In the list of complications I named in Section 01) Know Your Illness, I failed to address one issue that is common among Sickle Cell patients, that being, bed-wetting. The link to the website below has good information about the issue.
• Bed-wetting, Information about Bed-wetting
For a child living with this, it can be a stressful and embarrassing issue. You don’t have to have Sickle Cell Anemia or some other health issue to be a bed-wetter. I have three family members, all of whom were healthy, who wet the bed as children. I was twelve or thirteen when I stopped wetting the bed. I remember just waking up one day having not wet the bed, and I never did it again. It was an issue that resolved itself in time.
I’m the only one in the family with Sickle Cell. In spite of this, my mother knew what it was like to be a bed-wetter. She had the issue until age six and her sister had the issue until age twelve. My aunt dreaded spending the night at her grandmother’s house because her grandmother made a big issue out of it and made my aunt feel bad about being twelve years old and wetting the bed.
Because my mom had this childhood experience, she knew that wasn’t the right approach. Wetting the bed isn’t something a child can control, so putting pressure on them to stop, and making them feel bad about it, is the wrong way to handle the problem.
Growing up, I lived in a rural area, so I only had one friend whose house I spent the night at. I remember my mom talking with his mom about my problem. I also remember that I did wet the bed at his house. Jeremy was a true friend. He never gave me a hard time about it.
If I went on campouts, my dad always went with me to make sure I didn’t get too cold. I usually wet my sleeping bag, but my dad was careful to keep it from the other boys so I wouldn’t get teased.
I know some parents try to limit water intake before bedtime. With Sickle Cell children, that is an approach I wouldn’t recommend. Water and hydration are vital to our health. Training the child to get up in the middle of the night to use the restroom may be a wiser approach, though it was something my parents didn’t do with me.
My parents never put any pressure on me to stop wetting the bed or made me feel bad about doing so. They knew it was out of my control and it would resolve itself in time; which it did.
If any young person is reading this, I would say to you, “Don’t worry. One day you will wake up, be dry and never wet the bed again. You aren’t alone. Other children have this same problem. It doesn’t matter if they have Sickle Cell or if they are healthy, other children have the same problem. You WILL grow out of wetting the bed. I promise.”
Showing posts with label 01) Know Your Illness (About Sickle Cell). Show all posts
Showing posts with label 01) Know Your Illness (About Sickle Cell). Show all posts
Friday, September 13, 2013
Friday, December 7, 2012
Sickle Cell Disease Statistics
Do you feel as though you have a complete knowledge of Sickle Cell Disease? From your own personal experiences, do you believe you know all the problems Sickle Cell can cause? This is how I felt when I was a teenager. My belief was, “I live with Sickle Cell every day, why should I read about it?” When it came to certain things, I was a pretty closed minded teenager. As a result, I seldom looked for information to add upon my personal experience. I encourage you to learn from my mistake. Take the time to study and learn as much as possible about your illness.
Though as a teen I failed to expand my knowledge of Sickle Cell Disease, as an adult I’ve done a great amount of research about Sickle Cell; especially in preparing to write this book. It was exciting to learn about the progress made over the years in its treatment. I also discovered new things about my disease and found myself saying, “I wish I had known that when I was a teenager. It would have made a difference in how I felt about myself as a youth.”
As you continue to educate yourself about your illness, you may also discover something that gives you some peace of mind. Regardless if the information contained in this chapter improves your understanding of Sickle Cell Disease, it’s knowledge that can be used to educate others who are less informed.
World Wide:
➢ “Somewhere, every minute, a baby dies from Sickle Cell Disease (SCD).”
➢ Approximately 300,000 infants are born with the more severe forms of Sickle Cell each year.
➢ “In underdeveloped countries, 60-to-80 percent of babies with SCD die before two years of age.”
In the United States:
➢ An estimated 70,000-100,00 people live with this illness.
➢ An average of 1,000 children are born with SCD yearly.
➢ 500 people die from SCD each year .
The African Continent:
➢ Accounts for 70% of world’s Sickle Cell sufferers.
➢ An average of 200,000 children are born with SCD each year
In the Country of Nigeria:
➢ 100,000 infants die from SCD annually.
➢ 150,000 of Africa’s 200,000 Sickle Cell births occur in Nigeria.
