In 2002, I became ill and went through a series of hospitalizations for an assortment of reasons. I had symptoms ranging from stomach cramps to pneumonia. I also began to suffer from tightness in my chest, which was accompanied by severe chest pressure and shortness of breath. I lost nearly 60 pounds within a year, and I began to get dizzy as I moved about through my home and as I traveled outdoors. My doctors were unable to find a solution, even though they searched high and low.
I continued to go in and out of the hospital for several years until my doctors diagnosed me with congestive heart failure, often referred to as CHF. During this time period, my father passed away. After extensive research with my father’s physicians, we learned that my father suffered from and ultimately died of CHF, as did my fraternal grandmother and fraternal great-grandmother. As a result, I learned to follow several steps that helped me make this difficult process less traumatic, steps that might also benefit others.
As a first step, you should have a basic knowledge of your family’s medical history. This should be emphasized as we get older (after the age of 40) and more members become ill. This is especially important among African-Americans, due to the propensity for higher rates of untreated hypertension that often leads to CHF.
I was told that my blood pressure was far too high during a Red Cross blood drive while in my 30s, and although I was fully covered by medical insurance, youthful indiscretion caused me to ignore warning signs until my problems progressed.
I was forced to get a defibrillator and pacemaker on three separate occasions and am now in need of a heart transplant. I receive oxygen 24 hours a day and treatment at the Cleveland Clinic, where I was placed on the organ waiting list in October 2014.
This led me to a second step, which was to follow my doctor’s orders and ask questions when necessary. If you find visits to the doctor to be intimidating, ask a trusted family member or friend to accompany you. In my case, the lack of oxygen that travels from my brain to my heart causes me to suffer frequent memory deficits and extreme fatigue. For this reason, my wife accompanies me to most of my visits so we both have a clear understanding if my treatment will be changing or if there will be any change to my daily routine or medication regimen.
To keep myself active mentally and physically, I go to cardiac rehabilitation two to three times per week to keep my body physically prepared for the heart transplant surgery, which is quite extensive. Unfortunately, you have no idea when a matching organ will be located, so you have to wait.
The third and possibly most important step is to be patient. It’s the hardest part of the journey because of the toll it takes on your family – in my case, my wife. I’m thankful for having a spouse who works multiple jobs, handles the kids’ needs and makes sure that her husband is well-cared for. I thank God for placing her in my life.
The final step to remember as you wait for the organ and surgery is to find a way to occupy your mind. I work with Unyts.org, which helps facilitate organ, blood and tissue donations. Unyts is available for public speaking events. I also try to read and write whenever possible.