Awake! 1987 22nd June p. 21-24 - My Life With Hemophilia
My Life With Hemophilia
I WAS born in St. Petersburg, Florida, in 1949. About six months later my parents became concerned after my uncle had picked me up, tossed me into the air, and caught me. To everyone’s surprise, I got little bruises along my rib cage where his fingers and hands grabbed me as I came down.
My parents took me to the doctor to find out what was wrong. Tests revealed that I had hemophilia, which is a deficiency in the blood-clotting cycle. The most severe deficiency is the one I have, the classical A-type. I lack what is called Factor 8, which is the clotting factor that binds all the other factors together to make a good strong clot. In my case, my blood makes a good clot, but it is fragile. It breaks apart easily; often the mere pressure of blood flowing through the wound destroys the clot that starts to build up. Prolonged bleeding is the result.
As a child, the simplest things would cause a bruise. Once I sat down on my alphabet blocks, and the corresponding bruise carried the letter from the block! I can remember waking up in the middle of the night with severe pains caused by bleeding in my joints or abdominal organs. Finally, at the age of six, my doctor felt that it was necessary for me to have a transfusion of whole blood to stop a bleeding incident. That was the first of over 900 transfusions I received in my life.
Most of my problems have been from internal bleeding. I really haven’t had that many external cuts that caused a problem. However, there was a crisis one day when my mother left me alone in the car for a few minutes while she stepped into a store. She had earlier purchased a package of double-edged razor blades and some groceries. Well, sitting in the car, I decided to find out why they are called double-edged. There was quite a stir when I ran into the store with both forefingers dripping blood!
My Second Home—The Hospital
For many years I spent much time in my home away from home—the hospital—receiving transfusions to stop bleeding episodes. Progress has been slow in changing this procedure. Yet, the medical community has learned to separate blood down to its different components. So now instead of whole blood, one small factor of blood may be utilized to treat hemophilia. This enables the doctors to reduce the volume of transfused material, thereby not giving the individual a lot of material that he really doesn’t need.
While in grade school, I was not allowed to participate in recess activities. Since I couldn’t play with the other kids, I often played with just the teacher. When I was in third grade, a teacher rolled a ball to me, and when I kicked it back to her, my ankle began to hemorrhage. I spent the next six weeks in a wheelchair.
On another occasion a hemorrhage in my knee put me in a wheelchair for almost three years with full hip-to-heel braces. It was a very traumatic time in my life. When I was able to walk, I had to wear full leg braces. But after a while the braces actually put more strain on my knees than when I didn’t wear them. After three years I had had enough. I took the braces off and proceeded to go without them—in typical teenage fashion!
I still continued to have hemorrhages in various joints of my body—elbows, fingers, knees, ankles, and wrists. Treatment for these problems meant going to the hospital, where I gradually got to know the entire hospital staff on a first-name basis. Most were very kind and understanding. The especially trying hours were late at night, after everyone else went to sleep and there was nothing left to watch on television. I was left alone with my pain.
College and Marriage
After high school my parents made arrangements for me to go to college, which was difficult for them because of the financial burden of caring for a hemophiliac. However, my grades were good enough for me to qualify for a few small scholarships. So off I went to the University of Miami to study marine biology. I started spending more and more time in the campus infirmary and a local Miami hospital.
The third day at college I met a girl named Leslie. I regretted having to tell her about my hemophilia, for I felt she wouldn’t be interested in me because of my problems. Obviously, I didn’t know her very well because she felt there was more to me than my problems. Leslie helped me with my studies when I missed class, and in 1968 we were married. We moved off campus, and while Leslie worked, I attended my sophomore year. But things became more and more difficult physically, until I had to drop out of school because of the pain in my knees and shoulders.
After I left school, we moved to Winter Haven, Florida, where our first child, John, was born in 1969. Shortly thereafter we returned to St. Petersburg, where our second son, Kenneth, was born in October 1977. Happily, neither of the boys could inherit hemophilia from me.
A Life-or-Death Decision
After arriving back in St. Petersburg, Leslie and I worked selling cookware. One evening, to demonstrate the cookware, I prepared a dinner for my mother’s neighbor who, unknown to me, had just been baptized as one of Jehovah’s Witnesses. All her guests for the cookware demonstration were also Witnesses. Thereafter, as I called on her guests to sell them cookware, each of them would talk to me about the Bible. As a result of these conversations, I learned that the Witnesses do not accept blood transfusions. I told them that I thought that would be a most difficult course for a hemophiliac.