When I read for the first time that an average of 100,00 infants die from Sickle Cell Disease each year in Nigeria, my heart sank. If such infant death rates existed in the United States, the public outcry would be enormous. People would demand more be done in search for a cure. Bringing awareness of Sickle Cell Disease’s impact on societies throughout the world is something I believe every nation needs to work on. Talking with others about your personal experiences with this illness helps make that happen.
Though as a teen I failed to expand my knowledge of Sickle Cell Disease, as an adult I’ve done a great amount of research about Sickle Cell; especially in preparing to write this book. It was exciting to learn about the progress made over the years in its treatment. I also discovered new things about my disease and found myself saying, “I wish I had known that when I was a teenager. It would have made a difference in how I felt about myself as a youth.”
As you continue to educate yourself about your illness, you may also discover something that gives you some peace of mind. Regardless if the information contained in this chapter improves your understanding of Sickle Cell Disease, it’s knowledge that can be used to educate others who are less informed.
World Wide:
➢ “Somewhere, every minute, a baby dies from Sickle Cell Disease (SCD).”
➢ Approximately 300,000 infants are born with the more severe forms of Sickle Cell each year.
➢ “In underdeveloped countries, 60-to-80 percent of babies with SCD die before two years of age.”
In the United States:
➢ An estimated 70,000-100,00 people live with this illness.
➢ An average of 1,000 children are born with SCD yearly.
➢ 500 people die from SCD each year .
The African Continent:
➢ Accounts for 70% of world’s Sickle Cell sufferers.
➢ An average of 200,000 children are born with SCD each year
In the Country of Nigeria:
➢ 100,000 infants die from SCD annually.
➢ 150,000 of Africa’s 200,000 Sickle Cell births occur in Nigeria.
When I read for the first time that an average of 100,00 infants die from Sickle Cell Disease each year in Nigeria, my heart sank. If such infant death rates existed in the United States, the public outcry would be enormous. People would demand more be done in search for a cure. Bringing awareness of Sickle Cell Disease’s impact on societies throughout the world is something I believe every nation needs to work on. Talking with others about your personal experiences with this illness helps make that happen.
Who Gets Sickle Cell Disease?
It doesn’t take much time on the World Wide Web to discover Sickle Cell Anemia is a worldwide problem. Many people falsely believe Sickle Cell is a disease only Black people get. Though it is predominately found in individuals of African descent, it’s not exclusive to them. Sickle Cell exists in countries, and those with ancestral heritage from: Portugal, Spain, France, Italy, Turkey, Israel, Saudi Arabia, India, the Mediterranean and of course Africa, to name only a few. Caucasians can also be born with this illness. You read that right; white people can have Sickle Cell also.
About Sickle Cell
Sickle Cell is not a contagious disease that can be “caught” by other people. A friend can no more “catch” Sickle Cell from you, than you could “catch” having blue eyes from a friend. SCD is a genetic disorder you are born with.
Ours is an illness that affects the body’s red blood cells. Normal red blood cells are round, flexible, and can easily pass through veins, arteries, and capillaries (the tiny blood vessels) in the body. Hemoglobin is the main substance inside red blood cells that allows them to carry oxygen from the lungs to the rest of the body.
When the Sickle Cell gene is present, it causes many of the patient’s red blood cells to become sticky and stiff rather than flexible, and sickle, or c-shaped, rather than round. These misshaped cells only live about sixteen days rather than the normal one hundred twenty. This constant shortage of red blood cells is the Anemia part of Sickle Cell.
Due to their shape, sickle cells cannot carry oxygen throughout the body the way healthy blood cells do. They are unable to pass through the body’s small blood vessels very easily. This in turn prevents blood and oxygen from being distributed throughout the body; causes damage to the bones and organs; causes mild to severe pain crises and a list of other complications I will soon talk about.
Ours is an illness that affects the body’s red blood cells. Normal red blood cells are round, flexible, and can easily pass through veins, arteries, and capillaries (the tiny blood vessels) in the body. Hemoglobin is the main substance inside red blood cells that allows them to carry oxygen from the lungs to the rest of the body.
When the Sickle Cell gene is present, it causes many of the patient’s red blood cells to become sticky and stiff rather than flexible, and sickle, or c-shaped, rather than round. These misshaped cells only live about sixteen days rather than the normal one hundred twenty. This constant shortage of red blood cells is the Anemia part of Sickle Cell.
