Friday, February 11, 2011

UCLA Medical Center Referral

I have struggled with Sarcoidosis for thirteen years now, and in fact moved to the desert from Chicago almost ten years ago to extend my life in the dry climate. My Disease is in my lungs, and my Chicago Pulmonoligist gave me two years to live if I stayed in the Chicago climate.
In October of 2001 I pulled out of my driveway and relocated to Las Vegas. Sarcoid causes an immune system to be overactive, turning my immune system into an organ killing machine. My immune system has been attacking my body since 1997, and prescription steroids were used to suppress my immune system an slow the progression of the disease. Now, thirteen years later, I have damage to my system from thirteen years of steroids, which have surpassed the damage from the sarcoidosis. Steroids were never designed to be taken for this long. Up to a year at most, but after thirteen years, my connective tissue and bones are soft, my muscles are susceptible to tears and injuries, and my adrenal glands have shut down. I am sentenced to a life with steroids, since my adrenals no longer produce the hormones required to keep me in balance.
Sarcoid also causes your body to produce too much calcium. My body produces four times the amount of calcium needed. So where does all that extra calcium end up? If you were thinking kidneys, you'd be only partially right. Both of my kidneys are full of stones, ranging in size from seven to nine millimeters in diameter. Think of a nine millimeter bullet, and imagine trying to pass something that size...
There's one other place the excess calcium is deposited...in my arteries! Although I have kept my cholesterol within the safe levels, the calcium has deposited in my systemic arteries, including my heart. I was recently tested to find that I am in the ninety-seventh percentile of men my age for a risk of a heart attack or stroke. That means that I have more calcium than ninety-seven percent of the other men my age. It is not a matter of IF I will have one, but when!
My doctor recently tried me on a new immunosuprescent medication, which had dangerous side effects, including cancer of the lymph nodes, confusion, severe joint pain, and irritability. I had extreme fatigue, to the point that I could not stand, and up until today, was extremely ill over it. Due to the side effects, my doctor felt that there was nothing he could do but refer me to UCLA for treatment from physicians with more experience with Sarcoidosis.
I asked if there was anybody in Las Vegas that could help...his only response was "You're looking at him." This doctor has done all within his power to fix my problems. So now I must wait for SSD medicare to search for something else to block my attempts at prolonging my life and giving me some resemblance to a family.

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