Eight. Twenty-three. Two thousand twelve. What were you doing on that day? My day was planned to start back to Thursday morning Bible study that I had looked forward to all summer long after Aubri was born. Keith was taking Shelli to get some teeth extracted for her braces that she was soon to get. And for lunch we were going to celebrate Marli's twelfth birthday anywhere she wanted. Well, the morning went just as planned on into lunch. Marli chose Little Tokyo. I pushed through the meal, though, pretending with everything I had in me that I was having a good time. I tried so hard not to ruin her birthday. We finished the meal, and I barely made it to the car. Keith put his foot down and said, "That's it. I'm taking you to the emergency room."
You see, I had Aubri just eight weeks before and I thought I was just not recovering from her birth. I was more than fatigued. I had head aches, body aches and just strange things happening to me. I thought I had West Nile. Keith made arrangements for his sister, Angie, to keep the kids for the day and to make sure Shelli was going to be okay with her medicines. When we dropped them off I just stayed in the car not knowing that it was going to be the last time in over a month that I would hug them without wires hanging out of me.
Longer story made a little shorter, when we got to the emergency room and was finally seen by a doctor I was critically ill. Wait. I was dying? No, I'm supposed to have the flu or West Nile. They knew something was severely wrong but did not know what. All they knew was that I needed immediate blood transfusions or I was going to die, and that I needed to be airlifted to University Medical Center in Jackson.
I have no account of time for the next hours or days because it all runs together. I saw so many doctors, nurses, and fellows. I was poked and prodded. I think every ounce of blood that I received in the transfusion they drew right back out of me to test. I felt like ET and Elliot at the end of the movie when they were doing all that testing and nobody knew what was wrong. At first they said I had TTP, a rare blood disease, but they were not exactly sure. They had to do one certain test to determine if it was TTP or aHUS. After a while it was determined that I do in fact have aHUS, atypical hemolytic uremic syndrome. Basically, I'm allergic to my blood. Not really, but my red blood cells spontaneously burst upon being made. By body will eventually turn on itself and my organs will shut down.
My 9/11 just became 8/23. My world was crashing down around me. Was I even going to make it at this point? My mind was running everywhere just as people were in New York City that day scrambling for help. Lives changed forever. Life as they knew it would be no more. Life....as I knew it....would be no more. I did not exactly what that would be. I did not know how to plan.
For the next twenty-eight days on the 5th Floor I made my home. I took twenty-three apharesis treatments and two rounds of chemotherapy. They gave me a plethora of drugs to keep me alive and to help me combat the affects of the drugs and treatments I was receiving. I made friends with the all the staff. I began to look forward to "what the new plan of the day" was going to be since yesterday's plan didn't work on me. My daily platelet count was a highlight of the day, too! It told me how much closer I was to dying or how much closer I was to living another day.
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| Plasma Exchange - Apheresis Treatment
It separates the blood into three parts. For me, it took out my bad plasma and put in good plasma. My body was resistant. Hence, the good steroids, Benadryl, Tylenol, and chocolate milks to help with reactions. Each treatment was about two hours long depending how reaction of my body. These were exhausting and traumatizing to the body.
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Off all the things that I had imagined in my mind lying in the emergency room, this was NOT IT! I can barely understand exactly what it is that I have. How am I going to explain this to people? It is so complicated, and so rare. So rare, in fact, that in 2012, only 300 cases in the United States had been documented and 500 in Italy. Now given the population of both the US and Italy, that is 800 cases in about 375,000,000 people. That 800 is on the right side of that first comma folks. That is a tiny amount of people, and I am one of them. And to further this rarity, there is only ONE drug that keeps us 800 people alive. ONE DRUG! You take an infusion and it only lasts for fourteen days and you go get it again. Soliris is its name. You won't find it on the $4 list at Wal-Mart. The cost of this ONE drug to keep us special 800 people alive each time we go is $99,999.99! It ain't cheap. If you need to see the bill, I will be happy to show you. It's the most expensive drug on the market. And who is blessed to have this rare disease, ME! MISSY!
I want to share more this week about my time in the room and how the Bible gave me such strength it was divine intervention. I want to share about being a mother during that time. I will share my heart on control issues and small stuff. God taught me a lot in that hospital room. So stay tuned. This is installment of ___, I don't know. I'm just thankful I'm here to write out my story.
Praises Y'all!
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