Due to their shape, sickle cells cannot carry oxygen throughout the body the way healthy blood cells do. They are unable to pass through the body’s small blood vessels very easily. This in turn prevents blood and oxygen from being distributed throughout the body; causes damage to the bones and organs; causes mild to severe pain crises and a list of other complications I will soon talk about.
Sickle Cell Disease, the Trait, and How it’s Passed
An estimated two million Americans carry the Sickle Cell Trait in their genes; and I don’t mean in their blue jeans, but their one-of-a-kind designer DNA genes. For the most part, people who have the Sickle Cell gene (also called Sickle Cell Trait) live a healthy life with little or no complications. However, the more severe symptoms of Sickle Cell Disease can occur under the right, or rather, wrong conditions. Some things that can trigger Sickle Cell symptoms in people who have only the Trait are, alcohol or drug abuse, sudden or extreme elevation changes, dehydration, and prolonged strenuous physical activities. So, if you have the Trait or the Disease, I wouldn’t recommend you go skydiving over the North Pole while drunk anytime soon.
So how do children inherit Sickle Cell from their parents? If the birth mother and father both have the Trait, there’s a 25% chance, with each pregnancy, that their child will be born with the Disease. If one parent has the Disease while the other has the Trait, there’s a 50% chance, with each pregnancy, that the child will be born with Disease and a 50% chance it will be born with the Trait. If one parent has the Disease while the other parent is healthy, all of their children will inherit the Trait. Not like it’s complicated or anything..
So how do children inherit Sickle Cell from their parents? If the birth mother and father both have the Trait, there’s a 25% chance, with each pregnancy, that their child will be born with the Disease. If one parent has the Disease while the other has the Trait, there’s a 50% chance, with each pregnancy, that the child will be born with Disease and a 50% chance it will be born with the Trait. If one parent has the Disease while the other parent is healthy, all of their children will inherit the Trait. Not like it’s complicated or anything..
Various Forms of Sickle Cell
Sickle Cell Disease has many different types: Sickle Cell Anemia SS; Sickle-Hemoglobin C Disease (also known as Sickle Cell SC); Sickle Beta-Plus Thalassemia; and Sickle Beta-Zero Thalassemia are the four most common. Sickle Cell SS, the type I have, is the most severe form of Sickle Cell Disease; not that I’m bragging.
The various strains of Sickle Cell Disease often come with their own list of problems.
For example, a patient with SC is more likely to develop vision problems than a patient with SS. It’s just a matter of being informed about the type of Sickle Cell you have.
The various strains of Sickle Cell Disease often come with their own list of problems.
For example, a patient with SC is more likely to develop vision problems than a patient with SS. It’s just a matter of being informed about the type of Sickle Cell you have.
Possible Complications from Sickle Cell
Once you understand what complications you may be at risk for, you gain a degree of power and control in your life. That control may simply be the self-control needed to avoid strenuous activities that cause unnecessary damage to your body. The power you gain comes from choosing to live your life responsibly.
As you read the following pages, please keep in mind this is a list of possible complications that may occur. Sickle Cell is a disease that affects each patient differently. The chances are pretty good you and I won’t have to deal with every single one of the problems listed below. My purpose in naming all the possible difficulties is to help you gain greater awareness about the nature of Sickle Cell Disease.
As you read the following pages, please keep in mind this is a list of possible complications that may occur. Sickle Cell is a disease that affects each patient differently. The chances are pretty good you and I won’t have to deal with every single one of the problems listed below. My purpose in naming all the possible difficulties is to help you gain greater awareness about the nature of Sickle Cell Disease.
Acute Chest Syndrome & Sickle Cell
Is a condition similar to pneumonia where you experience a fever, coughing and difficulty breathing. It’s important to not put off a doctor’s visit if you experience such symptoms. An early diagnosis can prevent serious trouble later down the road.
Avascular Necrosis & Sickle Cell
There’s a medical term you can use to impress your friends with. Avascular has to do with the lack of blood flow. Necrosis means the death of bone, organ, or other tissue due to a lack of blood supply. Avascular Necrosis is a condition where a lack of blood supply causes the bone or bones in the affected area to deteriorate.