About a year later a Witness couple called at our home, and I agreed to have them study the Bible with me. As I looked into the Scriptures more closely, I became convinced that I really was learning the truth. But I would have to face an important decision: what to do about the blood issue.
I was still receiving blood transfusions. But how could I possibly give them up, since they were purportedly keeping me alive? If anything happened to me, what would become of my wife and my little son, our first, who was then just one and a half years old? Where would they go? Who would take care of them? In my heart I knew the right thing to do. But all these questions perplexed me for a while.
After my Bible study one evening, I asked the Witness who conducted the study with me: "Do you realize that I will probably die if I stop receiving transfusions?"
"Yes, John, I realize that," he quietly responded.
"Will you take care of my family if I die?"
He promised that he would see to it that they were taken care of if because of keeping integrity to Jehovah on the blood issue I were to die. However, he stressed that I should know exactly what I was doing and make sure that when I made a dedication to Jehovah I meant it and would stick to it.
One night I was on my way to get a transfusion when I realized that I still had not yet proved my integrity to Jehovah. I drove back home. Thus, November 6, 1970, was the last time I accepted a transfusion, and to this date in 1987 I have gone without any transfusions! I was baptized as one of Jehovah’s Witnesses in July 1971, and my wife Leslie was baptized in March 1972.
Six Months to Live?
The original estimate was that I would only live about six months, since I would surely have a serious problem and the doctors would not be able to stop the bleeding. How happy I am that they were wrong!
Within six months of taking my stand, though, my faith was put to the test. I had a particularly painful experience with a shoulder hemorrhage. My old hospital refused to treat me unless I agreed to let them give me a transfusion if necessary. I refused. With the help of local Witnesses, I found a hospital and staff willing to respect my wishes.
When I stopped getting transfusions, my wife and I started a treatment plan of our own: elastic bandages; ice packs; immobilization; bed rest when necessary; pain medication; and when the pain was too severe to handle, temporary hospitalization. This has worked reasonably well over the years. Oh, there has been continued deterioration of the joints that are subject to frequent hemorrhages, my knees and shoulders in particular.
"Someone Up There Must Like You!"
About the middle of 1978, I had what proved to be one of the most trying experiences of my life. I developed a hemorrhage in a kidney. Of course, the older I get, the more severe these things can be and, without transfusions, even more serious. Naturally, you can’t wrap a kidney in an elastic bandage or immobilize it from performing its normal functions. The prognosis was not good.
Normal red blood cell (hemoglobin) count is between 14 and 16, and usually I am about 16. But during the next two weeks my count dropped below five! As the next few days passed, the doctors urged me to consider the possible consequences of not taking blood. If I waited too long, they were sure I would die.
For obvious reasons, I have been very close to the medical profession all my life. I have grown to appreciate that most of them are well-meaning. They don’t want to lose a life if they think they can save it. It was hard for them to understand my position on the blood issue.
While I was in the hospital, I received a letter informing me that I had been assigned my first part on the next circuit assembly of Jehovah’s Witnesses. How my spirits soared! Within 24 hours my hemoglobin count leveled off. This was the first indication that the bleeding had stopped. Then the doctor came back and told me: "In about a week or ten days, when your hemoglobin count gets up to ten, we will send you home." Well, within three or four days it was high enough for me to go home.
Over the next few weeks, on follow-up visits, the doctor mentioned that he had learned a new way to treat hemophiliacs—"to wait." He added: "Someone up there must like you!"
Since that time—except for the occasion in 1981 when I was laid up for six weeks with a hemorrhage in my right knee—my health has remained fairly constant. I do continue to have bleeding episodes that confine me to bed for several days or even weeks, but these pass, and I am able to resume most activities.
With my beloved wife and two sons, I look forward to many more years to come. But whatever happens, I feel certain that I have done what any Christian must do—obey Jehovah whether it seems to be the easy thing to do or not. Some day medical science may develop an artificial clotting factor. But my real hope is in Jehovah’s righteous new system wherein all will enjoy perfect health. (Isaiah 33:24; Revelation 21:3, 4)—As told by John A. Wortendyke.