Jonny French's Fight Against Lupus!!

My name is Margie, I'm Jonathon's mom. Jonny has been recently diagnosed with Systemic Lupus Erythematosus (SLE) which is a autoimune disease affecting mulitple symptoms of the body. Right now Jonny is in kidney failure. 3 months ago, he thought he had the flu. He had body aches, fever, no energy, after mulitple trips to the ER and being shuffled around at the OU campus clinic for almost 1 month, they were suspecting a kind of autoimmune disease. Swelling began to take over his entire body including his face. June 24th, his first trip to see the rheumatologist, she stopped her exam, and said that it appeared that he was experience multiple systemic problems, and her main concern was his kidney's. She admitted him that afternoon. It was determined by the hospitalist that Jonny was in acute kidney failure and he was unsure why. Things were happening too fast the first 3 days. They were not sure what was causing Jonny's kidney's to fail. They tested him for everything, as the hours went on, it seemed like his other organs were starting to show signs of distress. His heart, his stomach and colon. They started with Leukemia testing, checking for malignancy in his colon, he did have some lymph nodes swollen, that they were not able to explain. He had x-ray's, numerous blood work performed, ultra sounds, upper GI; it seemed every orafice on Jonny's body was looked at under a microscope. Finally a kidney biopsy was done after the 5th day. And confirmed, that Jonny's kidney's were failing as a result of Lupus. It was determined after that the Lupus was attacking the lining of his heart and stomach and colon. They immediately started him on high dosage's of steroid, to treat the inflammation that was going on throughout his body and we decided to treat the out of control Lupus with a chemo drug called Cytoxin. This drug mainly targets the enzyme that causes the Lupus antibody to become overactive. One of the side effects is that it will leave him sterile. Jonny is only 22. The doctor gave us information on donating sperm and saving it for when he decided to start a family. But, given the "grave" circumstances, there was no time for that, so we preceded with the Cytoxin and it they started to infuse the next day. Jonny's kidney functions were declining, daily. His body was giving off too much potassium so he started having chest pain and heart flutters. He went through the possbily of him passing blood clotts or having pneumonia. Ascite's was building up in his abdomen daily and his blood pressure was only controllable with the help of being on 2 different blood pressure meds. The doctors wanted to try this method (Cytoxin), to see if the kidney damage could be reversed. We are still praying that this will work. 35% of Jonny's kidney's are permanently damaged, he will never have the full function of his kidney's. He is on a daily cocktail of 13 medications, from antibiotic's, iron, stomach meds, blood pressure meds and 3 different types of food binders. As well as his high dose of steroid. The steroid's cause's swelling on its own, but it is needed to control the inflammation of his organ's. Jonny remain's extremely swollen to his abdomen, arms and legs and face. With just having Lupus, the fatigue is still present and getting in and out bed or from a seated position takes every effort imaginable. He has uncomfortable symptoms from the meds, like insomnia and lack of appetite, diarrhea.
Jonny is determined to bounce back from this. With the help from me, he has organized his medications, and takes blood pressure's twice daily and takes his weight daily. They don't want him to gain no more than 5lbs on any given day. To monitor all this internally, we have to take him to get his blood drawn 2 times per week. He has become more in tune with his body, so, talking about urine output and the color of his stool is an everyday conversation. He is on a strict diet. Not only for the Lupus, but, since he has severe swelling, he is not able to have much potassium or sodium. He eats a breakfast without pork products. Is that considered a breakfast??? This has become an overnight, life changing event. And we are dealing with what Lupus throws us one day at a time. He has great family support from his younger brother and sister and me.
I was not prepared for something like this to happen. From a mother's point of view, my worst nightmare has become his reality... daily. He was otherwise a very healthy and fit man. I've been a single parent for all of my kids since they were young. And I have done the very best I can in raising them. Jonny achieved excellence in high school,he graduated with distinguished honors and has been attending Oklahoma University majoring in Biology. He just wants to go to school and graduate. And that he is determined to do. Right now, with his immune system low and other organ complications, going to school is not an option. But hopefully, that status will change, soon. We do not have prescription coverage for Jonny. We are paying for his meds out of pocket. My health insurance out of pocket is $10,000. We have applied for disability and that his pending. I'm confident that he will be accepted and he will start receiving his benefits from that in September. But meanwhile, the out of pocket expense for his medications is a burden. He takes 3 food binders, with every meal. It helps filter out the Phosphate and other proteins that his kidney's aren't able to do anymore. He has a long road of recovery ahead of him. And there is no doubt in my mind that he will beat this and be more educated about his disease and learn to cope so he can maintain a healthy and as normal as possible, lifestyle. I appreciate all the prayers and well wish's from everyone and thank you in advance for your donation. I will keep everyone updated on his progress. Have a blessed and wonderful day!!!

All funding will go towards whatever is necessary for Jonny French. Your donation can range from $1-$1,000 or whatever you are most comfortable with.


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Margie Luoma 
Oklahoma City, OK
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