Avascular Necrosis is a condition that occurs in healthy people and Sickle Cell patients alike. With people who are healthy, it’s usually a result of some serious injury. In your case, the sickle cells prevent the blood from circulating throughout your body correctly. This can cause the bones in that blocked area to break down, flatten, or become brittle. The hips, shoulders, and vertebrae are most affected in Sickle Cell patients. For some, as they grow older and the condition becomes more severe, a hip replacement may be necessary. Many patients, like myself who have this problem, may require daily doses of pain medication to ease the discomfort.
Though I do have some deterioration in my hip joints, it currently hasn’t interfered with my life at all. My back, now that’s a different story. The flattening or “fish-boning” affect in my vertebrae is pretty severe in my back. Since my teenage years this has caused me to experience daily chronic back pain. In fact, rather than Sickle Cell pain crises, it’s my back that causes me to take heavy doses of pain medication on a daily basis.
Avascular Necrosis is a condition that occurs in healthy people and Sickle Cell patients alike. With people who are healthy, it’s usually a result of some serious injury. In your case, the sickle cells prevent the blood from circulating throughout your body correctly. This can cause the bones in that blocked area to break down, flatten, or become brittle. The hips, shoulders, and vertebrae are most affected in Sickle Cell patients. For some, as they grow older and the condition becomes more severe, a hip replacement may be necessary. Many patients, like myself who have this problem, may require daily doses of pain medication to ease the discomfort.
Though I do have some deterioration in my hip joints, it currently hasn’t interfered with my life at all. My back, now that’s a different story. The flattening or “fish-boning” affect in my vertebrae is pretty severe in my back. Since my teenage years this has caused me to experience daily chronic back pain. In fact, rather than Sickle Cell pain crises, it’s my back that causes me to take heavy doses of pain medication on a daily basis.
Chronic Lung Disease & Sickle Cell
Damage and scarring to the lungs can occur when blood flow is restricted. This condition can occur in patients while in their teenage years and may continue to be a problem throughout life. With Chronic Lung Disease, lung capacity is reduced and there is a lower tolerance for physical activities. Shortness of breath and dizziness may also occur. So if you try to blow up a hundred balloons for your girlfriend’s birthday party, don’t be surprised if you get a little dizzy!
Chronic lung disease is a condition I am well acquainted with. When last checked, my lung capacity was 50%. Any activity requiring breath control—such as whistling, swimming or singing—causes me to become light headed very quickly. My illness preventing me from singing in church is probably a blessing to those around me. I think my singing voice sounds like a live cow going through a meat grinder.
Chronic lung disease is a condition I am well acquainted with. When last checked, my lung capacity was 50%. Any activity requiring breath control—such as whistling, swimming or singing—causes me to become light headed very quickly. My illness preventing me from singing in church is probably a blessing to those around me. I think my singing voice sounds like a live cow going through a meat grinder.
Delayed Puberty & Sickle Cell
As a result of having less blood and oxygen flowing through your system, your body may mature at a slower rate. Having Sickle Cell Anemia may cause you to be of a lighter weight and smaller build than other kids your age. In addition, puberty may be delayed.
If you are a certain age and feel as though you haven’t physically matured like some of your friends, try to be patient. There’s nothing to be ashamed or embarrassed about. Everybody matures at their own rate. In time, those more adult characteristics that come with puberty will happen for you too. Sometimes hormone treatment is used when puberty is delayed longer than what’s normal even for Sickle Cell patients. Only by being open and honest with your doctor will you know what’s best for you.
I was what many call “a late bloomer.” Puberty came late for me. When I received my driver’s license at sixteen, I was 5ft 2in tall and weighed seventy-five pounds. I had to sit on two pillows to see over the steering wheel. I grew nearly six inches taller after high school and leveled out at 5ft 10in. Though I eventually put more weight on—by age thirty I weighed 130lbs—I’ve always had a thin frame.
I stated previously, when researching Sickle Cell as an adult, I found myself saying “I wish I had known that when I was a teenager.” Had I understood that my illness was the cause of my delayed growth, and that I would eventually mature like my friends, I think I would have felt better about myself while in high school. With knowledge comes understanding.
If you are a certain age and feel as though you haven’t physically matured like some of your friends, try to be patient. There’s nothing to be ashamed or embarrassed about. Everybody matures at their own rate. In time, those more adult characteristics that come with puberty will happen for you too. Sometimes hormone treatment is used when puberty is delayed longer than what’s normal even for Sickle Cell patients. Only by being open and honest with your doctor will you know what’s best for you.
