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SICKLE CELL NATURAL HEALING
A Mother's Journey
By Tamika Moseley
AuthorHouseCopyright © 2013 Tamika Moseley
All rights reserved.
My Sickle Cell Experience
I was born in 1974 in Shreveport, Louisiana with the sickle cell trait. Having "the trait" means a person carries only one sickle gene and does not have the disease. Sickle cell trait will not and cannot turn into the full-blown disease, and under usual circumstances, a person with sickle cell trait won't feel sick or be in pain. However, it is very possible to experience symptoms of the disease under extreme conditions of over-exertion, physical stress or decreased oxygen levels. In some cases, people with the trait have gotten extremely sick and even died while playing sports or during pregnancy.
I found out I had the trait at 19 years old. I was in the Army Reserves and had medical issues with one of my legs. During my time on post, I saw several doctors who ran tests on me before releasing me on a medical discharge. A few months later, the Army sent me a letter informing me that I had been diagnosed with sickle cell disease, a fatal disease, and I should seek medical attention immediately.
I found a general physician in the phone book and made an appointment. At that age, I didn't realize I should have been making an appointment with a hematologist, a doctor that specializes in blood disorders and diseases of the blood. The doctor asked me if I was in pain often, and if I was sickly on a regular basis. Because I answered no to both questions, he told me not to worry—people with the trait never experience any difficulties with sickle cell disease and they live normal lives. Later in life, I found out that people with the trait can die, which shocked me.
Sickle cell disease is an inherited blood disease that causes hemoglobin cells to be defective in the red blood cells that carry oxygen to the tissues of the body. This process involves the red blood cells, hemoglobin and their ability to carry oxygen. A normal person's hemoglobin cells are smooth, flexible and round in shape so they can move through our body's blood vessels easily without any problems. Sickle cell hemoglobin cells are sticky, stiff and form a shape of a c, and when they lose oxygen, these cells tend to cluster together and cannot move easily through blood vessels. This cluster causes problems or blockage and it also stops the movement of healthy oxygen carrying blood. When this blockage occurs, this is what causes the painful episodes and other complications of sickle cell disease.
Growing up, I can remember often times having unexplained pain in my arms and legs. My parents had no idea why I was in pain and they didn't know what to do for me, so I suffered through the pain episodes and just became used to hurting. During my basic training in the military, we did physical training every single morning, which puts a lot of stress on the body. I would get exhausted quickly and I didn't understand why. Looking back on my life then, I can understand more clearly why these things were happening to me.
After I was released from the military, I didn't give my sickle cell trait another thought, especially after my Louisiana doctor told me I had nothing to worry about. Thirteen years later, I met a wonderful man, and we dated for a year during which time the subject of sickle cell trait came up. We realized together that not only did I have the trait, but he had SC disease, considered a milder form of sickle cell disease that happens when a person inherits the Hemoglobin C gene and the Hemoglobin S gene. SC disease may cause similar symptoms as SS disease, or full-blown sickle cell disease, but produces less anemia due to a higher blood count level. People with SC generally experience symptoms that are less severe than SS disease, when a child inherits the S gene from both parents. They may suffer from anemia, a condition that reduces the amount of available red blood cells and causes fatigue, or they may have normal levels of red blood cells. They may also have retinopathy, which is acute damage to the retina of the eye, and can experience necrosis of the bone, which is the death of bone tissue due to lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone until the bone eventually collapses.
I can't remember exactly where we were at that time, but I can remember how that news hit me. We were already in love, yet I considered breaking it off with him because the last thing I wanted was to bring a child into this world with a fatal blood disease. The decision I made was to stay together and let the Lord direct our steps.
At age 33, after a perfect pregnancy, I had my first child, a beautiful baby girl we named Mariah. I had no health issues whatsoever and wanted to have another child right away. The results I received back from the Health Department were that my daughter had the trait, which was a huge relief to my husband and me. We knew that meant Mariah is only a carrier of sickle cell disease and will never have the disease, so she should live a healthy and normal life. She took my A gene and took my husband's C gene, which is called Hemoglobin C trait. People with C trait have red blood cells that have normal hemoglobin A and an abnormal hemoglobin. The abnormal hemoglobin is called hemoglobin C. She has slightly more hemoglobin A than hemoglobin C. Thankfully; people with Hemoglobin C trait do not normally have any health problems related to sickle cell.
