But let's go back to how I got here. Around Thanksgiving 2016 I started feeling ill, I started getting swollen. Turns out I was in the middle of a severe lupus flare(the worst one I had ever had according to my labs). Boom! Like that I was put in the hospital and pumped with some very dangerous and complicated drugs to combat the flare. The doctors gave me high doses of steroids and immune suppressant medication . It got so bad that they wanted me to start chemotherapy. Three months of this intense regiment of drugs and my lupus flare had not gone away. The adverse side effects of the heavy medicine were beginning to take their tole on my body. Being immune compromised and on high doses of steroids ( not the body builder steroids) left me vulnerable to infection.
It started with a a dry cough and low grade fever, then a pain in back. I couldn't sleep laying on my right side because the pain was so intense. The fevers got worse, my swelling got worse and i was beginning to see that everyone around me was worried. They pain eventually got so bad, that I went to the ER. After some chest x-rays, two broncoscopies (this is were they suck out mucus from your lungs, its very painful) I was told I had a phenothorax (fancy word for collapsed lung) and a very rare very aggressive Nocardia fungal infection. It had completelt taken over one of my lungs and had i gone another few days it woukd have spread to my brain and killed me slowly and painfully. This was a side effect of those medications to combat the lupus. I was in the hospital several weeks fighting for my life ( Nocardia has an 85% mortality rate in patients like me). I prayed every day, I prayed every moment I felt scared, my family prayed and the power of prayer is great because I was wheeled out of that hospital . It took months and lots of physical therapy to walk on my own, to climb a single flight of stairs. Just when I thought I had hit rock bottom my body decided that shingles would be something else to throw in the mix.
I was newly diagnosed with the worst case of shingles the Kadlec hospital team had ever seen. The shingles were imensly painful and no amount of pain mediation helped. It felt like I was being burned alive. I endured it all at the cost of my kidneys.
Lupus has broken my body but not spirit. In October of this year my kidney function decreased enough that I was labeled End Stage Renal Failure and placed on dyalisis to survive. With out dyalisis I will die. To me dyalisis is painful and must be done daily. It limits my daily life and hard to travel because of the equipment and supplies.
I want to live a normal life, travel, go swimming and for that I need a new kidney. Everyone is born with two, I only need one to be free of dyalisis. I was referred to a transplant team hours away from my home. My first appointment is 2 days long and a couple weeks away. If the appointment goes well I will be placed on the kidn ey transplant list. This will come with great costs, my insurance will only cover the surgery not the expenses accroud in the journey. I will need to stay one month post op away from my home with in minutes reach of the hospital . Any financial help I receive here will help cover the costs of lodging , transportation and food for my self and my care partne r. Thank you for taking time to read my story.
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