chronic illness · chronic pain · lupus

The day I would begin a fight for my life.

Twenty years ago today, at the age of 19, I was taken into the E.R. by my Mom & little sister Alejandra. I remember waking up in the middle of the night and it felt like someone was sitting on my chest.  It hurt to breath and I had a horrible cough.  A month before I had been diagnosed with bronchitis but due to the incompetence of my Primary Care Physician, she just allowed it to worsen.  First thing in the morning my Mom took me to see my P.C. Upon looking at me in the lobby she immediately said I should go strait to the E.R.  It was a Friday but Alejandra convinced my Mom to let her skip school & accompany us so she could translate for her since I was so unwell.

I sat in the crowded lobby for awhile.  Once I was seen by the triage nurse, I was immediately given a bed in the E.R. and the countless testing began. I spent over 10 hours in the E.R. having an X-ray, MRI, multiple blood tests and a very painful blood gas test, if you’ve ever had one you know just how painful they are.  (An arterial blood gas (ABG) test measures the acidity (pH) and the levels of oxygen and carbon dioxide in the blood from an artery. This test is used to check how well your lungs are able to move oxygen into the blood and remove carbon dioxide from the blood. WebMD.com

When one is very ill it is extremely difficult to understand all the verbiage doctors throw at you, especially when you’re uneducated about your illness.  At that time I had only been diagnosed three months prior, had just turned 19 & my P.C. herself was not educated on Lupus, a potentially deadly auto-immune disease, yet she never once suggested sending me to see a specialist.  Thankfully I do have an Uncle who is an ophthalmologist and he was relaying to my parents the severity of my illness as it progressed.

I was finally admitted into the hospital with Pneumonia and my kidneys were not functioning well. Or in medical terms, I had Right Lower Lobe Pneumonia and Lupus Nephritis.  Since I had Pneumonia and it is considered an infectious disease I was give a large private room that also had a sofa bed so Alejandra, then 15 was allowed to stay the weekend with me.  By the next day the medications had made me feel better.  However my blood work was showing a very different story.  Even though it was a weekend it seemed like one new doctor after another kept coming in & introducing themselves because they were being assigned to my case.  My medical team consisted of  Pulmonologist, Nephrologist, Rheumatologist, Endocrinologist, Infectious Disease, Cardiologist & unfortunately my Primary Care.  Even with all this commotion, I did not realize how sick I was because the medications they were giving me were making me feel better.  So much so that the following day we had a family Bridal Shower planned.  Before the party started my Mom brought Alejandra and I a platter filled with delicious foods that they were serving at the party.  She didn’t want me to feel bad for missing it.  Needless to say my sister & I turned that night in the hospital into our own little slumber party.  After all, one of Alejandra’s greatest qualities was her ability to make the best out of a bad situation.

Within a week I had continued to worsen.  The Lupus was causing severe inflammation causing my kidney function to worsen and my pneumonia was not improving.  So doctors decided to start me on Cytoxan, a form of Chemotherapy.  I was given my first dosage on Valentine’s Day.  That evening I was visited by my dear friend since preschool, Aurelio.  He brought me a beautiful bouquet & balloons in hopes of cheering me up.  I just remember feeling so drained and unable to concentrate.  I remember the look of sadness on his face when he couldn’t even get a smile out of me because I felt so terrible.  By the next morning all the side effects kicked in.  I was violently vomiting, had terrible chills and felt absolutely horrible.  From that day forward I felt extremely ill.  Nothing was helping. I was being constantly pocked and prodded but nothing was making me feel better. After nine days in the hospital, two days after that first dose of chemotherapy, my body began to shut down.  My pneumonia had worsened and my kidneys had failed.  On a Sunday evening I was taken down to the Critical Care Unit (CCU) and a temporary dialysis catheter was placed in my chest.  I would have my first round of dialysis the following day.  This to me was terrifying.  More so due to the fact that I could see all the blood from my body go through a machine to be cleaned. Again due to my severe illness, extreme amounts of medications and high toxicity levels in my body caused by the kidney failure, I was not able to grasp the severity of my situation.  Unfortunately reality would soon show me how physically sick I truly was.  The worst was yet to come.

Erica D.

 

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