On December 27th, 2013, I was diagnosed with a heart disease called dilated cardiomyopathy.
There is no history of heart disease in my family. I am 51 years old. I’ve had a healthy diet for most of my life. I’ve been committed to exercise 5-6 times a week, beyond a walk, for 6 years. I exercise for 25-35 minutes early in the morning before work, and on my work break in the afternoon I go to our onsite gym for 30 minutes to use the elliptical, or I walk outside. Even after I lost 25 pounds and am at a healthy weight, I have to do it or my body does not feel good. I have never smoked. I drink infrequently.
I never imagined that I could have a heart problem. I know a healthy lifestyle does not guarantee any problems along the way, yet it was the most shocking news of my life when I was told that my heart was enlarged and weak. Several of the medical personnel referred to it as congestive heart failure. The official name is idiopathic dilated cardiomyopathy. I’ll elaborate later in this post.
The Initial Path to the Diagnosis
Christmas Day was uneventful until late evening when I experienced symptoms that sent me to the emergency room. My two boys, Alex, 25, and Ross, 28, were home for most of the day. We don’t exchange gifts. (The weighted boxing gloves and punching bag my husband had ordered for me had not yet arrived.) We enjoyed Italian beef sandwiches and various appetizer foods leftover from the night before, and we talked and watched TV. It was a nice break from work schedules.
I normally would have exercised that morning on the stationary bike and done dance or aerobics moves or strength training for an hour. This day I had decided not to exercise, though I walked with my husband, Mitch, and our dogs in the morning and evening for 20 or 30 minutes. After we returned from the evening walk in the cold weather, I was laying flat on the carpet while I talked to my parents on the phone and began moving through some floor exercises that are therapy for my right hip, which was replaced in July, and for the arthritis in my left hip and knees. Keeping all my leg muscles strong is important and the exercises have prevented me from having hip and knee pain.
I had started having a pain in my right shoulder blade and the top of my shoulder. I thought I had overworked those areas during my upper body workout the day before. I decided to take a hot bath.
At some point at the end of my bath, I felt weak and began having trouble breathing. I had been diagnosed with asthma in early September, but it was primarily controlled through a broncho-dilator and the generic form of Singulair. I thought I was having an asthma attack. Sharp pains began to affect the top of my shoulder, the shoulder blade, and now the back of my rib cage. I was afraid that I could not get myself out of the bath, but I knew my family would not hear me with the bathroom and bedroom doors both closed and the TV on. I got myself out of the bathtub, threw on a robe, and leaned against the sink while having trouble breathing and with my chest feeling some pressure.
I walked out to the living room and told my husband, Mitch, that I thought I needed to go to an emergency room. By this time it was close to 10 pm. He had to work the next day, and my son Alex was on medical leave for a sprained ankle, so Alex drove me to the hospital. (Ross was out visiting a friend.)
As I had dressed for the hospital, I was hyperventilating. The pain kept on, too, and the 25-minute drive to Alton Memorial felt like an hour. After we arrived, I was seen immediately.
A chest X-ray revealed fluid on my lungs (pleural effusion). Pneumonia. I was hooked up to various machines, including an IV for antibiotics. I was able to slow down my breathing a bit and answer some questions. I was given a breathing treatment. I had a mask over my mouth and nose, and I had to breathe through my mouth. I could not breathe correctly. The beeps and lights on the machines, and the mask, were giving me anxiety. My breathing was quick and shallow. I could not take a deep breath. After what seemed an eternity, the time was up. Another Xray or CT was taken to look for a blood clot in my lung. Fortunately, it was clear. I was given something that made breathing easier and made me sleep, blissfully.
At some point during all of that, I told Alex he could go home.
When I awoke in the ICU the next morning, Mitch was there.
Blood had been withdrawn here and there. Strep-pneumonia was in my blood. Alex was diagnosed at the doctor with bacterial pneumonia just 5 days prior, so it made sense. I probably caught it from him. Later on, I thought it was strange that it came on me so suddenly. I had not been coughing or feeling ill. I learned that the pneumonia ultimately saved my life. It was the effects of the pneumonia that brought me to the hospital and revealed an underlying, life-threatening heart condition. Thank you, Lord, for the pneumonia.
During evaluations and diagnostics, it was found that my heart is enlarged and weak. The cause was not yet known so I needed more tests. I was scheduled to have a catheterization the next day. A tube was run through my groin up into my heart to detect any blockage. There was no blockage. At the same time, they would do a transesophageal echocardiogram (TEE).
The TEE involved spraying my throat with anaesthetics, a sedative that kept me barely awake and not remembering the actual procedure, and running a tube down my throat. I remember the tube, and I hope to never do this procedure again.
The final heart diagnosis is dilated cardiomyopathy. My left ventricle has more space in the chamber than it should. The walls are stretched and thinned out. My mitral valve is allowing some blood to go back in the left atrium (regurgitation). The valve problem likely was caused by the stretching of the ventricular walls.
The cause of my condition is unknown. My blood pressure has always been good and on the low side. We don’t know when it began. Often there are no symptoms in the beginning. See my next post regarding symptoms.
Ejection fraction is a measurement of how much blood the left ventricle pumps out with each contraction. An ejection fraction (EF) of 60 percent means that 60 percent of the total amount of blood in the left ventricle is pushed out with each heartbeat. A normal range is 55-60.
A measurement under 40 may be evidence of heart failure or cardiomyopathy.
My EF was 15 percent early in the hospital stay. (I don’t know what it is as of today. I will find out on 2/14 when I have another echocardiogram. Barnes Hospital can do it without sticking a tube down my esophagus.)
Additional Procedures and a Second Hospital
The pain in my shoulder and shoulder blade made sense with the fluid in my right lung. It did not explain the pain in my rib cage that was now present in the front as well as the back. Tests revealed fluid around my liver. There was a concern about my gall bladder. A diagnostic showed that my gall bladder and liver functions were normal. The fluid was a byproduct of my weak heart.
All this time, my blood pressure has been low.
About a pint of infected fluid was removed from my right lung through a needle guided by CT scan. The fluid had formed pockets, though, and they could not remove all of it.
A drainage tube was recommended to remove the remaining fluid. Alton did not have the specialists to perform the procedure to install the tube. On New Year’s Day I was transported to Barnes-Jewish Hospital in St. Louis. After I arrived, their team did not believe a drainage tube was the next step. The pneumonia was nearly gone. The fluid was there due to my weak heart, and water pills (diuretics) would remove it. We needed to focus on how to proceed with my heart issue.
The Treatment Plan and Going Home
Both the cardiologist working with Alton and the one working with Barnes recommended medications to strengthen my heart. We will try that first for awhile and see if it works. I was on these medications while at the hospitals.
I was released on January 2, 2014, the 9th day from the first day I went to the hospital.
I was sent home with a Zoll LifeVest, a wearable defibrillator. It is slightly larger than a bra, with electrodes and sensors that connect to a defibrillator that I must carry on a strap or hook to a belt. I must wear it for 12 weeks.
I have been on medical leave from my office job and hope to return to work on March 3rd.
***In my next post, I will share symptoms of the heart problem that I experienced much earlier I (months and years ago), and how I was misdiagnosed as having asthma.