The side effects I am experiencing from my 60 MG's of Prednisone a day are becoming too much. He decided to wean me down to 50 MG's for a week and then 40 MG's thereafter. Might I just say, I absolutely hate Prednisone. If you know nothing of this medicine, I will write a blog just for you so that you can see just how awful the side effects truly are. For now, he is just continuing my steroid therapy until after I have my open lung biopsy. My immune system is already really weakened from the steroid and I now have an upper respiratory infection. He placed me on Antibiotics for two weeks because I have a very high chance of catching Pneumonia. I was running a 101 temperature which concerned him. My pulse was high at 108, so he is going to be referring me to a Cardiologist. He is afraid that the Vasculitis has spread to my gastrointestinal organs and so I am also going to be having a colonoscopy (yea! more fun!).
After I see my Cardio-Thoracic Surgeon on the 18th, my open lung biopsy will be scheduled soon after (like within that week). I will be in ICU for 3 days after my biopsy and in the hospital for no less than two weeks to recover. Once I am released from the hospital for my biopsy, all of my doctors are in agreement that I am going to be placed in Parkland or Medical City in Dallas so that they can get my Vasculitis under a little more control- mainly so I can have somewhat a better quality of life. I will be in the hospital for no less than a month. I digress....because right now, I am at home with my babies writing this blog for all of you.
What is Vasculitis? What is it doing to my body? Let me break this down for you in terms humans actually can understand (doctor's talk to me in all this medical jargon and half the time, I really don't understand what it is they are telling me). The Wegener's Granulomatosis is affecting all of the small blood vessels in my body. My healthy cells are at war with my unhealthy cells (basically, my body is attacking itself). We have millions of small blood vessels running through our body....and these small blood vessels are attached to some very important organs. In essence, while I am in a flare (which I have been since March 2014), my organs are fighting to stay alive. The Wegener's is attacking my lungs, sinuses, stomach, brain, and my kidneys. Right now, my kidneys are responding very well to the steroid treatment and are actually functioning at 74% which is way better than what they were functioning at a month ago (32%). The biggest organ that is being affected is my lungs. Here's where my 2nd form of Vasculitis (Goodpasture Syndrome) and my Wegener's are really attacking my body.
Goodpasture Syndrome develops a protein called collagen in the tiny air sacs in the lungs and the filtering units (glomeruli) in the kidneys. My immune's system faulty response is causing bleeding in the air sacs of my lungs which is the Goodpasture Syndrome...and the Wegener's is causing multiple nodules in my lungs which also causes bleeding, coughing, and trouble breathing. Basically, Wegener's is causing inflammation of my blood vessels restricting blood flow to my organs. I am in a constant battle with my body and it takes every single ounce of my energy to just get out of the bed every single day. There is no cure for my autoimmune disorders...and the only way to treat them is by chemotherapy, plasma exchange, dialysis, and high dosed steroids. I will always be fighting for my life. This is my daily routine...and has become something I have had to come to terms with.
Finding out I could die while my children are still young was devastating. I'd never felt so hopeless and out of control. The reason I am dealing with this so well now; God gives me comfort through His word. I am nothing without Him. When I am weak, He carries me. We can't curl up and wait for death to take us. We must be courageous. I thank God that He gives me courage. We must fight. I thank God that He gives me strength. I can't imagine my children growing up without their mother. I have to be here for them! I have to be there for the scraped knees and broken hearts. I have to be there when they go to prom, graduate, go to college, get married, and have children of their own. I have to know my grandchildren. We are tested through fire. With faith, God will bring us through it!
Daniel 3:24-27
Then King Nebuchadnezzar leaped to his feet in amazement and asked his advisers, “Weren’t there three men that we tied up and threw into the fire?”They replied, “Certainly, Your Majesty.” He said, “Look! I see four men walking around in the fire, unbound and unharmed, and the fourth looks like a son of the gods.” Nebuchadnezzar then approached the opening of the blazing furnace and shouted, “Shadrach, Meshach and Abednego, servants of the Most High God,come out! Come here!” So Shadrach, Meshach and Abednego came out of the fire, and the satraps, prefects, governors and royal advisers crowded around them. They saw that the fire had not harmed their bodies, nor was a hair of their heads singed; their robes were not scorched, and there was no smell of fire on them.
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