I was what many call “a late bloomer.” Puberty came late for me. When I received my driver’s license at sixteen, I was 5ft 2in tall and weighed seventy-five pounds. I had to sit on two pillows to see over the steering wheel. I grew nearly six inches taller after high school and leveled out at 5ft 10in. Though I eventually put more weight on—by age thirty I weighed 130lbs—I’ve always had a thin frame.
I stated previously, when researching Sickle Cell as an adult, I found myself saying “I wish I had known that when I was a teenager.” Had I understood that my illness was the cause of my delayed growth, and that I would eventually mature like my friends, I think I would have felt better about myself while in high school. With knowledge comes understanding.
Eye Problems (Retinopathy) & Sickle Cell
The retina is the part of the eye that contains cells that gather light. Damage to the retina can occur when blood flow to the eye becomes blocked by sickle cells. This can cause vision impairment. Generally, such problems develop in adulthood and are more common with patients who have Sickle Cell SC and Thalassemia. For this reason, doctors recommend Sickle Cell patients have their eyes examined once a year by an optometrist.
Gallstones & Sickle Cell
If you remember, sickle cells have a sixteen-day life span as opposed to healthy cells one hundred twenty days. When red blood cells die their hemoglobin is released, which the body then turns into a compound called bilirubin. When there is too much bilirubin in the body, gallstones form in the gallbladder.
The gallbladder is the organ that helps the body process all the good fatty foods people love to eat. A fluid known as bile is produced in the gallbladder which the gallbladder releases in the intestines during the digestive process.
When gallstones form, they block the flow of bile from the gallbladder to the intestines. People suffering from gallstones will often feel pain in the upper right side of their stomach after eating fatty foods. Fever, yellowing of the eyes (called jaundice), chills, nausea, and vomiting are some of the symptoms that accompany gallstones.
Gallstone formation is a problem many people have in their adulthood. For those of us who have Sickle Cell, gallstones are a complication that can arise early in life and can be a recurring problem. For this reason, if and when gallstones begin to form in a Sickle Cell patient, the gallbladder is often removed.
The gallbladder is one of those organs the human body seems to be able to live without just fine. Though people who have theirs removed often have trouble eating fatty, greasy foods thereafter. So no more ordering chili cheese fries and a hot pastrami sandwich with onion rings on the side. My gallbladder was removed at age sixteen. Now my body is far less tolerant of the foods I named above that I once loved so much. Bummer for me.
The gallbladder is the organ that helps the body process all the good fatty foods people love to eat. A fluid known as bile is produced in the gallbladder which the gallbladder releases in the intestines during the digestive process.
When gallstones form, they block the flow of bile from the gallbladder to the intestines. People suffering from gallstones will often feel pain in the upper right side of their stomach after eating fatty foods. Fever, yellowing of the eyes (called jaundice), chills, nausea, and vomiting are some of the symptoms that accompany gallstones.
Gallstone formation is a problem many people have in their adulthood. For those of us who have Sickle Cell, gallstones are a complication that can arise early in life and can be a recurring problem. For this reason, if and when gallstones begin to form in a Sickle Cell patient, the gallbladder is often removed.
The gallbladder is one of those organs the human body seems to be able to live without just fine. Though people who have theirs removed often have trouble eating fatty, greasy foods thereafter. So no more ordering chili cheese fries and a hot pastrami sandwich with onion rings on the side. My gallbladder was removed at age sixteen. Now my body is far less tolerant of the foods I named above that I once loved so much. Bummer for me.
Hand-Foot Syndrome & Sickle Cell
This is where the capillaries in the hands and feet become blocked and swelling occurs on the topside of the hands and fingers and/or the feet and toes. This is a symptom that often affects infants and very young children. It can be the first indication that a child may have Sickle Cell Anemia.
Hearing Loss (Sensorineural Hearing Loss – SNHL)
As with many of the other complications listed, the lack of blood flow to the small bones in the ears can lead to hearing loss. For this reason, it’s advised you have your hearing tested on an annual basis. I’ve personally experienced some loss of hearing over the years. Which is either a reflection of me getting old or God’s payback for years of teasing my dad about his slight hearing impairment.
