htm.

All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. No one here is a doctor. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. This web site and all its pages copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007 Jon C.