After picking-up my wife, Wanda, from the lobby of St. Bernadine Memorial Hospital, I was literally weathering the storm as the rain poured down for a third straight day Wanda has suffered from the painful sickle cell anemia disease since she was three years old, and struggles daily to overcome the odds against her.
Most symptoms of sickle cell disease are related to either long-term (chronic) anemia or blood vessels blocked by sickle cells. As Wanda grew up and became an adult, she continued to experience terrible painful events, commonly referred to as "having a crisis," in her hands, feet, abdomen, back, and chest. During a sickle cell crisis, the pain can last from hours to days. Most people with sickle cell disease experience severe anemia and other health complications. These health complications may also result in a heart attack and early death.
Sickle cell is a disease associated with African Americans and is a "misunderstood health secret," in our culture. As I grew up, the disease of sickle cell was never discussed among my family members, friends and associates.
When I met Wanda and we fell in love, she told me that she had sickle cell, but her confession made no difference to me. We got married! A few months later, Wanda and I didn't even think about the possibility that her Social Security payments would be reduced and her Medicare coverage could be taken away. Over the last eight years, during the Bush presidency, Social Security and Medicare regulations were changed not in favor of the working poor whether single or married Americans. Countless numbers of working poor Americans get married and cannot afford any health care coverage. As I think back, if I had known the possible negative impact on my wife's benefits that marriage presented, we probably should not have got married and instead just lived together. Although my wife's financial benefits were reduced because we were married, we continued to battle administrators to maintain the health care coverage that is essential to her life survival over the sickle cell disease. The full Medicare coverage was the only hope for my wife to beat the odds of surviving the pain and health stress on her body and to live a longer life.
After more than 10 years of marriage to Wanda, I am used to getting up in the middle of the night, dialing for paramedics to rush to my home and deliver my wife to a county hospital emergency care center. Conditions at county hospital emergency care centers vary depending on the facility. Some emergency hospital centers are no more then holding cells for the homeless and area residents without health care coverage. Many patients suffer from minor to life-threatening illnesses. At some hospitals, I've waited for hours with Wanda as she suffered from the sickle cell pain in order to receive medical care, get admitted and not be left out in the hallway on the emergency ambulance bed waiting to be assigned to a room and hospital bed.
As I watch my wife suffering from the pain that moves throughout her body as she waits for emergency care, there are moments when I barely can keep the tears from pouring down my face because I feel so useless in my inability to relieve the pain and stress that my wife experiences. I constantly hope that Wanda does not have a crisis on a Friday or Saturday night, when inner-city county hospitals are full of patients who do not have healthcare coverage and whose only hope for medical care is to go to emergency centers. If Wanda has a crisis at night on a weekend, in order to avoid overcrowded emergency centers, she withstands the pain until the early morning hours.
While hospital care for sickle cell patients varies from one emergency center to another, I must say that at San Bernadine Medical Center, located in the city of San Bernardino, the patient care for sickle disease is first rate. The hospital staff makes it possible for Wanda to be admitted immediately to emergency care in order to receive the blood transfusions, oxygen, and the injections of drugs to reduce the pain to the point where she can recover from the crisis.
After Wanda was released from the hospital after our most recent trip, as I drove through the rain storm taking her back home, I was happy as I remembered the nurse's comment concerning my wife's sickle cell disease crisis recovery: "You are lucky," the nurse said to my wife. "Most sickle cell patients don't live to your age. They die young."
Wanda is 60 years old, and when she arrived home her loved ones greeted her at the door with big smiles. Wanda is the mother of a son and a daughter who do not have sickle cell. She is grandmother to five grandchildren who are healthy and do not have the disease.
Wanda accepts life a day at a time and she continues to weather the healthcare crisis as she overcomes the odds for survival.
Ronald Ellerbe is editor of Hub City News and columnist for LA Beez.
Photo for collage from Wikimedia Commons
I met my husband in 1988. We finally married in 2001. His experience has been the same as your wife. Please advise if you know of a support group to help me better handle the situation. I get frustrated when I see how he's mistreated at the hospital. Sometimes I feel helpless. He's on so much medication. I sit up at night and watch him sleep to ensure that everything is OK.
My wife is 31 and has sickle cell. We have two children ages 3/6. It is vvery difficult and last month she went to or stayed in the hosp for 20 days. She is on a lot of meds. I wanted to know if anti-depression are helped for a person in her condition. I find myself sometimes depressed when she goes through what she does. What do you do?