In 2007 I was pregnant with my second child and delivered him in 2008. This time the news we received was that my newborn baby had full-blown sickle cell disease, and my life was shattered. Aiden took my S gene and my husband's S gene which gave him SS disease. Two weeks after I delivered, I started having difficulties breathing, experienced shortness of breath and my chest hurt when I would lie down. I called my doctor and she told me to go to the hospital immediately to make sure I didn't have PE (pulmonary embolism), a blockage in one or more arteries caused by blood clots. At the hospital, I was told I had congestive heart failure, and I was transported to another hospital for further observation and echocardiography. The test came back normal this time, and my doctors really never could pin point my problem. Knowing all I know now, I believe these complications were due to my having the trait.
After that scare, I thought I was done having kids, but in 2010, I was pregnant again. My third child, Rodney, has SC disease, the same thing my husband has. I came home from the hospital and all was fine until the night I started having a sickle cell pain crisis in both my arms and both legs, excruciating pain like I had never experienced before in my life. We tried heating pads and hot baths, which helped, but as soon as I was out of the bath tub or off the heating pad, I was back at level 10 pain. I decided to go to the hospital that night, and the staff started giving me pain medication. By 1:00 the next afternoon, I told my nurse that I had a camera interview at my house at 4:00 pm with Discovery Studios and needed to be released. As soon as we pulled up to my house, I got out of the car and I could barely walk, with the pain the same magnitude it had been at the hospital. When the filming ended, I was driven right back to the hospital, and the next day I was in ICU. I was having a sickle cell pain crisis in both legs and arms; I also had congestive heart failure, fluid around my heart, high blood pressure, a lung infection, pneumonia, I was on oxygen because I was having a hard time breathing, and I had to have a blood transfusion because I had lost a lot of blood as this was just one or two weeks after I delivered my third child. Again, having the trait and being pregnant proved for me to be a dangerous combination. I knew in my heart the true cause of my suffering. Two weeks later, I was able to come home. Looking back at the video tapes my husband made of me while in the hospital, and just knowing all that happened to me, I realize now I was so close to death. But I also believe the Lord had a different plan for me.
In 2012, I experienced another crisis. I was working out daily and wasn't drinking enough water. My body was dehydrated, and a few days later I was in so much pain, my left arm was hurting so much, that I knew I had to go to the doctor. At the time, I thought I pulled a muscle, but later found out I was having a crisis from being dehydrated. As a child, I remember my brother and I always suffered from arm or leg pains but we just suffered through it. We never went to the doctor for it, we just cried ourselves to sleep many nights. Now I understand that we were experiencing pain crisis. When people say, "I have the trait and I never experience crisis," that may be true for some, but there has been pro athletes who has died from the trait. I have the trait and I didn't experience my first major crisis until I was 35 years old. I was near death when it happened, and then again at age 38. People with the trait must be vigilant in noticing any unexplained pains they may be experiencing. It could be sickle cell-related.
3 The Lord will sustain him on his sickbed and restore him from his bed of illness.
Aiden's Battle Begins
Starting life with my sickle cell baby was marked by so much confusion and heavy emotions. I was hurt and couldn't focus. Every time he would get a fever, I would automatically think "he is having a crisis" because fevers with SS disease can lead to a sickle cell crisis. On our first visit to the hospital, I brought a stack of papers and endless questions for the doctor. I had done so much research and I was trying to figure out how his doctors could minimize my baby's crisis without having to worry about horrible side effects. I left the hospital that day feeling more lost and discouraged than when I arrived. My baby was only three months old. His doctor told me I shouldn't see any problems the first six months of life, because he still had fetal hemoglobin, but I knew that after six months, sickle cell babies start to lose their fetal hemoglobin.
My son had his first crisis at age one. He began to have acute splenic sequestration. It was explained to me that when sickled cells block the blood vessels leading out of the spleen, blood stays in the spleen instead of flowing through it, causing the spleen to get bigger. When this happens the blood count (hemoglobin and hematocrit) falls and the spleen gets very large and easy to feel. This is called splenic sequestration crisis (or "spleen crisis") which can be painful. I was further told that after age five, my son's spleen would likely shrink up and die and he wouldn't have any more spleen crises thereafter.