High Blood Pressure (Pulmonary Hypertension) & Sickle Cell
The term pulmonary is used when referring to the lungs. Hypertension means abnormally high blood pressure. So the medical term, Pulmonary Hypertension means a person has high blood pressure in the arteries that supply blood to the lungs.
Sickle cells are kind of like social cliques, they prefer to stick together. As they cling to each other, blood clots can form. Often they will stick to the walls of capillaries, veins, and arteries—not unlike wallflowers at dances. This, plague-like build up narrows these passageways and puts strain on the heart. Basically, your heart has to work harder to do less work in an effort to get blood to your lungs. Being overworked, the heart can become enlarged. So you could say, people with Sickle Cell have big hearts.
Enlargement of my heart, and a decrease of its function, is a complication I’ve dealt with since I was a teenager. Over the years I’ve had to learn how to balance the maintenance of my health with performing the physical activities I’ve enjoyed doing. In time, you will find that balance in your life too.
Sickle cells are kind of like social cliques, they prefer to stick together. As they cling to each other, blood clots can form. Often they will stick to the walls of capillaries, veins, and arteries—not unlike wallflowers at dances. This, plague-like build up narrows these passageways and puts strain on the heart. Basically, your heart has to work harder to do less work in an effort to get blood to your lungs. Being overworked, the heart can become enlarged. So you could say, people with Sickle Cell have big hearts.
Enlargement of my heart, and a decrease of its function, is a complication I’ve dealt with since I was a teenager. Over the years I’ve had to learn how to balance the maintenance of my health with performing the physical activities I’ve enjoyed doing. In time, you will find that balance in your life too.
Thursday, December 6, 2012
Splenic Sequestration & Sickle Cell
There’s another big medical term to use. The spleen is the organ that helps the body fight infections and filter out abnormal red blood cells, namely sickle cells. Pooling of blood in the spleen is known as Splenic Sequestration. When this occurs, the spleen becomes clogged with sickle cells. This restricts the flow of blood out of the spleen and prevents it from working properly. At first this may cause the spleen to become enlarged and blood transfusions may be needed to increase your red blood cell count. This condition is most common in early childhood.
In time, the spleen may begin to shrink and removal of it may be necessary. Often the spleen will shrink so much that little, if anything remains of it and the spleen is reabsorbed by the body. This is known as autosplenectomy.
I was in my childhood when my body autosplenectomized itself (I just invented that word). Whenever an abdominal ultrasound is performed on me, I always let the technician struggle in their search to find my spleen for a few minutes before I tell them I don’t one. My sense of humor is a little twisted; I admit it.
In time, the spleen may begin to shrink and removal of it may be necessary. Often the spleen will shrink so much that little, if anything remains of it and the spleen is reabsorbed by the body. This is known as autosplenectomy.
I was in my childhood when my body autosplenectomized itself (I just invented that word). Whenever an abdominal ultrasound is performed on me, I always let the technician struggle in their search to find my spleen for a few minutes before I tell them I don’t one. My sense of humor is a little twisted; I admit it.
Infections & Sickle Cell
Another function of the spleen is to help the body fight off infections. As a result of having a small spleen or no spleen at all, Sickle Cell patients often have a decreased immune system and are at risk of getting frequent infections. That’s why it’s important to stay on top of vaccinations and flu shots. Today it’s common practice by many doctors to begin infants and young children with Sickle Cell on a daily dose of penicillin.
If you’re in school or frequently interact with the public, carrying a small pocket sized container of hand sanitizer is a smart habit to have, especially during cold and flu seasons. You’ll be surprised what a big difference it can make in staying healthy. In high school, I caught every bug that came my way. As an adult, I learned the value of frequently washing my hands and keeping them sanitized. As a result, I now seldom catch a cold or flu.
If you’re in school or frequently interact with the public, carrying a small pocket sized container of hand sanitizer is a smart habit to have, especially during cold and flu seasons. You’ll be surprised what a big difference it can make in staying healthy. In high school, I caught every bug that came my way. As an adult, I learned the value of frequently washing my hands and keeping them sanitized. As a result, I now seldom catch a cold or flu.
