Sunday, August 4, 2013

The Waiting Is The Worst Part

It took five month to get to today. That's really not that long when you think about it. It takes 18 years to get to adulthood, it took me 30 years to meet then marry my lovely wife DawnMarie, and it will take me a lifetime to understand my place in this crazy world in which we live. But lets get back to today...this is the day I found out I have a rare histiocyte disorder called Erdheim-Chester Disease (I told my friends and family on the 8/12).

The funny thing is that after waiting for five months to receive a diagnosis I am numb to it all. When I first went to the ER for pain in my back and sides I waited all night to get the results of a CT Scan which showed "anomalies" and I was incensed at the wait. Then I waited days to have someone explain those anomalies and I started to get worried. Then I waited for the results from a MRI, Endoscopic Ultrasound, Robot Assisted Surgery, Bone Density Scan, and Nuclear Medicine Bone Scan.

Every new test takes a few weeks to get scheduled and then a few more weeks to get the results of. So here I am after a series of just a few weeks repeated again and again with my rare disease diagnosis. I am upset, no one wants any disease let alone a rare one after all. However, I think all the waiting has helped me prepare for this diagnosis and lets face it I'm lucky, it takes some people years to figure out what they have wrong with them.

At least there is a plan for this illness, I am going to start taking a drug called Kineret® by daily subcutaneous injection starting tomorrow. This drug targets the over production of histiocytes in my body which are causing the ECD masses.

Moving forward I will get a PET Scan to map where the ECD has established in my body. Then we will monitor the success of the drug in destroying the ECD. Hopefully...unless something changes.

Two things I have learned so far in this journey. First, I have an amazing group of friends, coworkers, parishioners, and a incredible God. Second, life can't be planned for sometimes it just happens.

What are you waiting to hear about in your life? Tell me about it!

1 comment:

  1. So glad to hear that there is a treatment plan.Pastor, you are God's child and He is in control.Peace.

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