For almost 6 years, I worked as a retail store manager. In April of 1997, I was put on medical disability due to my declining heart condition.
My problems all started when I was an 18 year old freshman in college. One day, I started noticing that I was becoming extremely fatigued when I was walking to my classes. Also, the 3 flights of stairs to my dorm room were causing me to nearly pass out by the time that I climbed to the top. My roommate took me to the campus infirmary twice. However, because I had also developed a non-productive cough, both times I was given cough syrup and sent on my way.
After fainting in one of my classes, I was sent to my hometown for tests. However, no cause for my symptoms was found.
Finally, after once again complaining on the phone to my mother about how awful that I felt, my mother contacted my brother, David, who was also a student at the same college where I was attending. He took me to a doctor in a nearby town. That doctor performed an EKG on me. He then proceeded to tell me that I needed to be in the hospital "now". However, the doctor did not tell me the specifics of my problem. He just said that my EKG was abnormal.
My brother drove me to the hospital 4 hours away in our hometown. Immediately, doctors, nurses, and other hospital personnel were surrounding me. I found out that I was experiencing Congestive Heart Failure. If only 24 more hours had elapsed, I would have been dead. A truly sobering thought.
After losing 10 pounds of fluid overnight, from all of the Lasix, a strong diuretic, that was pumped into my body, my muscles drew up into unfathomable cramping pain. This was the result of all of the potassium that had been eliminated from my body because of the Lasix that I had been given. Eventually, 3 days had passed and I was sent home.
I was told that I would be fine. I was told that there probably would not be any permanent damage to my heart muscle.
Two years later, I experienced a very rapid heart rate called tachycardia. I was put on Lanoxin (digoxin). This drug, I was told, was to increase my heart muscle function and to keep my heart beating at a normal rate.
For the next 3 1/2 years, I lived a normal life. After 4 months of marriage to Jimmy, I found out that I was pregnant. Because I had been on Lanoxin for 3 1/2 years, my OB/GYN sent me to see a cardiologist as a precautionary measure. My cardiologist performed several tests on me. Next, he asked to speak to Jimmy and me in his office. We were truly unprepared for the news that he had to tell us. The doctor told me that if I remained pregnant, most likely I would die and my unborn baby would die. I had Cardiomyopathy, a degenerative disease of the heart muscle. Jimmy and I were completely devastated. My doctor even looked as though he were about to cry. I did not want to go on. At that moment, I just wanted to die.
I was sent to a cardiologist at UAB (University of Alabama in Birmingham) for a second opinion. Unfortunately, the second opinion confirmed the first. There was almost no chance that I or my unborn baby would survive the pregnancy. The sorrow of the decision to end my pregnancy because of my deteriorating health is inexplicable. The next few days and weeks were a living nightmare.
While I was pregnant, my ejection fraction, the force at which the heart pumps blood throughout the body, was 23%. A normal person's is typically greater than 60%.
Four months later, I wound up back in the hospital. Once again, I was suffering from congestive heart failure. Obviously, my heart was permanently damaged. After 3 days, I was sent home. Now, I was on a daily regimen of Lasix to prevent me from having fluid to continue to back up in my lungs.
For the next 5 years, I continued to work full time. My hours on the job were usually long. My job was very stressful. I made many more trips to my doctor at UAB. I underwent many more tests. I was put on several more drugs. I landed in the hospital several more times.
Finally, my heart couldn't take it anymore. I was put on medical disability from my job in April of 1997. A month later I was evaluated for a heart transplant. On one test, I did better than expected. I was not put on "the list" at that time. My life at that point was in limbo. I was happy that I wasn't going to have to consider risky surgery. However, I still felt physically lousy most of the time. Also, I was not able to work. It was a very frustrating feeling.
A few months later I was put on Coreg. This drug helped my heart rate drop from approximately 115bpm, beats per minute, to 75bpm. After I got used to it, I did feel somewhat better.
In August of 1998, I was once again evaluated for a heart transplant. After 4 days of tests, my doctor listed me for a heart transplant.
On October 30, 1998, I was called as a back-up for a heart at UAB. I was excited, nervous, and scared. Several preliminary tests were performed on me. After several hours, however, I was told that I could go home. I wasn't a match.
I won't tell you that I wasn't disappointed. I, also, won't tell you that I wasn't a little bit relieved. After all, I wouldn't be human if I didn't have some conflicting emotions.
I am writing this diary on, May 20, 1999. I don't think that I can explain to you what it's like to be me. Some days I feel OK. I look perfectly normal. However, most days I feel exhausted from the time that I wake up in the morning until the time that I go to sleep at night. Also, I have to deal with insomnia, nausea, dizziness, and other symptoms from time to time. Even, typically, "easy tasks" are difficult for me now.
Thank you to Jimmy, Mom, my family, and my friends for your much needed caring, love, and support. Thank you God for sustaining my life up until this point and for giving me hope when I feel like I just can't go on.
