Aplastic Anemia Survivor

Key Points

Aplastic anemia is a blood disorder in which the body's bone marrow doesn't make enough new blood cells.

This can lead to many health problems, such as arrhythmias (irregular heartbeats), an enlarged heart, heart failure, infections, and bleeding. Severe aplastic anemia can even cause death.

Aplastic anemia is a type of anemia. The term "anemia" usually refers to a condition in which your blood has a lower than normal number of red blood cells. Anemia also can occur if your red blood cells don't contain enough hemoglobin, an iron-rich protein that helps carry oxygen to your body.

In people who have aplastic anemia, the body doesn't make enough red blood cells, white blood cells, and platelets. This is because the bone marrow's stem cells are damaged.

Many diseases, conditions, or factors can damage the stem cells. These conditions can be acquired or inherited. "Acquired" means you aren't born with the condition, but you develop it. "Inherited" means your parents passed the gene for the condition on to you. In many people who have aplastic anemia, the cause is unknown.

Aplastic anemia is a rare, but serious blood disorder. People of all ages can get aplastic anemia, but it's more common in adolescents, young adults, and the elderly.

Low numbers of red blood cells, white blood cells, and platelets cause most of the signs and symptoms of aplastic anemia. Signs and symptoms may include fatigue (tiredness), shortness of breath, dizziness, headache, coldness in your hands and feet, pale skin, chest pain, infections, and bleeding.

Your doctor will diagnose aplastic anemia based on your medical and family histories, a physical exam, and test results.

Treatments for aplastic anemia include blood transfusions, blood and marrow stem cell transplants, and medicines. These treatments can prevent or limit complications, relieve symptoms, and improve quality of life. Medicines that suppress the immune system don't cure aplastic anemia. However, they can relieve its symptoms and reduce its complications. These medicines often are used for people who can't have blood and marrow stem cell transplants or who are waiting for transplants.

Three medicines-often given together-can suppress the body's immune system. They are antithymocyte globulin (ATG), cyclosporine, and methylprednisolone.

It may take a few months to notice the effects of these medicines. Most often, as blood cell counts rise, symptoms lessen. Blood cell counts in people who respond well to these medicines usually don't reach normal levels. However, the blood cell counts often are high enough to allow people to do their normal activities.

People who have aplastic anemia may need long-term treatment with these medicines.

Medicines that suppress the immune system can have side effects. They also may increase the risk of developing leukemia or myelodysplasia. Leukemia is a cancer of the blood cells. MDS is a condition in which the bone marrow makes too many faulty blood cells.

Blood and marrow stem cell transplants may offer a cure for some people who have aplastic anemia. Removing a known cause of aplastic anemia, such as exposure to a toxin, also may cure the condition.

With prompt and proper care, most people who have aplastic anemia can be successfully treated. It's important to get ongoing medical care to make sure the disorder doesn't worsen and to check for possible complications.

This was copied from The National Heart, Lung and Blood Institute.

I was first diagnosed with Severe Aplastic Anemia in 1987. I was 19 years old. I married in 1986 and soon afterwards became pregnant with my first child. In the middle of my pregnancy my blood counts started to drop. I was taking iron exactly as prescribed but my counts kept falling.

Finally after my blood counts dropped dangerously low, my doctor sent me to Huntsville Hospital and from there I was sent straight to Birmingham. By this time, I was eight months pregnant and they performed a bone marrow biopsy on me right away. The news was one of three things: bone cancer, leukemia or aplastic anemia. My parent's face drained of all color and I watched them age right in front of me with complete worry and fear. After further testing it was confirmed, Aplastic Anemia, and it was severe. My family, friends and even people I didn't know donated blood for me and tried to see if they would be a match for a bone marrow transplant but there wasn't any. The search for a bone marrow donor went country wide. With still no match, I had only one shot at living and it was blood transfusions and steroids. I was told I could have them for two years but after that the body would reject the transfusions. So here I was getting transfusions week after week, taking care of my baby girl and trying to live a normal life. That is so hard when you are restricted from being around people and in public places for fear of infections. Any kind of small infection can kill a person with this disease. Also, the bumping your head caution because you can't clot and stop bleeding. So everyone was always watching out for me that I didn't trip and fall or bump my head in any way for fear of bleeding on the brain.

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After a year of getting all these transfusions and taking handfuls of steroids, I finally had great news. I was in remission. Wow, I did it!! I made it!! I beat it!! So I thought. In 1990, I relapsed and I completely felt defeated. This whole time I thought I was cured. Then bam, those words...There Is No Cure. Once you have this, you always have it. The best I could hope for was remission. I listened to all the doctors and I was sent back to Birmingham, because the doctors in my home town didn't know how to treat me because Aplastic Anemia is so rare.

