3.7 in a 1,000,000 Rare

“Jesus, you are the Divine Physician. Let the Precious Blood that pours from your Sacred Heart seep into all our open wounds so that we may become partakers in your divine nature. As your blood mingles with ours and runs through our veins, our bodies, and our very lives, let it cleanse, restore, protect, and heal us, Lord. Please let the salve of your Precious Blood bring us to know fully of your healing and of our redemption. Amen.”

I couldn’t tell you when or where I received this prayer card, but I remembered I had it when I came home from the hospital. If you read my previous post, “The Night Our Lives Changed Forever,” you may remember me mentioning I lost my whole blood volume twice. After receiving several units of blood before and during surgery, this actually continued while I was in ICU – along with a few units of platelets as well. Little did I know when I woke up in ICU that I wasn’t fully out of the woods yet. In fact, something was seriously wrong.

I think this was the first time I was able to feed Levi. Although I had always planned to breastfeed, I was on too many medications and my body had been through too much stress for this to be possible.

A hematologist, Dr. Nguyen, came to visit me every day and more often than not had a grim look on her face. It wasn’t for a few more days and after several tests and scans that she suspected I had a rare blood disorder called Thrombotic Thrombocytopenic Purpura (TTP). TTP causes platelet clumps to form in small blood vessels and uses up your body’s ability to clot blood. But since it is a form of autoimmune disease, my body was basically attacking itself by eating its own platelets. As soon as Dr. Nguyen suspected it was TTP, she started me on treatments right away. This involved a series of five plasma exchanges, four rituximab sessions, and steroids. The plasma exchanges were done in the hospital, once a day for five days through a port that had to be placed in my neck. They remove my blood through one tube, separate all its parts, and put it back with the new, good plasma through another tube. I had my first rituximab treatment that same week in the hospital, and the other three as outpatient once a week for the next three weeks. This is done through an IV in the arm and lasts three hours each time. Rituximab suppresses your immune system so that your body will not reject the new plasma it received, causing platelets to be eaten up again. I took steroid pills in the hospital and after I got home, then slowly tapered off of them as instructed by the prescription. The treatment was successful. Dr. Nguyen is confident this is what it was after my immediate improvement. There is a test for it which she ran, but it has to be sent off to Ohio and back. There wasn’t time to wait before starting treatments. This disease has a 100% mortality rate if treatment does not commence right away.

It is estimated that there are 3.7 cases per 1,000,000 people per year. Many cases unfortunately do become fatal because this disease is so rare, that doctors are unsure what they are looking at. I firmly believe it was no coincidence that the top doctors on this blood disorder in America work at OU Medical Center. This is where research on TTP began and all information on it comes from. Dr. Nguyen had been trained by these doctors and sent one over while I was still in the hospital to answer several of our questions for going forward. Although it feels insane to have acquired a disease that is 3.7 in 1,000,000 rare, it is also crazy to think that I was in the perfect place to receive diagnosis and treatment that ended up saving my life. I mean out of all the hospitals in the US, why would one in Oklahoma City be THE place of knowledge for this condition? It’s moments like this that remind me there really is no such thing as a coincidence.

Yes, my condition is rare. It is very unfortunate that this happened. But at the same time, I keep coming back to the thought of how blessed I am that God had me in the right place at the right time in order to save me. This just couldn’t have been a coincidence. Had I been in any other part of the country or even the state, who knows what would have happened. The Lord is good and has a plan for the rest of my life, however much longer that may be. I pray I have the heart to listen to His will and the courage to joyfully pursue it.

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