This episode was the first of numerous of trips to the emergency room in 2009. Aiden was in the hospital every three months with a spleen crisis. His hospital stays would range from one to two weeks each time. He wasn't making any red blood cells and his hemoglobin was always considerably low. When the hemoglobin continues to drop this can be fatal, and so his doctor suggested a blood transfusion. This was another blow to me: my one-year-old baby needed a blood transfusion. I knew we had to do it so we did, and everything went well with it. By the end of 2009, Aiden was admitted to the hospital for the third time that year needing another blood transfusion. At this point, I turned to my husband and said, "I cannot do this anymore." I had no idea what I was going to do, but I knew I was going to do something different. I refused to let my child live his entire life in a hospital. I was determined not to let this disease stop me and my family from enjoying life. Aiden's doctors had told me about hydroxyurea and how it helps minimize sickle cell crisis by producing more red blood cells to prevent crisis from coming on. I was really desperate, so I said I would think about it, talk to my husband and do more research. I read all the positive research about it but once I started reading the side effects I quickly changed my mind. That drug was not an option for us anymore. And suddenly I knew: this was it. The medical profession could not do any more for my child; they could not do any more to help minimize these crises.
Even before Aiden was born, we saved our daughter's stem cells so that if we had a child with sickle cell disease we could do a stem cell transplant. Stem cells are the building blocks of the body, and have the ability to create our organs, blood tissue, and the immune system. Stem cells can be found in places like bone marrow and fat tissue, but the youngest, most flexible stem cells in the body come from the umbilical cord. When Mariah was born, my gynecologist, Dr. Tania White Jackson, informed us that this would be a great idea since there was a strong possibility of having a baby with sickle cell disease, so with extensive research and taking my doctor's advice, we decided to keep Mariah's stem cells. Dr. Jackson gave us literature on a company called CBR (Cord Blood Registry). Cord blood banking means collecting and storing the blood from within the umbilical cord (the part of the placenta that delivers nutrients to a fetus) after a baby is born. Cord blood contains blood-forming stem cells which are potentially useful for treating diseases that require stem cells transplants, also called bone marrow transplants, such as certain kinds of leukemia or lymphoma, severe sickle cell disease and severe combined immunodeficiency. After Mariah's delivery, Dr. Jackson arranged to collect her stem cells and sent them off to CBR. In doing so, my daughter's healthy cells, which have the trait, would be available to replace my son's. After a stem cell transplant procedure, Aiden would not have sickle cell disease anymore and would have just the trait like his sister. Because Aiden was having so many crises, one after the other, my husband and I discussed this option with my son's hematologist, who told us that our son may or may not be a match, that this procedure is long and drawn out, and that they do these procedures only on people with very severe cases of the disease. From my own research, I also knew that sometimes the procedure doesn't "take" and sometimes it is fatal. Did I want to put my son through this excruciating procedure? And what if it wasn't successful? What if it produced the very worst outcome imaginable?
Feeling completely without options, I turned to herbs. I had been studying herbs for about seven years by this time. I believed in the power of herbs ever since my mom told me that when she was a little girl growing up in the 1940s and 1950s, she never went to the hospital, and barely needed to see a doctor for anything. Her grandmother cured every sickness she had with a plant or some kind of tea. Finally, I knew what I had to do. This was my motivation to start treating my son's sickle cell disease with herbs.
What Is Sickle Cell Disease?
Sickle cell disease is a disorder that affects the red blood cells, which use a protein called hemoglobin to transport oxygen from the lungs to the rest of the body. Normally, red blood cells are round and flexible so they can travel freely through the narrow blood vessels. Sickle cells are half-moon shaped, and it's difficult for abnormally shaped cells to pass through blood vessels. Unlike normal red blood cells, which can live for 120 days, sickle-shaped cells live only ten to twenty days. People with sickle cell disease have a mutation in a gene on chromosome 11, and as a result, hemoglobin molecules don't form properly, causing red blood cells to be rigid and have an abnormal shape. These irregularly shaped cells get stuck in the blood vessels and are unable to transport oxygen effectively, causing pain and damage to the organs.
Sickle cell anemia can lead to a host of complications, including:
Stroke. A stroke can occur if sickle cells block blood flow to an area of the brain. Signs of stroke include seizures, weakness or numbness of the arms and legs, sudden speech difficulties, and loss of consciousness. If a baby or child has any of these signs and symptoms, seek medical treatment immediately. A stroke can be fatal.
Acute chest syndrome. This life-threatening complication of sickle cell anemia causes chest pain, fever and difficulty breathing. Acute chest syndrome can be caused by a lunch infection or by sickle cells blocking blood vessels in the lungs. It may require emergency medical treatment with antibiotics and other treatments.
Excerpted from SICKLE CELL NATURAL HEALING by Tamika Moseley. Copyright © 2013 Tamika Moseley. Excerpted by permission of AuthorHouse.
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