As I checked into Pomerado Hospital on June 28, 2014 I had no idea what I was in for (and neither did my family for that matter). I checked into the Emergency Room after an entire day of running to the bathroom. I believe when I checked in I had gone to the bathroom approximately 12-15 times that day…and by that time all that was coming out was blood with immense pain. After the normal ER questions, blood pressure and blood draw I was admitted into the Hospital. Admittedly, I can’t recall every detail of my nearly two month Hospital stay-but I can recall most of it in bits and pieces.
After I was admitted we tried every drug possible (and by we I mean my GI doctor-Dr. Lee and I). One of the last drugs I tried was called 6-MP or Mercaptopurine which is used to treat leukemia and is known as a chemo pill. Ingesting this drug scared me more than anything, little did I know that taking Remicade would be what almost killed me.
I had my first Remicade infusion on July 7th and with little to no relief, my doctor assured me that after the second Remicade infusion is when most people start to feel better. So, slightly earlier than two weeks from the first Remicade infusion, on July 18th, I had my second Remicade Infusion. It was at this point that I think I started to blank out quite a bit. I do know that my Doctor’s colleague came in for morning rounds, as Dr. Lee was on Vacation that week, and when he yelled into the bathroom all I spoke was jiberish. He then looked at my husband and said, “What did she say…” and my husband responded with “I have no idea.” I have no recollection of this…but it was then that my husband knew something was wrong. At first, my husband was suspicious of a drug overdose…as I wasn’t making any sense and speaking in what he would refer to as “chipmunk” talk. I was speaking fast but making no sense. I would know where I was born, but not my birthdate. It was as if my mind was battling for reality. I remember my friend Kelsey visiting me, but only later on when I was conscious and talking would I ask my family, “Did she dye her hair blonde?” Everyone was impressed that even in my state of anaphylactic shock I could recall such events. I also recalled things that were untrue…I could have sworn I had something taken from me and put on a plane. Later I would realize that my peace of mind about the future was what would be taken.
I was diagnosed with TTP (Thrombotic Thrombocytopenic Purpura) by a kidney specialist approximately four days into the darkest time in my life-up to this point. For those of you who have no idea what TTP is-it’s an extremely rare blood disorder where the platelets form like spider webs and when red blood cells pass through it cuts them in half which caused small blood clots all throughout my body. As a result it looked as if I was having mini strokes (or so my mother would tell me later on). It took my bone marrow being affected, my liver and kidneys almost shutting down for someone to figure what was wrong. I almost died because TTP was not a listed side effect of the drug remicade.
It took a pic line in my neck and ten plateletpheresis treatments where everyday for three hours through the pic line all the blood was drained from my body spun in a machine to take out all the bad platelets and replaced with donor platelets. So the next time you donate blood, plasma, or platelets think of me-it takes a lot of people to help one person. And if you’ve ever donated…maybe you saved my life!