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Old Tue Jul 15, 2014, 10:09 PM
KristinR KristinR is offline
Join Date: Jul 2014
Location: New York
Posts: 7
I am NOT aplastic anemia (new member)

During the Memorial Day weekend, I was diagnosed with Aplastic Anemia. There were some funny symptoms I was experiencing. Random bruising on my body I couldn't explain, petechia (small red dots on the skin), occasional bleeding from my nose and gums, and finally fatigue, shortness of breath with heart palpitations. Yes all symptoms were out of the ordinary, but nothing seemed too alarming to run to an emergency room.

I made an appointment and went for a routine physical and figured I'd get to the bottom of it then. The following night, I got a phone call from a nurse telling me that my red and white blood cells, as well as my platelets were all dangerously low and I needed to go the emergency room now. I had always been predominately a healthy person, so It was the scariest phone call of my life.

I was immediately hospitalized and given blood transfusions. Apparently my levels were so low, doctors and nurses were stunned that I was leading normal life as a working mom. They told me it was a miracle I hadn't fainted or worse off been dead. I was given a bone marrow biopsy ( the bone marrow is where blood cells are reproduced and a biopsy is to take a sample to be studied in a lab).

I was first told by one doctor ( before receiving the confirmation of the biopsy results) who was absolutely tactless that I had leukemia. That I would undergo chemotherapy, the next year of my life would be a living hell, I was at risk of early menopause, that I would need to get a port in my chest to help with blood drawings but not to worry because I could always tattoo over it. And also to invest in a wig and many hats. I felt as though someone ripped my heart out of my chest.

I met with my hematologist oncologist ( doctor that studies blood disorders and cancers) and she confirmed that what I had was not leukemia, but a disease even more rare. Aplastic Anemia, a disease that affects 3-5 out a million Americans a year. I heard the word anemia and felt immediate relief. Because cancer is worse than anemia right?

Aplastic Anemia is an autoimmune disease. It actually is more related to leukemia then to anemia. Your bone marrow simply shuts down. You are no longer producing red blood cells that provide oxygen, white blood cells that protect you from disease and infection and platelets that allow for your blood to be dense and clot. And if you are producing, it is very slowly. Your body is attacking your bone marrow and preventing further production.

There are treatments that may put the disease into remission, but it isn't guaranteed. The only cure is to receive a bone marrow transplant, from most likely a full sibling who has the best chance of being a match. Bone marrow transplants require chemotherapy to wipe out your entire system to prep the body for a new bone marrow.

I now get blood work done twice a week to make sure my levels are stable. If they aren't, I have to go for a blood transfusion. I have days where I feel great, and days where I am exhausted and small errands over exert me. Days where I can go out, and other days where I am in reverse quarantine because my immune system is so low, I am susceptible to any airbourne infections. My blood has lost the ability to clot, so I have to be extremely careful not to cut myself cooking, shaving, etc..

I am usually a private person, but I found this to be therapeutic. I felt that I needed to do this to rid myself of the shame of being sick and feeling inadequate. Also to spread awareness. I never know what aplastic anemia was until I was diagnosed. The symptoms were silent, and had I not gone for that physical appointment, I could've been dead by now. I have days where I wake up super positive and determined, and also dark days that seem to swallow me whole.

From this day forward, I will not allow my disease to define me. I will beat this. I am so much more. I am a mother, a soon to be wife, a daughter, a sister, a cousin and a friend to many who need me and love me. And that puts the fire in my soul to push forward and do what it takes to LIVE. I struggle with aplastic anemia for now, but I am NOT aplastic anemia!
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Old Wed Jul 16, 2014, 09:59 AM
bailie bailie is offline
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Welcome to the forum. Unfortunately, many of us are already where you didn't want to be. I will be having my stem cell transplant on August 14th.

Good luck with your battle, I wish you the best.
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Wed Jul 16, 2014, 10:55 AM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,520

Your story is positive, negative, new, and familiar, all at the same time.

Positive because you have survived what is perhaps the worst moments of this disease: finding out how sick you are, and because you have found the determination to beat AA. Negative because of the detour your life has taken, what you're already missing when your body doesn't have the strength it's supposed to, and the risks you face.

New because every patient's experience is different and the way AA affects each of us is very personal. Familiar because so many stories here have the same chapters: mixed symptoms that don't seem urgent, a routine physical, a scary phone call, emergency treatment and transfusions, bone marrow biopsies, multiple doctor evaluations, tough treatment discussions, and the realization that you need to educate yourself, learn how to work within the medical system, and fight back against the disease.

Please keep us informed and we'll join you on this journey.
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Old Wed Jul 16, 2014, 11:51 AM
KristinR KristinR is offline
Join Date: Jul 2014
Location: New York
Posts: 7
Red face

Thank you to you both. I'm just glad I found a place where I can relate to people going similar struggles who I can vent to. It's very comforting for me. Ballie, best of luck with your transplant

Last edited by KristinR : Wed Jul 16, 2014 at 07:41 PM.
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