Iron Overload (Iron Toxicity) & Sickle Cell
Routine blood transfusion therapy is, as you know, a common treatment in Sickle Cell healthcare. Though iron is important to the body’s health, having too much can be dangerous. The body can’t rid itself of excess iron very easily. After a patient has received twenty or more units of blood—generally ten or more transfusions—iron builds up in the body. Unable to shed the excess iron, the body will begin storing it around major organs such as the heart and liver. This can cause damage to those organs as well as other problems for the patient.
A nightly infusion of a drug called Deferoxamine can help the body shed excess iron. Five times a week the patience would have to endure a very unpleasant treatment. I remember far too well having to undergo this most unpleasant treatment—or torture, as I called. A small needle was inserted in my stomach just below the skin and taped down. Over a period of about six hours, a small pump—like a mini I.V. machine—slowly injected a medication into me.
The treatment took several hours, so I usually did it at night while I slept. I had a tendency to thrash around in my sleep. This would often cause the needle to loosen from the tape and move around inside me. If this happened, a painful welt would form by morning. The welts were so sensitive that the weight of a shirt caused discomfort. Other times, the welt was at the same level as the waistline of my pants. That also was most uncomfortable.
Today, many patients are able to take EXJADE, a pill form of Desferoxamine. While many patients respond well to EXJADE, others prefer, or do better with the injections.
As needful as blood transfusions are for Sickle Cell patients, it’s good to be aware of some of the risks that go along with them. If you’re receiving regular transfusions, ask your doctor about your iron levels.
A nightly infusion of a drug called Deferoxamine can help the body shed excess iron. Five times a week the patience would have to endure a very unpleasant treatment. I remember far too well having to undergo this most unpleasant treatment—or torture, as I called. A small needle was inserted in my stomach just below the skin and taped down. Over a period of about six hours, a small pump—like a mini I.V. machine—slowly injected a medication into me.
The treatment took several hours, so I usually did it at night while I slept. I had a tendency to thrash around in my sleep. This would often cause the needle to loosen from the tape and move around inside me. If this happened, a painful welt would form by morning. The welts were so sensitive that the weight of a shirt caused discomfort. Other times, the welt was at the same level as the waistline of my pants. That also was most uncomfortable.
Today, many patients are able to take EXJADE, a pill form of Desferoxamine. While many patients respond well to EXJADE, others prefer, or do better with the injections.
As needful as blood transfusions are for Sickle Cell patients, it’s good to be aware of some of the risks that go along with them. If you’re receiving regular transfusions, ask your doctor about your iron levels.
Leg Ulcers & Sickle Cell
These are sores that may develop on the lower legs, ankles or feet. Ulcers may be small or large. They may be in one spot or encircle the leg. There may be one or many. The sores can heal quickly or last for years. Medicine taken by mouth or put directly on the wound may help them heal, though blood transfusions may also be necessary. Injuries to the skin, improper blood flow, and insect bites, can all cause this often very painful affliction. So it might be wise to keep a can of bug spray handy to fight off pesky, disgusting mosquitoes.
In the summer of 2010, I suffered through this unpleasant complication for the first time. It started innocently enough from a splinter in my foot. Not healing as it should, it eventually turned into an ulcer about the size of a quarter and took three months to heal. I developed another foot ulcer one year later. I banged my foot against a chair and bruised the skin. The bruise turned into an ulcer which, again, took two to three months to heal. These two events taught me the wisdom of protecting and properly taking care of even the smallest of injuries to my feet and legs.
Ulcers were a complication that I never had to worry about until recent years. Clearly, it’s now something I have to be mindful of. If ulcers are not a problem in your life, take note that it’s something that could one day be an issue. Use wisdom and caution in the care of your legs and feet to prevent this complication in your life.
In the summer of 2010, I suffered through this unpleasant complication for the first time. It started innocently enough from a splinter in my foot. Not healing as it should, it eventually turned into an ulcer about the size of a quarter and took three months to heal. I developed another foot ulcer one year later. I banged my foot against a chair and bruised the skin. The bruise turned into an ulcer which, again, took two to three months to heal. These two events taught me the wisdom of protecting and properly taking care of even the smallest of injuries to my feet and legs.
Ulcers were a complication that I never had to worry about until recent years. Clearly, it’s now something I have to be mindful of. If ulcers are not a problem in your life, take note that it’s something that could one day be an issue. Use wisdom and caution in the care of your legs and feet to prevent this complication in your life.
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