Sarah’s Bone Marrow Disease

My name is Chelsea and I am going to give you a quick overview and diagnosis details of what has been going on in the past few weeks. My twin sis Sarah had major headaches for around a month, bruises all over her body, she felt extremely weak and was very pale and yellow. She set up a doctor’s appointment for herself on Monday, on Tuesday we get a call at 9:00am from the doc. telling her to go straight to Utah Valley hospital in Provo. He said that he had a room already set up for her and a team of doctors. This was very scary! We get to the hospital... they tell us that her body is not producing red blood cells, white blood cell(that fight off infection), or platelets(that clot blood)! They didn't know why so they started a blood transfusion, because her body didn't have nearly enough blood to stay alive. The nurses kept saying "I can't believe your still alive" she was most likely going to die if she did not get the blood transfusion. In the mean time they proceeded to run all of these tests, including a brain scan, chest x ray, heart x ray, spleen ultrasound, tons and tons of blood tests (her arms and hands look like blue and purple mountains) no one could come in to the room without a mask on and they restricted visitors because if she were to get even a common cold it would be deadly. Finally they did a bone marrow test where they had to dig in to her bone through her hip with this tool that moved her whole body back and forth as the doctor twisted this tool into her bone to get a sample. They did not knock her out, they just shot her up with morphine and numbed it... it was the most cringing horrible thing I have ever seen in my life! We were all crying and praying to god that they would get a sample already! They usually have to do it once but with Sarah they couldn't get through her bone so they had to go in 2 times on her left hip and 3 on her right. The doc. said she had the strongest bones he has ever seen ha ha ha. They got those tests back and after 2 days of this, they finally found out what it was... "Very Severe Aplastic Anemia" and me being her twin sis, I get to be the donor!!! woot woot I get to save my sis, this is a very rare disease. It is even more rare that it is a twin scenario. Most people who have aplastic anemia have to go through chemo but since we are twins there is less of a chance for her body to reject my bone marrow. So she just has to take some medication that will kill her immune system and bone marrow completely, and then they will transplant my bone marrow into her;) They have to give me some medication to build more bone marrow in my system so that it will spill out into my blood stream. My bones will ache from producing so much bone marrow. After that they will put an I.V. in both of my arms, one sucking out my blood and filtering the bone marrow out and then pumping the blood back into my system through the other arm. Awesome hu!!! I am the happiest person alive right now!!! I thought I was going to loose her… my best friend, my other half, and complete heart!!! I couldn’t describe the horrible feelings this experience has brought, but it has been an eye opening experience and I am grateful for everything I have!!! Sarah will probably be going through procedures, healing, and building her immune system for the next 6-12 months. It will take 10 days to two weeks to prepare her body and do the necessary things for the procedure. They also know that she needs that time to spend with family and friends before she has to stay in the hospital for 6-7 weeks. For the procedure we are going to the Salt Lake LDS hospital where they specialize in bone marrow transplants. For the 2 weeks before the procedure, she will be staying home where we will have to disinfect the whole house, and make sure that anyone who comes over is healthy and disinfects their hands because she still does not have an immune system and will get deathly ill from any germs. She is still very weak and has to stay in bed every day,(she try's to get up and wonder around once in a while ha ha) When ever we go to the hospital she has to use a wheelchair and wear a mask. We are going to the American fork hospital every day because they are closer, where they will check stats and do transfusions if needed. They are wonderful at the LDS salt lake hospital, I wish we were closer. Other than that I don’t really know what is going to happen from here but I will keep you all posted;) keep Sarah in your prayers, and thanks to all my friends and family that have been helping us through this experience. It really has meant a lot to us and we appreciate it more than you know;) The whole family would love to hear from you so feel free to leave a comment on this page:) ((to leave a comment just go to the bottom of the page and click on the comment link to the left of the picture of the little pencil.)) You can also post any questions as well. Bellow are some details of what Aplastic Anemia is. The fallowing information might be a little different for twins, if you would like to know more about aplastic anemia twin cases just go to Google and type in twin aplastic anemia.....


marrow.org provided the fallowing info, here is the direct link: www. marrow. org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/Aplastic_Anemia/index. html



Aplastic Anemia (Severe)
Aplastic anemia is a disease of the bone marrow. The bone marrow stops making enough red blood cells, white blood cells and platelets for the body. Any blood cells the marrow does make are normal, but there are not enough of them. Aplastic anemia can be moderate, severe or very severe. People with severe or very severe aplastic anemia are at risk for life-threatening infections or bleeding.




Aplastic anemia is a rare disease. About 3 out of every 1 million people in the United States get aplastic anemia each year. The disease appears more often in eastern Asian countries, where it affects about 15 out of every 1 million people. It can affect people of any age.


Causes:
The bone marrow produces all of the blood cells for the body:
Red blood cells carry oxygen to all parts of your body.
White blood cells help the body fight infection.
Platelets help control bleeding.

Each blood cell lives only a certain number of days, so the body needs a steady supply. Healthy bone marrow is always making new blood cells. However, in aplastic anemia, the marrow makes a much smaller number than normal of all three types of blood cells. In very severe cases, the marrow can stop making any blood cells at all.

In most cases, doctors do not know the cause of aplastic anemia. In about 20% of patients, the disease develops from an inherited disorder, such as Fanconi anemia. Aplastic anemia may also be caused by high doses of radiation or certain chemicals or viruses. There is evidence that in many people aplastic anemia is an autoimmune disease. This means that the body's immune system is reacting against itself. The immune system attacks the bone marrow and stops it from making enough blood cells.