In 1987, when I was first in Birmingham, I was only the second case they had ever had. So needless to say, my trips back and forth to Birmingham were very regular. All the memories of the prior treatments and hospital stays kept running through my head. Could I fight this again? Could I endure all this again? Yes, I was going to fight this again just like before. We do all we can and find strength in us that we never knew we had when we have to fight anything to stay alive. I wanted to live!!!

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The doctors called me in and wanted to talk to my husband and me about my options. Still no matches for a donor, we were left with two choices. I could do both the transfusions / steroids again every week for a year and hope for another remission or I could try an experimental drug called ATG serum (horse serum). It would be a 14 day treatment and that was all if it worked. WOW!!! 14 days and that's all? But why did the doctors looked so concerned? This was fantastic news to me. This serum was so new that they told me there could be risk. They go on to tell me all these things that could happen. What they didn't realize is all I kept thinking was 14 days. His last risk brought me back to his attention, death.

So now, I have to weigh the options...do I go through weekly blood transfusions and daily use of a handful of steroids for a year (possibly two) again or take this huge chance for the 14 days and HOPE it takes and I go into remission? The reality for me was death in two years (the prognosis) or death in a couple weeks with the serum if by some chance I was allergic or other complications came up. I was just bursting with hope and happiness and I had to go for it. I wanted the serum. Something inside me, courage, the fight in me to live, had took over. In May 1990, I began getting the serum. The nurses and doctors were so good to me and my family. Especially, a nurse named Mary, who has the same birthday as me, June 8. She was with me the first day I was admitted and took great care of me the whole month I was on her floor.

The serum had to go through a central line in my neck and after it was placed, it was really easy. No pain, no more needles and being stuck with veins blowing up. I was so tickled. The weekend before I was to go home and completed the serum, my husband came and stayed with me. The rest of the family was at home waiting on me to come back after my two week stay. That's when everything started happening. I had spots coming up all over me that looked like blood blisters. I couldn't stand up because those spots were even on the bottom of my feet and the pain was more than I can describe. It honestly hurt to touch me. I started swelling all over. The nurses and doctors were swarming around me and telling me they were taking me somewhere that can take better care of me. The unit.

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The complications I was warned about was happening. I had become septic and was going into toxic shock. Then it just kept getting worse. Fear gripped me. I couldn't breathe. Respiratory failure. All I can remember from that is the doctor looking down over my face telling me that he's going to help me breathe. Then they found a 5 1/2 inch blood clot in my neck that had to come out. In the middle of this surgery, I woke up and I couldn't move or open my eyes. I was completely horrified. I had to let them know somehow, someway that I was awake. I concentrated on moving my fingers. If I could just move them so this nurse (I knew by hearing her talk) beside me would see and know I'm awake. I felt them doing things to my neck and still unable to open my eyes, I began to cry and the tears rolled down the sides of my face. Finally I heard the nurse telling the doctor that I was awake. When he leaned over my face, I opened my eyes and he asked me if I was in any pain, I responded by blinking once for yes. He then told me that it was alright that they were going to put me right back out. Thank God. I had also suffered a stroke that hit both eyes. All of this within hours. The pain was indescribable. Was this it? How could I fight this? This pain was unreal. The doctors gave me about a 5% chance to make it through the night. God helped me. He gave me strength when I didn't want to fight anymore, when I felt I couldn't fight any longer. I even wrote down on a notebook telling my sister in law to prepare everybody that I can't do this anymore. Between the pain, which was unlike anything you can imagine, and the exhaustion I was ready to give up. Then something happened. I don't know how else to describe it except it looked like the room lit up and felt like God had put his hand on me. It covered me completely from head to toe and from my feet to my head I was being filled with strength. I knew right then without a doubt that I was going to live.

After a week, they took the respirator out and it happened again a couple hours later...failure, I had to be hooked up again. After a few more days they started to ween me off the respirator and this time, it worked. I could breathe without the machine. I couldn't walk or sit up by myself, I had lost all muscle in my body. When I could finally be taken out of the unit and put back in a room on the floor, here came my angel, Mary. She had cried and was so afraid I wouldn't make it. Then my doctor came to see me and told me words I won't ever forget, "You fought with death and won. You are a miracle". I remember smiling at him, thinking to myself, it wasn't me. That has been 21 years ago. I have remained in remission ever since.

Why am I writing this? Well, I saw in an Alabama Paper yesterday where two children has been diagnosed with Aplastic Anemia and looking for a donor match for them both. It broke my heart. I know what they are going through and the fear their parents, family and friends have. There's hope. We can survive this horrible rare disease. I am one. I pray to God that these children and everyone else that has and will be diagnosed will go into remission. That we all can be SURVIVORS together! Thank you for taking the time to read my story.

Another thing I need to add. Please donate blood and think about becoming a bone marrow donor. You may match someone and be able to give them a chance to live. People with this disease needs blood transfusions just to stay alive. Again, thank you so much.