I retired on 30 September 1998 from a job where I had worked for 18 years, after that time I babysat my two grandchildren for two years while their mother worked. I sometimes babysat the children three or four times a week. Recently, they went on vacation and I now have lots of time on my hands. So I decided that I would get as much information as I possibly can about sickle cell disease, which I have suffered from all of my life, I will be 69 years old on 26 July 2000. I have had severe complications from this disease, lung infarcts, jaundice, atrophy of my spleen, two hip replacements, severe pain crises, frequent hospitalizations, transfusions. I found a doctor who would come to my home in the middle of the night to give me Demerol for the pain. After moving far from my home to be with my husband who was in the military, at first I had many problems with doctors and hospital personnel who would scoff at my pain at 2:00 a.m. in the morning, but after several meetings with my husband who talked to the hospital administrator about the treatment by ER personnel, my problems decreased. Also, I began working at the hospital as the supervisor of inpatient records, and I never had any problems with ER personnel after that time.
I was so fortunate to have some of the best care possible and finally, I found out how to head off a crisis. I could feel the pain which began in my chest and back, and as the pain subsided in those areas, the pain would travel into my arms, hips or legs or all over my body. About three years ago, I had become so anemic that I had to be transfused about every two months. Usually, I was only hospitalized overnight. Then, I had a transfusion on 31 December 1999, and instead of my Red Blood Cell count going down it went up, from 8.3, to 8.5 and then 9.1.
I now control my pain with oral Demerol tablets and oxygen, and lots and lots of fluids. Usually, I don’t have to go to the ER for IV narcotics. Doctors are amazed by my longevity. I started going into the computer and going into the Sickle Cell Forum for Adults. I realize now that there are people out there suffering unbearable pain on a daily basis, and some of them have to endure insults by ER personnel.
I worked from until 1998 when I retired at the age of 67. I worked each time at a healthcare facility and although I was hospitalized on numerous occasions, I always had a job to return to. Most of the people who e-mail the Forum are not able to work, in fact they are in pain almost daily, is this the way people with sickle cell disease have to cope. I was fortunate that my husband was in the military and we had good healthcare coverage. I remember as a child I would cry day and night because of the severe pain because the doctors would only give me Elixir of Phenobarbital which did absolutely nothing for my pain.
I really feel so sorry for the people who e-mail the Forum because so many of them don’t have the good medical care that they need. In this day and age everyone should be entitled to good medical care. Also, some of them are having trouble getting SSI and Medicaid. I just feel so blessed, and if I can do anything to help these people, I will.
Fortunately, of my two sisters, I am the only one with SSD. I wonder if all of the people with SSD are being told to force fluids by drinking at least two quarts each day, also, do they know that home oxygen will help. Tell them to pace themselves during their work day, and if at all possible, have their doctors give them something for pain that is strong enough to relieve the pain whenever they feel a crisis coming on.
Yes you may post my story so that other sickle cell patients may read it, that is why I wrote it to try to let other people with sickle cell know, don’t ever give up, keep on fighting. My Mom was told that I would not live to the age of 10, I was so sick, then they extended it to 20, etc. One doctor told me that I should never have children because I would not live long enough to raise them, and if I did live, I would be a vegetable. I have a son who is 31, and a daughter who is 27, also, I have two beautiful, healthy grandchildren and another grandchild on the way.
Inez C. Hardin