Words of Wisdom and Gratitude From Mr. Jimmy W.
When Jimmy was about a year old, his parents were concerned because he bruised so easily. He would bruise from just being picked up. They brought him to a doctor, and he was diagnosed with severe hemophilia A. That was over seventy years ago. Jimmy is now retired.
Back when Jimmy was a young boy, there were no treatments for hemophilia, and he suffered many joint bleeds throughout his young life and into his adult life. That is until about 40 years ago, when he was introduced to Hemophilia of Georgia (HoG), the organization he is so grateful to and that has forever positively impacted his life. Jimmy recently shared a touching remark, “Thank you HOG. You have been a part of my adult life for the past 40 years. You have made my life (health care wise) better than I can explain in words.”
Jimmy became involved with HoG in February of 1983, after receiving a bruise on his forearm from putting together a twin bed. Over the following week, the bruise became increasingly worse and began swelling up and cutting off the blood flow to his hand. Jimmy ended up going to the doctor at the Hemophilia of Georgia Center for Bleeding Disorders at Emory University. The doctor thought he might have to amputate his arm. Jimmy ended up being admitted to the hospital for surgery.
As it turned out, they were able to save his arm, but during this time his cousin did some research and found out about HoG. Jimmy had never heard of Hemophilia of Georgia, but reached out to the organization and before he knew it, two nurses from HoG came to the hospital to visit. Jimmy did not know anything about home treatment or that prophylaxis existed. The nurses took the time to educate him about home infusion treatment, put him on a home infusion program, and trained him to perform the treatment on himself at home as needed. This forever changed his life. Being able to treat himself at home and on demand was revolutionary and helped reduce his joint bleeds. However, by this time, Jimmy’s joints were badly damaged from many years with no home treatment.
The nurses recommended he see Dr. Sid Stein, M.D., a Hematologist who worked at Hemophilia of Georgia’s Center for Bleeding Disorders at Emory University. Dr. Stein put him on prophylactic treatment. Years later, Jimmy had to have a total hip replacement from the many years of joint bleeds he suffered for most of his life. Dr. Stein worked along with his nurses to see him through that procedure and the lengthy healing process. Later, he had to have two knee replacement surgeries. As a result of his surgeries Jimmy was unable to work. He loved his job. He managed two dry cleaning stores, and he was always moving.
Jimmy stated, “I worked 12–14-hour days and I loved what I did. It kept me active which is a great thing…being active helps you stay strong. This is so important because as you get older it gets harder.” Throughout all his surgeries, Jimmy tried to maintain a positive outlook. One of the most comforting things for him throughout this process was his HoG nurses, who were instrumental in answering his questions, advocating for him, and getting him the help he needed such as treatment programs, medication, and sharing new treatment products. The nurses helped educate him and influenced him to stay healthy by making better lifestyle choices.
“Nurse Penny has been my nurse now for several years and has always been absolutely awesome! I just want to thank all the nurses and staff at Hemophilia of Georgia. What they have done for me is beyond what I can say in words. I can’t thank them enough for everything they have done to help me to live a more normal and productive life!”
When asked what advice he would give to someone young diagnosed with a bleeding disorder he shared, “The best advice I would give is to be proactive in your treatments, ask questions of your doctors and nurses, and stay as active as possible! It is so important to be active and keep your muscles strong. As I always say: Take care of you and your joints while you are young so they can take care of you when you are old.”