The Search Continues: Elise’s Endless Anemia Journey

Headstrong girl seeks help with outstanding and upcoming medical bills for severe chronic condition with deadly consequences and no cause.

The Beginning

At the age of 17 I knew something wasn't right. Climbing stairs in my own home left me breathless and winded, hot showers made me lightheaded and gave me tunnel vision. Running (even jogging) was out of the question. My heart rate was astronomical and I was miserable. The whites of my eyes were more yellow than my fingernails, which broke at the slightest provocation. I knew something wasn't right. Now, I came from a family that didn't believe in doctors visits. I rarely ever stepped foot in a hospital or clinic unless it was a for a routine check up (which stopped at age 12) Despite my assertion that something wasn't right, my mother assured me that I was just "out of shape". I took her word for it and took a bike ride. On the way home my heart pulsed in my vision and the same deafening whoosh of my blood rushing took over and I blacked out. And this continued to happen. On the way home from the beach trudging through the sand, at school when called up to the board, at work outside on break at my first summer job.

Fortunately, the ambulance was called when the last event happened and I was taken to the emergency room. After quick blood tests I was immediately ordered two blood transfusions due to my shocking hemoglobin levels. For those that are unaware, a healthy hemoglobin level (oxygen in the blood) for women is a 12 and a 13 for men. I was a 3. My doctor then informed me that anything below a 4 is "not compatible with life". This line has stuck with me for years. I should have been dead. I should have died. And I could have at any moment. I was struggling and living the way I thought I was meant to.

During my stay I receive intravenous iron, B12, and blood treatments. Despite a 4 day stay in the hospital, the doctors were unable to find the cause of my low iron levels. It was suggested I take OTC pills and come back if I noticed any bleeding. At 18 I was diagnosed with Wolff-Parkinson White Syndrome (an abnormal pathway in my heart) and had corrective surgery (an ablation ) in 2013. The procedure helped with abnormal beating and rapid cycling (fast heartbeats and fluttering) that I was experiencing. .

The Middle

Fast forward 5 years, though, and I am falling again. My head hurts. I can't run. I can't breathe. My heart beats oddly. I return to the doctors and despite my regimen of iron pills, levels have plummeted again. They are baffled. I am not bleeding anywhere, I don't carry Sickle Cell. This time I am a 6. Not as bad as before, but very close to where I was. After another transfusion, I was referred to a hematologist in Eastchester, NY (45 minutes outside of where I live). Under his care, I am having 12 weekly treatments of intravenous iron to raise my levels to a healthy 12. Since I problem with absorption, this many treatments are required to monitor and ensure that I maintain the iron.

(Hopefully) The End

My hematologist, Dr. Asif, is working diligently to find the cause, but so far he has come up short (as has every specialist before him). I am eternally frustrated with this condition that continues to rear its head despite my best efforts. Even with treatment my body does not fully accept the iron and I hover around dangerous levels most of my life. Twice now I have been near death and I don't want there to be a third. Unfortunately, blood labs are expensive, as are the iron infusions and emergency transfusions. As I struggle to handle the financial burden, my mental health also takes a toll. I am battling this all on my own. I have no family to reach out to as we are all estranged from each other. My closest friends are my therapist and Mary (who does my iron infusions).

//

This is where you come in. Donations received will go towards:

• My 12 weekly iron infusions (They are roughly $600 each)
• MetroNorth and taxi travel costs to the doctor
• Groceries (I have to eat a lot of red meat and spinach)

My goal is set at $8000 which is just enough to cover all of these expenses. I aim to go to my weekly treatments as well as see any other specialists at the request of the ones I am already seeing. I have spent too long with this illness that won't go away until it kills me. Iron defiency anemia is typically benign, but it has chosen a body that cannot fight it.